Family Caregivers Unite!
Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. Family Caregivers Unite! empowers family caregivers by engaging them with each other, by sharing with them other family caregivers’ inspiring experiences, exciting ideas, and world-leading innovations in business and activism. Family Caregivers Unite! connects them with sources of trustworthy, understandable and useful information. Family caregivers united, empowered and informed get listened to!
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Support for Grieving Children, Teens and their Families
Britta Martini-Miles is Executive Director of the <a href="http://www.grievingchildrenlighthouse.org/">Lighthouse Program for Grieving Children</a>. Candace Ray is Program Director at Lighthouse. They share their personal stories. They describe Lighthouse and its work. They discuss grieving in children, teens and their families, the various circumstances of the deaths that hinder grieving, and the effects. They explain the support that Lighthouse provides for grieving in the various circumstances. They discuss financial aspects of care provided by Lighthouse, especially when the death of a loved one brings financial challenges for the family. They explain how the death of a loved one is a time of crisis which, if handled with caring and support, can become a process of growth. They say what they intend to do and would like to see done by others to expand the support needed by grieving children, teens and their families. They share the messages for family caregivers and their family members.
Multiple Sclerosis, Family Conversations about Care
Ann Stewart is chapter manager of the <a href="http://mssociety.ca/en/">Multiple Sclerosis Society of Canada</a> , Lethbridge & District Chapter. Norine Thomason has been caregiver to her husband Bill since he was diagnosed in 1969 with multiple sclerosis. They share their personal stories and explain the work of the MS Society. They highlight the most challenging of the challenges to quality of life for people living with MS, their family caregivers, and their families. They discuss the support most needed by people living with MS and their family caregivers to help them overcome the challenges to their quality of life. They share their advice about family conversations for people living with MS and their family caregivers. They say what they intend to do and would like to see done by others to so people living with MS and their family caregivers get the help they most need in overcoming the challenges created by MS. They share their messages for family caregivers and their family members.
Physicians, Humane Caring, and Family Caregivers
Dr. Brian Hodges, a psychiatrist, is Professor in the Faculty of Medicine and the Faculty of Education at the University of Toronto and Vice President Education at the University Health Network, among other appointments. He leads the <a href="http://www.theamsphoenix.ca/">The AMS Phoenix Project: A Call to Caring</a>. He shares his personal story and explains the Phoenix Project. He discusses the medical profession’s view of caring and how this could be changed by proposals from the Phoenix Project. He describes the role of family caregivers in the new world of caring as envisioned by the Phoenix Project. He discusses the role of family caregivers caring for family members with serious mental illnesses, and the obstacles he foresees to their being admitted to the circle of care, from which they are now often excluded. He identifies the things that he wants to do and see done to help family caregivers care for their family members with serious illnesses, and shares his message for family caregivers.
The Role of the Roman Catholic Faith in Family Caregiving
Angelo Minardi is a full-time Chaplain at All Saints Catholic Secondary School. He describes his personal story, his work as school Chaplain, and his experience of family caregiving. He discusses the ways in which the Roman Catholic faith supports family caregivers, including young people who have the role of family caregiver, who are members of a congregation of a Roman Catholic Church, who are members of its local community or, through an Archdiocese, who live in a major city. He explains how the Roman Catholic faith views parents’ responsibilities to their children and children’s responsibilities to their parents. He gives examples of care supported by the Roman Catholic faith, and says whether pressures on healthcare systems are increasing the need for faith-based care facilities. He says what more he wants to do and see done to increase help for all family caregivers in their caring and in taking care of themselves. He shares his message to families and family caregivers.
Soul Stories for Creating a New Perspective for Family Caregivers
Alicia Howes, <a href="http://www.yoursoulstory.com">Your Soul Story</a>, has explored thousands of Soul Stories. She shares her own story, says why she founded the business, and explains its work. She describes soul stories and explains how these help tell the person’s future and past. She discusses hurdles to happiness and describes the tools she’s developed to overcome these. She explains hurdles to happiness for family caregivers caring for family members with serious health challenges, and how soul stories and the tools can help them overcome their hurdles. She says how family caregivers can know how much happiness they deserve, and how soul stories and the tools can help them achieve their happiness. She explains how soul stories and the tools can help family caregivers achieve harmony in their relationships with family members they’re caring for. She says what more things she wants to do with soul stories and tools to help family caregivers, and shares her message for family caregivers.
Family Caregiving and Cystic Fibrosis
Leona Pinsky trained and worked as a lawyer. She and her husband of 25 years have four children the youngest of whom has cystic fibrosis. She’s a passionate supporter of <a href"http://www.cysticfibrosis.ca">Cystic Fibrosis Canada</a>, for which John Bennett is the Newfoundland & Labrador Regional Director and Provincial Advocate. He’s been a tireless volunteer since his son John was diagnosed with cystic fibrosis in July 2010 at just 2 ½ months old. They describe their lives as parents of children with cystic fibrosis. They explain Cystic Fibrosis Canada’s support for family caregivers and its work generally. They discuss the role of family caregivers with family members living with cystic fibrosis, identify the challenges they face, and the support they need. They say what they intend to do and would like to see done to help family caregivers receive the help they most need in overcoming the challenges created by cystic fibrosis, and share their messages for family caregivers and their family members.
Artists Unite to Triumph over Health Adversity
Christine Bayer, a watercolour, mixed media and acrylic artist, <a href="http://www.christinebayer.com/">Christine Bayer</a>, was diagnosed with multiple sclerosis in 2001. Jerry Ford, at age 28, had his life severely affected by the onset of multiple sclerosis. With Jerry, her husband, Christine founded <a href="http://www.artdetriomphe.org">Art de Triomphe</a> They explain its work, the various creative arts that it supports and how it supports these. They discuss the ways in which it celebrates triumph over adversity and helps people recognize and understand their innate abilities and make the fullest use of them. They talk about the future of Art de Triomphe, and the challenges that have to be overcome in building interest in its programs and services widely across the geographic communities. They say what they intend to do and would like to see done by others to help people triumph over their adversities, and they share their messages for family caregivers and their family members about triumphing over adversities.
Personal Injury Law, Paraplegia and Quadriplegia, and Family Caregivers
Matthew J. Padberg, is a principal and partner in <a href="http://www.padbergcorrigan.com">The Padberg & Corrigan Law Firm</a>, which focuses on civil litigation, medical malpractice, aviation law, workers’ compensation, general personal injury law, and wrongful death. Dan Thompson, living with quadriplegia from a car accident, owns <a href="http://www.deegeerehab.com">DeeGee Rehabilitation Technologies Ltd</a>, operating across North America, which develops Life Care Plans among other services. They highlight their work related to paraplegia and quadriplegia. They explain claims, compensation, and the ways in which these pertain to the effects of paraplegia and quadriplegia. They explain lawsuits, how the challenges created by paraplegia or quadriplegia are assessed, and how compensation helps persons living with the challenges. They discuss ways in which persons and their family caregivers can be helped to get the support they need in caring for paraplegia and quadriplegia, and share their messages for family caregivers.
Family Caregivers and Adverse Events in Home Care
Dr. Nancy Sears is a registered nurse in Ontario. Her research examines patient safety in home care across Canada. Kathy Walker has a Master’s degree Social Work and is a registered social worker, with 15 years of experience. She’s family caregiver for a son with a serious mental illness. Nancy describes her research. Kathy explains her work as a family caregiver. They discuss adverse events and serious mental illnesses. Nancy summarizes the findings of her research into adverse events in home care, and its implications for family caregivers. Kathy explains how the adverse events occur in home care for family members with serious mental illnesses, and describe experiences of family caregivers. They discuss future research into adverse events in home care including those associated with serious mental and physical conditions. They highlight the ways in which family caregivers can be helped in preventing adverse events in home care, and share their messages for family caregivers.
Family Caregivers, Help Us Defeat Depression
Dave Gallson is the Associate National Executive Director of the <a href="http://www.mooddisorderscanada.ca">Mood Disorders Society of Canada</a>. He shares his personal story, describes the Society, and explains the <a href="http://www.defeatdepression.ca">Defeat Depression Campaign</a>. He talks about depression, its severity as an illness, who it affects, and how it affects them. He describes the care needed for persons it affects. He discusses the role of family caregivers in caring for young, adult and elderly family members who are affected by it. He says what more he wants to do and to see done to improve help for family caregivers with family members with depression. He describes what more he wants the healthcare and social services systems generally to do to improve help for family caregivers with family members with depression. He shares his message to families and family caregivers with family members with depression.
Family Caregivers and Safe Driving for Seniors
<a href="http://www.drmichaelgordon.com/">Dr. Michael Gordon</a>, is a medical professor, ethicist and one of Canada’s best known geriatricians. Susan Eng is Vice President for Advocacy at CARP, Canada’s national, non-partisan, non-profit organization, <a href="http://www.carp.ca/">CARP</a>, focused on a new vision for aging. They describe their work and say what they see as the most difficult challenges created by driving in an aging population. They discuss the most important things, including warning signals, which family caregivers should know about. They explain important things that family caregivers should think about, such as driver testing for seniors, remedial driver training, and seemingly mild memory problems in elderly family members. They describe what they see as a fair and reasonable basis for seniors to be assessed from the perspectives of having to give up driving, of human rights and of insurance premiums. They share their messages for family caregivers with elderly relatives who are driving.
Family Caregivers Helping Family Members Overcome Alcoholism
Michael Bryant is a Harvard-educated lawyer, former Ontario cabinet minister and university lecturer. He describes his personal story, the role of alcohol in his life, and his book, ‘28 Seconds, A True Story of Addiction, Tragedy, and Hope’, <a href="http://www.ow.ly/jT7Bx">‘28 Seconds</a>. Based on his own experience, he describes alcoholism when it’s fully developed, and its stages of development. He identifies warning signals that family caregivers should understand. He explains what they can do in response to the warning signals and the challenges created for family caregivers by alcoholism in a family member. He shares his cautions. He says what more he wants to do to improve help for family caregivers with family members with alcoholism. He describes what more he wants the healthcare and social services systems generally to do to improve help for family caregivers with family members with alcoholism. He shares his message to families and family caregivers with family members with drinking problems.
Mental Healthcare in Private Residence Organizations
Diane Marshall, Executive Director of the Residences of 1425 Bayview,<a href="http://www.residencesofbayview.com/">Residences of 1425 Bayview</a>, shares her story, describes her work, and explains the Residences’ work. She discusses the mental illnesses cared for by the Residences. She explains the Residences’ purposes and how these meet community needs. She discusses the Residences’ principles and how these meet residents’ needs. She describes the Residences’ methods that are most important for the residents’ mental, emotional and physical wellbeing. She explains the residents’ special needs, how individual residents’ special needs are assessed, and how the Residences meets them. She talks about family caregivers’ needs, how these are assessed, and how the Residences supports individual family caregivers. She says what more she would like to do and see done to further develop mental healthcare in private residence organizations, and shares her message for family caregivers caring for family members with mental illnesses.
High-Risk Responses to High-Risk Behaviors in Mental Illness
Dr. Chris Summerville, CEO,<a href="http://www.schizophrenia.ca">Schizophrenia Society of Canada</a>, shares his personal story and describes his work. He explains high-risk behaviors in schizophrenia and mental illnesses generally, and high-risk responses to high-risk behaviors associated with mental illnesses. He discusses the challenges that high-risk responses create for people with mental illnesses who become involved with law enforcement and healthcare systems, and for their family caregivers. He discusses overcoming the challenges created by high-risk responses for people with mental illnesses who become involved with law enforcement and healthcare systems, and for their family caregivers. He explains the Circle of Care, and the ways in which family caregivers caring for family members with mental illnesses may be excluded, says what protections would be needed if family caregivers were to be included, and considers what type of organization would be needed to include family caregivers.
Veterans Memories Caring for Veterans
Dr. Tiffany Chow is Senior Clinician-Scientist at Baycrest’s Rotman Research Institute. Jill Paterson is a Project Manager for the Historica-Dominion Institute. They explain their work with, respectively, The Memory Clinic, <a href="http://www.ow.ly/jsE2y">The Memory Clinic</a>, and The Memory Project, <a href="http://www.ow.ly/jsE7i">The Memory Project</a> Dr. Chow explains what’s known about the ways elderly persons with Alzheimer’s disease respond to reminders of important memories and how the Memory Clinic works with them. Jill Paterson explains how memories of veterans are carefully preserved in The Memory Project. Dr. Chow says where her research is leading for care for Alzheimer’s disease. Jill Paterson identifies research questions regarding help for veterans’ family caregivers. They say what they intend to do and what more they would like to see done to enable family caregivers to help their elderly family members manage their memories in a positive way. They share their messages for family caregivers with family members who are elderly veterans.
Empowering Family Caregivers with Voice and Visibility
Donna Messer is the “Queen of Networking”,<a href="http://ow.ly/jppRm">http://ow.ly/jppRm</a>. She discusses her personal story and her experience with family caregiving. She describes her work and projects she’s done that helped empower groups with voice and visibility. She discusses the challenges for any group that needs voice and visibility because it hasn’t got enough of an audience and needs more visibility in places where decisions are made or where they face opposition. She describes the help they need, and explains why particular types of help are so important. She explains the services she advocates and provides, and gives an example of a group that succeeded in getting its needs heard and understood. She says what more she wants to do and see done generally to help family caregivers caring for caring for family members with serious, incurable physical and mental illnesses, including those who are at the end of life. She shares her message for groups of family caregivers seeking voice and visibility.
Marriage with Quadriplegia
JR Harding and Erika Richards-Harding were married on August 12, 2006. JR,<a href="http://www.jrharding.com/">www.jrharding.com</a> is two-time survivor of spinal cord injury, 1983 and 1998. He is quadriplegic, twice over. He completed his doctorate from Florida State University in Higher Education and Public Policy. She has a journalism and dance degree, and now teaches tennis. They talk about their personal stories, lives and successes. They each say what their marriage means to them. They speak about the greatest challenges that quadriplegia created for their marriage and for each of them. They explain the ways in which they together overcame the challenges that the quadriplegia created for their strength as a family, for their intimacy, and for their future as a family. They say what they intend to do and what they want to see done to provide more help for couples who live with the challenges created by quadriplegia. They share their messages for couples who live with the challenges created by quadriplegia.
I am only a Mom Caring for Autism
Barbara Lebo, MBA, BComm, CAAP, NIB, is CEO of Lebo Media Services, which she has owned and operated for 25 years. Married for 24 years, at age 52, she has a daughter of 13, a son of12, and a son of 7, Braeden, who lives with autism. She shares her personal story and explains the meaning the Episodes’ title, ‘I am only a Mom Caring for Autism’. She describes her role as Mom caring for Braeden. She discusses the challenges that he and she experience and explains the ways in which she responds to the challenges they both face. She discusses the most important types of help she needs, why the particular types of help so important, her experience in getting it, and the reasons that she sees for her experience. She says what more she wants to do and wants to see done generally and by the medical profession to help family caregivers caring for children living with autism, and to help their children. She shares her message to family-caregiver Moms caring for children living with autism.
Legacies and Family Caregiving
Judith Snow, MA, has been labeled disabled. She’s Founding Director of Laser Eagles Art Guild,<a href="http://www.lasereagles.com">www.lasereagles.com</a>, which makes creative activity available to artists with diverse ability. She describes her own story, her career, the successes she’s achieved, and her role as family caregiver. She explains legacies, at what stages of life are they relevant, and how are they affected by expectations. She describes her father’s legacy and how he worked to achieve it. She discusses expectations when people go into long-term care or decide to live out their lives at home. She explains how legacies can be passed on in ways that create positive expectations. She says what she means by “What you believe is what you get”. She says what more she wants to do and see done to help persons and their family caregivers create legacies when they are confronted by challenges created by disabilities, and she shares her message to families and family caregivers about legacies and expectations.
Wills, Powers of Attorney, and Family Caregivers
Barry Fish,<a href="http://www.familyfight.com/">www.familyfight.com</a>, senior partner in his law firm, Fish & Associates Professional Corporation, describes his legal practice, his experience with family caregiving, and his book, ‘The Family War, Winning the Inheritance Battle’. He explains inheritance battle and the ways he advocates for winning it. He gives examples of problems that families, family caregivers and family members encounter in matters of inheritance. He explains Power of Attorney and what families, family caregivers and family members should know about it for wills and inheritance. He discusses Power of Attorney when an aging family member is affected by dementia, such as Alzheimer’s disease. He identifies things that he believes are needed to help families manage inheritance fairly and effectively when age-related health problems affect their loved ones. He says what more he’d like to see done by the medical profession to help family caregivers. He shares his message to family caregivers.
Mild Cognitive Impairment, Truly a Family Affair
Dr. Nicole Anderson, <a href="http://research.baycrest.org/nanderson">http://research.baycrest.org/nanderson</a> is a Senior Scientist at the Rotman Research Institute at Baycrest Health Sciences, and an Associate Professor of Psychology and Psychiatry at the University of Toronto. She explains mild cognitive impairment and how it relates to dementia and Alzheimer’s disease. She talks about the book she co-authored, ‘Living with Mild Cognitive Impairment’, <a href="http://www.baycrest.org/livingwithmci">www.baycrest.org/livingwithmci</a> She discusses the challenges that mild cognitive impairment creates for diagnosis and treatment, for the persons who experience it, and for families and family caregivers. She explains how its challenges are most successfully confronted so it can be lived with. She says what more she wants to do and see done to help confront the challenges of mild cognitive impairment. She shares her message for persons confronting the challenges of mild cognitive impairment and for family caregivers concerned about a family member with mild cognitive impairment.
The Political Party for People with Special Needs
Danish Ahmed,<a href="http://www.ordinarywords.com">www.ordinarywords.com</a> born a blind Pakistani albino to immigrant parents on welfare, has beaten all the odds. Judith Snow, MA, who has a background of being labeled disabled, is Founding Director of Laser Eagles Art Guild, an organization making creative activity available through personal assistance to artists with diverse ability, <a href="http://www.lasereagles.com">www.lasereagles.com</a> They share their personal stories, and highlight their career successes. They explain the Political Party for People with Special Needs, <a href="http://www.ppsn.on.ca">www.ppsn.on.ca</a> their work with it, its political objectives, and the political advances it’s seeking. They describe the Party’s methods, messages and resources, its plans for the next election, its methods for getting publicity, and the particular population of voters it’s targeting. They explain the benefits to all of society of the advances the Party is seeking to achieve, and share their messages for the community of persons with special needs.
Partnership in Family Caregiving for Stroke
Jordan Bruce,<a href="http://www.ow.ly/i2dpx">www.ow.ly/i2dpx</a> survived three heart attacks, a small stroke, and a massive stroke that paralyzed his left side and caused epilepsy. He’s back at work. Marie Cortes, his fiancée, has been by his side throughout. They talk about their lives before the attacks and strokes. They describe the first moments of the first event. They explain how their lives evolved afterwards and the challenges that followed for each of them. They discuss the ways in which they both confronted the challenges. They look back over their lives together and explain how the ways in which they both confronted the challenges contributed to healing. They reveal the stage their partnership has reached and how confronting the challenges helped them reach it. They say what more needs to be done to help partnerships confronted by serious, life-threatening events, such as strokes. They share their messages to family-caregiver partnerships confronted by serious, life-threatening events.
How We Set Up Our Internet Charity for Family Caregivers
Mary Bart is founder and Chair of an Internet-based registered Canadian charity operating as “Caregiving Matters”,<a href="http://www.caregivingmatters.ca">www.caregivingmatters.ca</a> Chris Kata is Director, Caregiving Matters, to which he brings his internet marketing expertise. They both describe their experiences of family caregiving. Mary says why Caregiving Matters was created. Chris says why he became involved. Mary talks about the steps in creating it. They explain why they established it as a registered internet charity. They discuss its work and the roles and importance of volunteers. Chris explains how the internet is used as a way of honoring a loved one named by a grieving family in a donation to a charity. They discuss the challenges in setting up a charity. They share their advice for others wanting to do something similar. They both say what they want to do and to see done to promote charitable activities among family caregivers. They share their messages to family caregivers interested in charitable work.
Crowdfunding for Family Caregiver Entrepreneurs
Craig Asano is the Founder and Executive Director of the National Crowdfunding Association of Canada,<a href="http://www.ncfacanada.org/">www.ncfacanada.org/</a>. Amy MacFarlane is Founder and CEO of Recreational Respite Inc.,<a href="http://www.recrespite.com/">www.recrespite.com</a>. They describe their careers, say what experience they have with family caregiving, and explain the work of the organizations they founded and why they founded them. Amy describes family caregiver entrepreneurs and Craig explains crowdfunding. They discuss how crowdfunding can help family caregiver entrepreneurs overcome funding challenges. Craig suggests questions that entrepreneurial family caregivers should ask about crowdfunding, and says what cautions he has for them. Amy identifies questions that crowdfunders should ask entrepreneurial family caregivers, and says what cautions she has for them. They both say what more they want to do and see done to promote entrepreneurialism among family caregivers. They share their messages for entrepreneurial family caregivers.
Tools for Family Caregivers for Changing Lives of Family Members with Chronic Pain
Penney Cowan is founder and Chief Executive Officer of the American Chronic Pain Association,<a href="http://www.theacpa.org/">www.theacpa.org</a> She describes her work and her own experience of chronic pain. She explains what chronic pain is and its effects on the people who experience it. She explains the work of the Association. She discusses the challenges that chronic pain creates for the persons who experience it and that it may create for their family caregivers. She explains the ways in which the Association’s tools help persons living with chronic pain, and their family caregivers. She says what more the Association wants to do to help people and their family caregivers with the challenges of chronic pain, and what more she would like see done by the medical and pharmacy professions to help confront the challenges of chronic pain. She shares her message for persons confronting the challenges of chronic pain and for family caregivers concerned about a family member with chronic pain.
When a Family Member is Dying, a Care List for Family Caregivers
Tracy Soloninka, a recognized leader in oncology and palliative care, is a vocal advocate for benefits for families when a family member is dying. She describes her work and experience of family caregiving. She explains palliative care and end-of-life care. She discusses the challenges for family caregivers caring for family members who are dying in a hospice or at home, and says what she’s learned from family caregivers. She explains family caregivers’ information needs relating to medical conditions of their dying family members, support for family members at the end of their lives, and psychosocial and spiritual necessities of the entire family. She explains the concept of a care list for meeting the information needs of family caregivers, and identifies the types of information that a care list would aim to provide. She discusses who should prepare the list and how family caregivers would access it. She shares her message for family caregivers caring for dying family members.
Hope and Healing for Family Caregivers Caring for Family Members with Alzheimer's Disease
Dr. Tiffany Chow is Senior Clinician-Scientist at Baycrest’s Rotman Research Institute and staff Behavioural Neurologist at Baycrest's Sam and Ida Ross Memory Clinic. She authored ‘The Memory Clinic’, <a href="http://www.ow.ly/hzTh1">www.ow.ly/hzTh1</a>, stories of hope and healing for persons with Alzheimer’s disease and their families. She developed a popular website for children who are caregivers to middle-aged parents with dementia, http://ow.ly/hAfEa. She talks about the challenges for family caregivers caring for family members with Alzheimer’s disease, and the help and advice she provides to the family caregivers in responding to their challenges. She discusses the role of family caregivers caring for family members with Alzheimer’s disease, and how doctors view this role. She says what she wants to do and see done to help the family caregivers, and what more she would like to see done by healthcare professions and social services to help the family caregivers. She shares her message for the family caregivers.
A Father and his Accidental Education in Autism
Joel Yanofsky, http://Joelyanofsky.com, is the author of ‘Bad Animals: A Father’s Accidental Education in Autism’. He talks about his experience of family caregiving, his book, ‘Bad Animals’, and why he wrote it. He describes his struggle as a father to enter his son's world of autism. He discusses the challenges for family caregivers caring for children with autism, including the daily frustrations, and the ways he responded. He says what he learned from other parents. He describes the role of family caregivers, and the ways in which the healthcare and social systems see the role of family caregivers. He discusses the help family caregivers need in fulfilling their role, and where they find that help. He says what more he wants to do and see done to help family caregivers. He explains what more he would like to see done by the healthcare professions to help the family caregivers. He shares his message for family caregivers caring for children with autism spectrum disorders.
Active Living Alliance and Attitudes to Activity
Jason Dunkerley, http://www.ala.ca/content/home.asp, and his guide runner Josh Karanja won bronze in the 1500 metres and silver in the 5000 metres for totally blind athletes at the 2012 London Paralympic Games. Andy Shaw, email@example.com, a journalist, is Canadian Press Chief at MEDICA, the world’s largest annual medical trade fair and has been a reporter at six Olympic Games. Jason talks about the Special Olympics and the Paralympics. Andy says how a radio journalist would report on the Special Olympics and the Paralympics. They discuss messages that the Active Living Alliance, which Jason works for, wants to send to family caregivers about the value of active living for family members with special needs and how radio broadcasting can help get the message out and influence attitudes. They say what they want to do and see done to promote active living for children, young persons and adults with special needs, and share their messages for parents of children with special needs.
Growing Up with a Mother with Schizophrenia
Anika Francis was first exposed to schizophrenia at the age of three when her mother, Sakeenah Francis, was diagnosed with it. Sakeenah lived in and out of mental hospitals. For the past fifteen years, she’s been recovering after hitting rock bottom and choosing to stay on her medicine for her sake and her family’s. They both discuss their careers and work. Anika talks about her book, “Love's All That Makes Sense”, http://bridgeross.com/francis.html. Sakeenah explains the speeches she makes for the National Alliance on Mental Illness, http://www.nami.org/. They describe their experiences with schizophrenia and discuss the 25 years of challenges they both experienced and the ways they overcame them. They talk about ways to increase help for children growing up with mothers with schizophrenia and for their mothers. They share their messages for children of parents with schizophrenia and for family caregivers for loved ones with schizophrenia and for mothers recovering from schizophrenia.
Help for Caregivers On the Edge
Dr. Diana Denholm is a board-certified psychotherapist who, for over 11 years, was the primary caregiver to her husband during a series of grave illnesses. She describes her professional background, her experience of family caregiving, and her book, ‘The Caregiving Wife’s Handbook, Caring for Your Seriously Ill Husband, Caring for Yourself’, www.caregivingwife.com. She explains what ‘being on the edge’ means. She discusses challenges for family caregivers caring for partners diagnosed with a serious, long-term illness requiring many years of caregiving. She explains challenges such as getting mentoring, information, and support for quality of life undermined by burnout, stress, and guilt. She discusses challenges for wives’ relationships with their partners that arise with matters of intimacy, uncertainty about difficult things that should be discussed, and deeply felt concerns. She talks about hope and help for family caregiving wives, and what more is to be done to help them.
How to Know that a Charity really is a Charity
Bill Adair is Chief Executive Officer of the Spinal Cord Injury Ontario, http://www.sciontario.org/. Susan Manwaring is the National Chair of Miller Thomson’s Charities and Not-for-Profit Group, www.millerthomson.com/charities-nfp. They discuss the definition of charity and the accountabilities and responsibilities expected of one. Bill describes the obligations that his charity applies to itself. Susan discusses the legal principles governing charities. They identify the things that family caregivers should consider when, for example, contributions to a charity will be requested as a way of honoring the life of a deceased family member. They explain the types of questions that families should ask of a charity. They discuss what family caregivers and donors can do if the information they receive in response to their questions seems insufficient. They say what more can be done to help family caregivers considering a charitable donation, and share their messages for family caregivers.
Voice for Family Caregivers in the Mental Health System
Kathy Walker, a registered social worker, was a mental health case manager for 15 years. She’s a single parent and mother of a son with schizoaffective disorder. Dr. Lisa Doupe’s medical practice includes forensic psychotherapy. She specializes in care for family caregivers and their family members whose high-risk behaviors involved them with the justice system. They discuss situations in which family caregivers caring for family members with serious mental illnesses experience challenges in getting their questions answered by physicians and in providing information to them. To overcome the challenges, they propose a procedure for good consultations in mental healthcare. They discuss ways in which physicians, their patients and family caregivers could be encouraged to use it. They say what more they would like to do and see done to increase help for family caregivers in getting their voices heard as individuals and as a community, and they share their messages for family caregivers.
Wife and Children as Family Caregivers
Steven Holmes is a son, husband, father and grandfather. He describes his career and his role as a member of a family involved in family caregiving. He explains his mother’s role in the family caregiving, and the ways in which his mother cared for his father and for the particular challenges his father faced. He discusses the effects of time and aging on his mother and her caregiving. He explains the support his mother most strongly relied on throughout, and its influence on the family. He describes the family’s concerns that arose for their mother with the passing of time and with aging. He explains the help the family sought from the healthcare and social-services systems. He describes their experience with the help, and says whether he believes that other families have similar experiences. He says what more he would like to see done to help family caregivers of family members as they age at home, and shares his message for family caregivers caring for family members aging at home.
Empowered Family Caregivers Working with Family Physicians
Dr. Anna Reid, President, 2012–2013, of the Canadian Medical Association http://www.cma.ca/, explains the path that led her to acclamation as President and her role in the position. She highlights medical conditions for which family physicians and family caregivers need to closely communicate. She says how family physicians as a profession view family caregiving and explains concerns they may have in working closely with family caregivers. She summarizes the Association’s positions, policies and priorities for family physicians and family caregiving. She discusses family caregivers in the role of assistants to family physicians providing medical care for their family members. She says what she would like to do and see done to help family caregivers and family physicians work more closely together caring for family members with medically incurable mental or physical illnesses. She shares her message for family caregivers caring for family members with medically incurable illnesses.
Family Caregiving for the Medically Fragile
David Ashdown has been involved since 1990 in Community Concerns for the Medically Fragile, http://www.ccmfonline.com/. He describes his involvement and his own experience with family caregiving. He identifies the most common medical conditions that cause individuals to be medically fragile and the stages of life at which they are affected. He talks about the challenges faced by medically fragile individuals, by their families and family caregivers, and by healthcare and social systems that provide help. He says how CCMF helps with the challenges, and uses activity centers, outdoor activities, art and music therapies, and other services to enable a meaningful life for the individuals it cares for. He describes the challenges CCMF faces in generating funding. He says what more he would like to do and see done to help medically fragile individuals and their families and family caregivers, and shares his message for family caregivers caring for family members who are medically fragile.
Is our Mom on Drugs?
Johanna Trimble, http://www.isyourmomondrugs.com, is a passionate patient advocate and a World Health Organization Patient Safety Champion. Donna Davis is Co-chair of Patients for Patient Safety Canada, http://www.patientsforpatientsafety.ca/, and a mother, wife, and nurse. They describe their backgrounds, experience as family caregivers and work. They discuss challenges created by medications prescribed for elderly persons living in residential care facilities, and identify the most serious for elderly people, professional caregivers and family caregivers. They explain other challenges that arise for family caregivers, and discuss the roles of family caregivers in meeting the challenges created by medications prescribed for their elderly family members, including questions to ask doctors and nurses, and what to do if the information seems insufficient. They say what they want to do and see done to increase help for family caregivers, and share their messages for family caregivers.
Euthanasia Prevention—What Family Caregivers Should Consider
Dr. Will Johnston has practiced family medicine for over 30 years. He’s Chair of the Euthanasia Prevention Coalition of BC, www.epcbc.ca, . He describes his career and experience with family caregiving, and what led him to euthanasia prevention. He discusses the Coalition’s work and his work as Chair. He explains euthanasia and why what it implies needs to be discussed. He says what he sees as the most influential attitudes in society. He explains ‘state-sponsored suicide’, and why family caregivers should be aware of its implications. He advises family caregivers how to interpret physicians’ predictions for particular end-of-life conditions. He discusses decisions to let nature take its course in end-of-life circumstances. He says what more he would like to do and see done to help family caregivers caring for family members in end-of-life circumstances, and shares his message for family caregivers and mental healthcare and social-services professionals about end-of-life circumstances.
See Me Not My Disease—What Family Caregivers Should Know About Alzheimer’s disease Stigma
Mary Schulz is Director, Information, Support Services and Education at the Alzheimer Society of Canada, www.alzheimer.ca. She talks about her career, own experience with family caregiving and what led to her interest in family caregivers caring for family members with Alzheimer’s disease. She explains her help for family caregivers caring for family members with Alzheimer’s disease. She describes the Society’s programs for combating stigma in Alzheimer’s disease. She identifies stigma-related challenges their consequences, including those arising in the healthcare and social-services systems, which affect persons with Alzheimer’s disease and their family caregivers. She explains methods of combating stigma and the challenges it creates for persons with Alzheimer’s disease, their family caregivers. She says what more remains to be done to combat stigma related to Alzheimer’s disease and shares her messages for mental healthcare and social-services professionals and family caregivers.
Priorities for Autism Speaks Canada and Autism
Frank Viti and Jill Farber are, respectively, President and CEO, and Vice-Chair, Board of Directors of Autism Speaks Canada, www.autismspeaks.ca. They describe their personal backgrounds and their experience with family caregiving. They explain the work of Autism Speaks Canada and the services it provides for children and adults living with autism and for their family caregivers. They explain the challenges created by autism for children and adults and for family caregivers. They discuss the effectiveness of mental healthcare services in helping them all meet the challenges. They describe Autism Speaks Canada`s priorities for helping them all meet the challenges. They talk about ways to increase help in meeting the challenges, and they both share their messages for family caregivers caring for family members living with autism’s challenges.
Mood Disorders, Stigmatization and Family Caregiving
Dave Gallson is the Associate National Executive Director of the Mood Disorders Society of Canada, www.mooddisorderscanada.ca. He explains his involvement with mental health. He describes the Society’s mission and its programs, the people these serve, and the benefits. He gives examples of mood disorders and the challenges for persons with them and for their family caregivers. He says how stigma is experienced by persons living with mood disorders, and how it affects them, their families and their family caregivers. He discusses stigma in the workplace, in the wider community, and in the healthcare system, and how it can be combated. He discusses education about mental illness for children in school as a way to combat stigma. He says what more he would like to do and see done to help combat stigma of persons with mood disorders and shares his messages for healthcare professionals and for family caregivers caring for a family member living with a mood disorder.
Patients' Association of Canada, Families and Family Caregivers
Dr. Sholom Glouberman is President of the Patients’ Association of Canada, http://patientsassociation.ca/. He describes his experience with family caregiving. He explains the Association’s mission and the needs it’s responding to, and its services and their benefits. He identifies the challenges created by medically incurable illnesses for patients and their family caregivers. He discusses the benefits of bringing patients and their family caregivers together in one organization led by the Association. He talks about the possible challenges from healthcare systems, professions and institutions, and from governments and their healthcare-related organizations. He describes the major strategies he advocates. He explains what he would like to do to help family caregivers caring for family members with medically incurable illnesses by joining them in one organization, and he shares his messages for healthcare professionals and family caregivers.
Who Should Own Our Electronic Medical Records?
Susan Eng is Vice President for Advocacy at CARP, the national, non-partisan, non-profit organization committed to advocating for social change, http://www.carp.ca/. Jeff Curtis is the Chief Privacy Officer for Sunnybrook Health Sciences Centre, a 10,000+ employee acute-care, research and teaching hospital in Toronto, www.sunnybrook.ca. They discuss the question of who, if any one, in healthcare and hospitals now owns individuals’ electronic medical records, and what ownership actually means in various healthcare situations. They highlight privacy, its meaning, and its challenges in the world of electronic medical records. They talk about the benefits that electronic medical records bring or should bring to persons with serious, medically incurable illnesses who are living at home or in the care of hospitals, and to their family caregivers. They discuss ways to help family caregivers and their family members in meeting the challenges brought to them by electronic medical records.
Principles for Training Memory--What Family Caregivers Should Know
Tony Buzan, an internationally renowned expert on the thinking process, is the world’s foremost expert in Mental Literacy, http://www.thinkbuzan.com/intl. He describes his career, his own experience with family caregiving, and what led to his interest in training memory. He explains his work in developing, applying and promoting memory training and describes the memory training services he and his team provide, the people to whom these services are provided and how the services benefit them. He discusses memory challenges that affect children, young adults, and all adults as they age normally. He explains the principles for memory training to improve memory at various ages, and help for family caregivers caring for family members affected by incurable health conditions. He says what more he would like to do and see done to improve memory of children and adults, and he shares his messages for mental healthcare professionals and family caregivers.
Safe Social Zone for Children with Autism and other Learning Differences
Sara Winter is mom of two boys, one with ADHD, anxiety and celiac disease with a twelve year-old nephew on the autism spectrum. She created http://www.squag.com/, to encourage mindfulness, self-reflection and original thinking for kids with autism. Jonathan Schwartz, prior President and CEO at Sun Microsystems, is co-founder and Chief Executive Officer of CareZone, https://carezone.com/, developed for people like him who must simultaneously care for children and parents but find social networking sites insufficiently targeted toward the act of caregiving. They talk about their web services, discuss the benefits and challenges that computers connected to the internet bring to children and to family caregivers. They describe the help needed by children and family caregivers to make more use of computers connected to the internet, and say what more they want to do and to see done to increase the help for children and family caregivers. They share their messages for family caregivers.
Family Caregiving, Employee Health and Safety, and Productivity
Dr. Pamella Thomas is Chief Medical Officer and Executive Director of the Institute for Health and Productivity Management’s WorkPlace Center for the Working Caregiver, http://is.gd/d5go2D. She describes the WorkPlace Center, the services it provides, the people it serves, and how they benefit. She discusses the challenges faced by family caregivers caring for working family members, what makes the challenges difficult, and the ways in which she helps family caregivers in meeting these challenges. She explains the consequences of the challenges if family caregivers do and don’t receive and act on the help they need. She says how she would like to see more help provided for family caregivers caring for working family members. She shares her messages for family doctors and other healthcare professionals about the role of family caregivers caring for working family members, and her message for family caregivers caring for working family members.
Mental Illness, Treatment, Recovery and Stigma
Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, http://www.schizophrenia.ca/, and a director of the Mental Health Commission of Canada. Dr. Mark Ragins is the Medical Director at the MHA Village Integrated Service Agency in Long Beach, California, http://www.mhala.org/mha-village.htm, an award-winning recovery-based mental health service. They explain their work in helping people combat stigma and its effects. They highlight challenges stigma creates for persons with mental illnesses such as schizophrenia and for their family caregivers. They explain the types of help needed by persons and their families to successfully respond to their challenges, and the consequences if persons with mental illnesses such as schizophrenia do not get or act on the help. They say what they would like to see done to increase efforts to combat the challenges and negative consequences created by stigma for persons with mental illnesses, and share their messages for family caregivers.
Compassion Fatigue and Chronic Sorrow
Jan Spilman, MEd, is a Registered Clinical Counsellor, Compassion Fatigue Specialist, and Mental Health Educator, www.caregiverwellness.ca. She discusses her professional career, her experience with family caregiving, what led her to become a Compassion Fatigue and Chronic Sorrow Specialist, and what her work involves. She describes compassion fatigue and chronic sorrow, and the challenges that compassion fatigue creates for family caregivers. She discusses the consequences for family caregivers if they don’t get effective help with their challenges. She explains the help needed by family caregivers with compassion fatigue. She describes her Caregiver Wellness Workshops, and describes the ways in which these help. She says how she would like to see family caregivers helped more. She shares her message for healthcare and social-services systems and her message of hope for family caregivers confronted by the challenges of compassion fatigue and chronic sorrow.
Circles of Support for Mental Illness
Lee Helmer directs a peer-led organization, T.E.A.C.H., (Teach, Empower, Advocate for Community Health), in Halton Region, Ontario, Canada. He describes his own experience with family caregiving and his own mental and brain health challenges. He outlines the mental health conditions that T.E.A.C.H. helps with, explains the help needed and provided for these conditions, and describes the groups that are helped. He explains the challenges created by the conditions for persons and their family caregivers, and the consequences for them all if their challenges are not effectively helped. He explains the purposes of the help that T.E.A.C.H. provides, and gives examples. He says what more help he would like to see provided by the healthcare and social-services systems to persons and their family caregivers confronted by their challenges. He shares his message for healthcare and social-service professionals and his message of hope for family caregivers and their family members.
Family Caregiving, Peer Support and Mental Health and Addiction Challenges
Steve Kalaydjian channels his energy to mental health after 15 years of working in information technology. He describes his own experience with family caregiving for problems of mental and physical health and of addiction challenges. He explains his voluntary work in peer support for mental health and addiction challenges. He describes the challenges and their consequences which he and his family experienced. He discusses his family’s experience of getting help. He says what he’s learned about help most needed by family caregivers and their families experiencing problems of mental health and of addiction, and about the ways it’s provided. He says what more help he’d like to see provided by the healthcare and social-services systems to family caregivers and their families experiencing the challenges of mental health and addiction problems. He shares his message for healthcare and social-service professionals and his message of hope for family caregivers and their family members.
Helping Family Caregivers Caring for Children with Mental Health Challenges
Dr. Marshall Korenblum is Psychiatrist-in-Chief of The Hincks-Dellcrest Centre, http://www.hincksdellcrest.org/ABC/Welcome, a children’s mental health treatment, research, and teaching center in Toronto, Canada. He explains how his work at the Centre involves him with family caregivers. He describes the difficulties faced by children and their family caregivers, the most difficult challenges they face, and the outcomes typical of their mental health conditions. He highlights the care children need and says what determines whether a child should be cared for at home or in a residential facility. He explains the ways in which family caregivers can be helped by psychiatrists when children are living at home or in a residential facility, and why helping them is important. He says what more he would like done to help family caregivers caring for children with mental health challenges, and shares his messages for the healthcare system, healthcare’s professionals, and family caregivers.
Dementia and Family Caregiving--Unmasking the Spouse’s Grief
Eleanor Silverberg is a Counseling and Grief Specialist for Care Providers, www.eleanorsilverberg.com. Tibor Maknyik is family caregiver for his wife with Alzheimer's disease, which began in 1997 when she was 53. They discuss the losses that family caregivers experience in caring for a spouse with the disease. She explains the losses family caregivers experience. He describes the most difficult losses he experienced. She describes her specialized professional approach to helping family caregivers with their losses. He explains the factors in his life that led him to turn to Eleanor for help, and at what point in his family caregiving he approached her. She summarizes the benefits that she wants her approach to bring to family caregivers. He says how her services helped him in coping with his losses. They say what they want to see done to increase help for family caregivers caring for spouses with dementia like Alzheimer’s disease. They share their messages for family caregivers.
Dealing with Diabetes, Diet and Daily Living, How Family Caregivers Help
Dr. Ian Blumer is a diabetes specialist, www.ourdiabetes.com. Kim Banting is a Registered Nutritional Consultant, http://is.gd/nAw32K. They describe their personal backgrounds, experience of family caregiving, and work in diabetes. They discuss diabetes trends, how unhealthy diet and lifestyle harmfully interact with diabetes. They explain what family caregivers should know when a family member has diabetes or is at risk of it. He says why a healthy lifestyle should include the ways in which persons with diabetes and their family caregivers interact with physicians and the healthcare system. She identifies the key things that family caregivers should know about good nutrition for children and vulnerable adults with diabetes. They both say what more they want to see done to advance attention to diet and lifestyle for children, adults and vulnerable seniors with diabetes or at risk of developing it. They share their messages to family caregivers with a family member with diabetes.
Machine-Assisted Breathing at Home--What Family Caregivers Should Know
Jennifer Harrison is Professional Practice Advisor for the College of Respiratory Therapists of Ontario, www.crto.on.ca. Lisa Taylor is Associate Registrar for the College of Dental Hygienists of Ontario, www.cdho.org. They describe their personal backgrounds, professional careers, and experience with family caregiving. They explain the work of respiratory therapists and dental hygienists. Jennifer discusses health conditions for which respiratory therapy is commonly used at home. Lisa explains why mouth health is important for machine-assisted breathing at home. They discuss the challenges to respiratory therapy and mouth health during machine assisted breathing at home. They highlight prevention of things going wrong, and explain the role of family caregivers in prevention. They say what they want to see done to advance mouth health and respiratory therapy for persons receiving at machine-assisted breathing at home. They share their messages for family caregivers.
Moving from Caregiver to Care Partner
Dr. Teena Cahill, www.teenacahill.com, is author of “The Cahill Factor: Turning Adversity into Advantage”, a powerful personal story about wisdom, resilience, and caregiving. She talks about her professional career, her own experience with family caregiving, and identifies her publications that focus on ways for family caregivers to move from caregiver to care partner. She discusses the challenges for family caregivers and says what she’s learned from other family caregivers, and explains why moving from caregiver to care partner is so beneficial. She describes the ways in which family caregivers can move from caregiver to care partner. She says how moving from caregiver to care partner benefits the ways the family caregiver and the family member interact with support from outside the family, such as healthcare and social services. She shares her messages for the healthcare system, for healthcare and social-service professionals, and for family caregivers and their family members.
Identity Theft and Vulnerable Family Members—What Family Caregivers Should Know
Krista James is the National Director of the Canadian Centre for Elder Law, www.bcli.org. She describes her personal background, professional career, and her experience of family caregiving. She explains the Centre’s work. She discusses ‘Elder Law’ and how is it is used to protect seniors. She talks about the ways in which identity theft occurs and how it harms seniors and their families. She identifies the commonest ways in which a senior’s identity is stolen and the commonest types of harm that results to the senior and the senior’s family. She talks about ways for preventing theft of identities of seniors and what to do if a senior’s identity seems to have been stolen. She discusses increasing protections for seniors and improving help for family caregivers caring for family members vulnerable to identity theft. She shares her messages to governments and others concerned with elder law about improving protection of seniors against identity theft, and to family caregivers.
Naturopathic Medicine and Family Caregiving
Dr. Allissa Gaul is a Naturopathic Doctor, www.resonance-wellness.com. She describes her professional career, and the profession of naturopathic doctors and how this is evolving. She explains her role as President of the College of Naturopathic Doctors of Alberta, and the College’s work. She talks about the health concerns of children that are most common in her practice, the types of care she provides for them and for children with special needs, and how she works with their family caregivers. She discusses naturopathic care for adults with long-term or terminal illnesses, identifies the commonest of these, and explains her approach to their care. She describes how she works with family caregivers with family members who have terminal illnesses and who are receiving palliative care. About the services of naturopathic doctors, she shares her messages for the healthcare system, other healthcare professionals and family caregivers.
Autism, Police and Emergency Services
Staff Sergeant Jamie Dunlop, a 16-yr member of the Ottawa Police Service, is in charge of a platoon of emergency response officers, http://ottawapolice.ca/en/Community/Autism/AutismRegistry.aspx. Dennis Debbaudt, http://www.autismriskmanagement.com, is a professional investigator and journalist who turned his investigations to autism when his son, Brad, now a young man, was diagnosed with it. They explain risks for individuals with autism and challenges created for their family caregivers. They discuss their work in autism risk, safety management and law enforcement with individuals whose autism brings them to the attention of the police. They explain methods for preventing or minimizing risks that autism creates for individuals and for helping family caregivers manage the challenges. They talk about ways to increase support for families, family caregivers and family members living with autism, and share their messages for family caregivers with family members living with autism.
Depression, Work-Related Stress and Family Caregiving
For twenty years, Jan Wong had been one of the Canada’s best-known reporters. Then one day she turned in a story that set off a firestorm of controversy, including death threats, a unanimous denunciation by Parliament and a rebuke by her own newspaper. For the first time in her professional life, she fell into a severe clinical depression. Yet she resisted the diagnosis, refusing to believe she had a mental illness. As it turned out, so did her company and insurer. With humor, grace and insight her book, Out of the Blue, http://www.janwong.ca/outoftheblue.html, tells the harrowing story of her struggle with workplace-caused depression, and of the eventual emergence the book. Hear her discussing her experience with depression and the factors to which she attributes it; her views on work-related stress and what can be done about it; her thoughts on help for people with depression; and her messages for healthcare systems, employers and family caregivers.
Support for Families after Workplace Tragedy
Shirley Hickman in 2002 co-founded Threads of Life, A Workplace Tragedy Family Support Association, http://threadsoflife.ca/. She’s Executive Director and Family Program Manager. Fran DeFilippis, in 2001, after the birth of her second child, started a part-time chocolate truffle business. Shirley and Fran both experienced workplace tragedy. They describe their lives and work with Threads of Life. They discuss workplace tragedy’s consequences, and the needs for support and the challenges encountered by families and family caregivers in accessing support from insurance, worker compensation, employers, healthcare and other systems. They explain the support that Threads of Life provides for families and family caregivers after workplace tragedy, and the support that Threads of Life itself relies on. They talk about ways to increase support for families and family caregivers after workplace tragedy, and share their messages for families and family caregivers.
Clinical trials—What Family Caregivers Should Ask
Sharon Brigner is a Deputy Vice President for the Pharmaceutical Research and Manufacturers of America, www.phrma.org, a trade association in Washington, DC. Joseph Hammang is Senior Vice President, Life Sciences for ML Strategies, www.mlstrategies.com. They talk about the organization of clinical trials, the people who are the subjects and how they are recruited. They discuss permissions and suggest questions that family caregivers should ask about purposes and procedures of clinical trials involving family members, effects they should expect and watch out for, information that is collected about family members participating in a clinical trial, and the action to take if something appears to be going wrong. They talk about ways for increasing the benefits of clinical trials and the protections required to maintain the confidence of family caregivers and their family members, and everyone, and share their messages for family caregivers.
A Psychiatric Hospital Cemetery, Graves and Memories
Megan O’Toole, a veteran Canadian journalist, wrote the story of a psychiatric hospital cemetery. She describes the people interested in the hospital’s patients buried in the cemetery, and some of their stories. She explains the future for the cemetery and how it will be cared for. She describes what she learned from the story. From a media perspective, she talks about the importance of the history of the cemetery and of the hospital’s care for people with mental illnesses and developmental disorders. She identifies topics the media should pay more attention to, and why. She says how more media interest in the history of care for mental illnesses and developmental disorders could help improve their care today. She explains why memories evoked by the psychiatric hospital cemetery are important, and what family caregivers can learn from them when they are caring for family members with the types of mental illnesses and developmental disorders of the people buried in the cemetery.
The First Collaborative International Resource Directory for Dementia, Minneapolis
Lori La Bey is the founder of the First Collaborative International Resource Directory for Dementia, in Minneapolis. She describes her professional career and experience of family caregiving. She discusses family caregivers’ needs in caring for family members living with dementia such as Alzheimer’s disease, and explains what motivated her to create the Directory. She describes the services it provides, who it is intended to serve and where, and which of her other services it works with. She talks about the people who are involved in creating it, how it operates and whether she is looking for volunteers to get involved or for additional resources of any kind. She describes its users, and their needs and responses. She says why it is so important, who in the wider community should know about it, and why should they know about it. She explains how she wants it to work with healthcare and other professionals. She shares her message to family caregivers. www.AlzheimersSpeaks.com
Shattered Love, a Film about Pain and Devastation Caused by Alzheimer Disease
Dawn Fields is an independent film producer and the president of Palm Street Films, a feature film production company based in Los Angeles. She talks about her career and as a film producer and shares her thoughts about family caregiving. She explains why she got involved in producing the film ‘Shattered Love’. She talks about the film’s story, the pain and devastation caused by Alzheimer’s disease. She says why it engaged her, and describes the reactions of her colleagues involved in the film. She describes the audience she’s thinking of for the film and its message for particular communities and people. She says who she would particularly like to see it, and why. She shares the message of the film for family caregivers and for people who are starting to be worried about developing Alzheimer’s disease. She explains why the film ‘Shattered Love’ matters, where people can watch it, and the help she needs in producing it.
Death with Dignity
Micheal Vonn is a lawyer and the Policy Director of the British Columbia Civil Liberties Association. She describes her work in civil liberties, says what ‘death with dignity’ means to her and why she become involved with it as a legal and social matter. She explains the case the Association filed to change law on medically-assisted dying. She discusses the outcome and its significance for patients and family caregivers. She says what ‘death with dignity’ means and doesn’t mean, explains why the association focused on medically-assisted dying, and what the people who participated in the case wanted the Court to understand. She explains when medically-assisted dying should be considered, by whom it should be considered, and the chief objections to it. She says what she would like to see done to advance dignity in death. She shares her message for family caregivers with family members whose health conditions are causing them anguish as they face dying of serious and incurable illness.
Creating Voice for Family Caregivers
Stuart Hickox is Founder and President of One Change, a charitable foundation with an empowering message, Simple Actions Matter. Julie DiNardo, a dental hygienist with an independent dental hygiene office, is founder of the charity Woolies for New B's and, with her family, has been foster parent to many children. Stuart explains how One Change mobilizes volunteers and community groups. Julie explains her charity and how it works with family caregivers. They discuss the financial challenges faced by family caregivers, and the ways in which family caregivers as a community could use voice to get more financial support for family caregivers. They discuss the ways in which family caregivers can get their voices heard by healthcare’s decision makers. They explore the future of voice for family caregivers at a time when healthcare systems are short of money and therefore encouraging family caregivers to care for their loved ones at home, and share their messages for family caregivers.
Family Caregivers Organizing and Coordinating their Caring
Jonathan Schwartz was President and CEO at Sun Microsystems. He co-developed CareZone for people like him who must simultaneously care for children and parents. He explains how CareZone helps family caregivers manage information about family members’ health and progress, and ensure that medications are taken as prescribed, that all treatments are followed, and that side effects are reported to the physician. How it helps family caregivers manage medical appointments and home visits. How it protects family members’ information. How it helps family members who don’t want their information shared too widely. He discusses the future of CareZone and information technology in being more helpful to family caregivers, and in helping protect the health, wellbeing and finances of family caregivers. He identifies the help healthcare systems should give to family caregivers to enable them to use information technology as it develops. He shares his message about CareZone for family caregivers.
Employment for Students with Special Needs
Joe Henry, Manager of Student Access at Humber College, describes his work in disability services in post-secondary education. He explains the challenges students with special needs encounter in college education and the ways in which health conditions complicate the special needs. He describes how his services help the students. He discusses support needed by the students as their college education comes to an end and they look for work. He talks about stigmatization of certain types of health conditions as a challenge for young people with special needs seeking work. He discusses the transition between education and work, the support students need from their families, the adjustments family caregivers need to make, and how he works with them and their family members. He says what more he thinks should be done to help young people with special needs to find work that enables them to make the very best of their abilities and shares his messages for students and family caregivers.
SpringFree Trampolines and Children with Special Needs
Steven Holmes is the Chief Bouncing Officer of Springfree Trampoline. Rosemarie Senisi is Mom of 4 children, 3 living with neurological conditions. They discuss their backgrounds and experience with family caregiving and Springfree Trampolines. They talk about Springfree Trampolines, who uses them, and how and why. They explain the special needs for which Springfree Trampolines are recommended, why safety is such an important consideration, the benefits created for children with special needs, the responsibilities arising for family caregivers whose children use them, and how family caregivers are encouraged to use them. They explain the arrangements for access to Springfree Trampolines, and the special precautions and help to ensure that children with special needs get the full benefits. They say what more they would like to see done to promote physical activity for children with special needs. They share their messages to family caregivers caring for children with special needs.
Remembrance of Psychiatric Patients Past
Dr. Geoffrey Reaume is Associate Professor in the Critical Disability Studies graduate program at York University where he’s taught since 2004. His work as historian, author, video producer and playwright are all informed by his experiences as a psychiatric patient as a teenager and young adult. He explains the medical diagnosis he was given as a young person and how it affected his life. He discusses the history of treatment of people whose medical diagnoses led to confinement in asylums. He says what he learned from his examination of the Toronto Hospital’s medical files, 1870 to 1940. He says what we can learn from the history of caring for mental illness about family caregiving, the medical and social professions, and society. He identifies things that should be done better by the medical profession, governments and health care planners in supporting and caring for persons with mental illness, and shares his messages for persons and their family caregivers.
Justice for Persons Whose Mental Health Conditions Render Them Especially Vulnerable to Abuse
Peter Rosenthal is a lawyer widely experienced in matters of social justice who is also Professor of Mathematics at the University of Toronto. Suzan Fraser is a lawyer specializing in constitutional and administrative law with over 15 years’ experience in public interest, social justice, children’s rights and mental health issues. They discuss the legal matters they deal with that relate to persons with mental illnesses which lead to risky effects, such as behaviors over which the person has little or no control. They talk about legal cases in which risky effects of mental illnesses have found their way into the justice system, and what the outcome was. They discuss the types of legal actions and their strengths and weaknesses relative to responses to types of risky effects of the illness. They highlight the changes they think are needed in the justice system and their messages for family caregivers caring for family members whose mental illnesses have involved the justice system.
How to Survive Caring for Aging Parents
Jacqueline Marcell wrote 'Elder Rage', her best-selling book, out of her experience caring for her parents with Alzheimer's disease undiagnosed for over a year. She talks about her professional career and her life as a family caregiver involved with family members with Alzheimer’s disease. She explains what Elder Rage is and what makes it such a challenge for family caregivers. She discusses the range of challenges that arise for family caregivers caring for a family member with Alzheimer’s disease, such as the first things that family caregivers notice, high-risk behaviors, and the particular challenges when the family member lives in a care facility. She explains how family caregivers caring for a family member with Alzheimer’s disease should get the best of help from health professionals and services available to them. She says what more needs to be done to help, respect and support family caregivers caring for Alzheimer’s disease, and shares her message for family caregivers.
Alzheimer Disease, Family Caregivers, Challenges, Needs, Priorities
Naguib Gouda is Chief Executive Officer of the Alzheimer Society of Canada. Mary Schulz is the Society’s Director of Information, Support Services and Education. They explain the priorities for the Society. They highlight the challenges that Alzheimer’s disease creates for family caregivers, families and family members. They explain the particular challenges of stigma, of family members’ interpreting and acting promptly on the early warning signs of Alzheimer’s disease, of the high-risk behaviors it generates, of the strain on family caregivers’ own mental, physical and financial health, of getting trustworthy and timely information, and of navigating the healthcare and social systems. They describe the Society’s services to help family caregivers with these and other challenges. They identify the responses they’d like to see from government, healthcare and social systems. They say that these systems can learn from family caregivers. They share their messages for family caregivers.
Lyme Disease Challenges for Family Caregivers and Family Members
Jim Wilson, President and founder of the Canadian Lyme Disease Foundation, is himself a victim of Lyme disease and the father of victims of Lyme disease. Janet Sperling is a trained entomologist whose 15 year-old son fell desperately ill. After months without a clear diagnosis, she and her husband confronted the possibility of Lyme disease. Jim and Janet discuss the serious challenges that Lyme disease creates for children, adults, family caregivers and families. They describe most important things that family caregivers, families, and family members should know about the disease, and where they can they find information about services and solutions for the challenges. They discuss communications with doctors which, they stress, should involve family caregivers giving information to doctors as well as family caregivers taking the advice of doctors. They identify the responses they want to see from healthcare systems and governments and they share their messages for family caregivers.
Justice for Family Caregivers After Years of Family Caregiving
Kathy Kelly is Executive Director of Family Caregiver Alliance, a national US nonprofit organization providing direct family caregiver support services, public policy development, research and public awareness. Marilyn Pytka found herself in financial, physical, professional and personal ruin after spending over 20 years as her mother’s family caregiver. They highlight their backgrounds and experiences of family caregiving. Kathy explains the Family Caregiver Alliance and its work. Marilyn analyzes how well family caregiving is understood and how much family caregivers are respected. They discuss the challenges of family caregiving that may lead to injustices in things such as finances, health, and services, and within the family. They explain the most important solutions that are needed to prevent the challenges from creating these injustices. They say what more they would like to see done to promote justice for family caregivers. They give their messages to family caregivers.
Home Automation and Cybercrime
Alan Majer is the founder of GoodRobot.com. John Wunderlich is an independent information and privacy consultant in Toronto. Alan explains how home automation benefits family caregivers caring for family members with health challenges. John explains cybercrime risks of most concern to family caregivers caring for family members with health challenges. They discuss trends in home automation and cybercrime, the links between the two, and how these might harm family members whom family caregivers are caring for. Alan highlights questions about risks of cybercrime that family caregivers should ask providers of home automation. John identifies questions about privacy, security and worrying incidents that family caregivers should ask, and who they should ask. Recognizing the increasing challenge of ensuring that the benefits of home automation are not undermined by cybercrime, they identify priorities for the home automation industry, governments and their agencies, and family caregivers.
How and where family caregivers find the information they need
Wendy Newman is currently Senior Fellow, Faculty of Information, University of Toronto, following a career in librarianship and public policy advocacy. Carolyn Murray is a musician, composer, artist, community volunteer and family caregiver for her 95-year-old parents and her husband following a serious accident. They explain the information needs of family caregivers and the types of information available to them. They discuss the sources of information needed by family caregivers and describe experience in looking for the information. Using family caregiving guidelines as an example, they examine ways in which the information needs of family caregivers can be met. They describe the standards and precautions that should be applied to information that family caregivers rely on. They say how the information resources should be built to meet the needs of family caregivers. They share their messages for family caregivers in light of their growing importance and their diverse needs.
ADHD, Autism, Obesity and Sleep Disorders
Dr. Lance Levy is a Pediatrician, Bariatric Nutrition specialist, and researcher with a multi-disciplinary practice in Toronto specializing in the treatment of severely overweight children and adults. Kim Banting is a Registered Nutritional Consultant who graduated with honors from the Global College of Natural Medicine and a member of the International Organization of Nutritional Consultants. She began her own business, Flourish, in 2009. They describe their work with young people with challenges such as ADHD, Autism, Obesity and Sleep Disorders. They highlight what’s known about the trends and links among the challenges and disorders as these relate to young people. They discuss what current research is revealing. They talk about the role of family caregivers in caring for family members with the disorders and identify information needs of family caregivers. As activists, they state the priorities they see for family caregivers, the healthcare system and the food industry.
Family Caregiving and Aging at Home
Lucie Shaw and her husband David own and operate Nurse Next Door in Mississauga, Ontario. She explains why they decided to go into the business and how personal experience of family caregiving influenced them. She describes how she and her team work with family caregivers. She explains what home actually means in ‘aging at home’. She highlights the needs of family caregivers and the challenges they face in caring for family members aging at home, and for the family members they’re caring for, and identifies the services and solutions for needs of families in the various home arrangements. She describes the ways in which she sees family caregivers’ needs evolving as more and more of them care for family members aging at home. She says how she thinks the healthcare and social systems should enhance the support they provide for family caregivers caring for a family member aging at home. She gives her message for family caregivers caring for a family member aging at home.
Blind Students Class Action against a School for the Blind and Visually Impaired
Jonathan Bida is a lawyer in the class action group at Koskie Minsky LLP. Bob Seed is the lead plaintiff in a class-action against the Brantford school for the blind and visually impaired, which he attended from 1954 to 1965. They explain what the class action seeks to achieve, and how the allegations relate to experience of care at the school. They explain the class action and its different stages and what the court will be asked to decide. They discuss responsibilities and attitudes. They talk about the ways in which staff and administrator responsibilities did or should reflect standards of care. Regarding care for the students, they discuss the role of family caregivers. They discuss how the class-action could help remove any remaining stigmatization of persons with vision and hearing challenges. They say what former and current students can do to get involved in the class action, and what the class-action’s messages are for persons with special needs and for family caregivers.
Starfish, the Making of a Movie about Family Caregiving and Community Support
Bill Clark, a British movie maker, talks about Starfish, his movie of family caregiving and community support. He describes his background, career, current work in movie-making, and experience of family caregiving. He explains what Starfish is about, the stage its production has reached, and the future he sees for it. He discusses its background, where the name comes from, what led him to make it, and the support he receives in making it. He explains what’s meant by ‘back story’, what this is for Starfish, and what made it so appealing to him. He talks about the back stories of the people whose stories are told in Starfish. He tells us about the making of Starfish and the challenges he encountered, and his ambitions for it. He talks about using movies to tell the stories of family caregiving and its community of family caregivers, and what makes stories successful for movies. He shares his message for family caregivers with powerful stories like those in Starfish. www.origamifilms.com
Hospitals Communicating with Family Caregivers
Mary Jane McNally is the Senior Director of Nursing at Toronto Western Hospital and University Health Network, where she provides leadership for advancing academic nursing practice, education, and research. She describes the research she and her colleagues at the hospital are conducting. She discusses the implications of the research for family caregivers. She talks about the evolution of communications with family caregivers whose family members are patients of the hospital, and about role the family caregiver has as advocate for the family member. She discusses the hospital’s communications with family caregivers as a community engaged with the hospital, and says how she sees the evolution of role of modern internet communications. She shares her messages for family caregivers, community-based professional caregivers and caregiving organizations regarding the importance of the place of family caregivers as healthcare team members in the changing world of hospital-based healthcare.
Promoting Equality for Persons Labeled Developmentally Disabled and their Family Caregivers
Kory Earle, President of People First of Canada, explains why his organization is needed in today’s society. He describes his own life. He explains how labels like ‘Developmentally Disabled’ cause labeled people not to be viewed as people, not to be listened to, and not to be understood. He discusses the challenges for labeled people when they try to make decisions for themselves. He identifies the rights that labeled people and their families lack. He discusses changes needed to help labeled people join together, keep themselves informed, get their voices heard, support each other, be better respected by the community and to live a good life. Referring to the class-action suits against the Province of Ontario brought by labeled people and their families regarding the care or lack of care they received in certain government residential institutions, he shares the message he believes should be heard and understood by the people of Canada, the politicians and the healthcare system.
Keeping memories, restoring memories
Arthur Kupperman has been an entrepreneur for more than 30 years, after deciding to leave the field of public accounting. His website, My Senior Portal, and his family experience led his interest in keeping and restoring his own family’s memories. He explains what memories mean for him and his family. He says why keeping memories matters in families, and describes how family memories become part of the family’s heritage. He explains the value of keeping family memories for seniors whose memories may be starting to fail. He explores the universal appeal of storing memories and warns about the one thing he sees as the downside. He discusses technology used to store memories, and highlights the things that seem most practical for families. He encourages families to prize and store their family memories, stresses the need for organization within the family, identifies the cost, and explains what his service, My Senior Portal, can do to help families wanting to cherish their memories.
Hope for Family Caregivers Caring for Family Members with Schizophrenia
Dr. Chris Summerville, a non-government director of the Mental Health Commission of Canada, is also CEO of the Schizophrenia Society of Canada. He explains his work in schizophrenia and describes his personal experience of family caregiving. He compares the policies on family caregiving of the Mental Health Commission of Canada and the Health Council of Canada. He says how family caregiving’s role and value in schizophrenia is seen by the mental health care system. He examines the challenges for family caregivers arising with high-risk behaviors of family members with schizophrenia. He discusses attitudes to family caregiving from a historical perspective. He identifies needs for help for family caregivers involved with the social, justice and mental health systems. He distills messages relative to care for schizophrenia which he sees in the class actions now certified against the Province of Ontario. He gives his messages to healthcare systems, governments and family caregivers.
Electronic Health Records and Aboriginal Peoples
Dr. Janet Smylie is a family physician, public health researcher and research scientist who leads an Aboriginal Research program at the Centre for Research on Inner City Health, at St. Michael’s hospital, Toronto. Mabel Horton, RN, holds a Masters in Public Administration. She has key roles in electronic health record and related projects of the Assembly of Manitoba Chiefs. They discuss electronic health records for Aboriginal peoples from physician and nursing perspectives. They analyze the impact of record systems on privacy and autonomy on Aboriginal peoples and their communities, summarize the challenges, and explain the steps taken by the communities to provide for protections and support. They say what developments are still needed to ensure that the communities fully benefit from the record systems. They state their messages for physicians caring for Aboriginal people living on and off reserve and stress the need to listen to Aboriginal people to understand their needs.
Family Doctors Working with Family Caregivers
Dr. Susan Thouin is a physician practicing in the greater Toronto area. She’s an owner of MD Care Connect. Karen Pivnick owns Topcat Relocation Transition Solutions. They talk about their work and experience with family caregiving. They discuss the problems created for care in the community, that is care outside of hospitals, by the pressures on the healthcare system. They explain the effects of these problems for family doctors and family caregivers, and identify those they think are the most serious. They explain the types of help the family caregivers need from family doctors and the types of solutions that family doctors can bring to family caregivers, given all the pressures. They identify the most important solutions for family caregivers’ challenges that they think family doctors can provide. They say what more they would like to see done to promote family doctor services for family caregivers, and they give their messages for family doctors and for family caregivers.
Gentle Persuasive Approaches Program for Professional Caregivers--Family Caregiver Perspectives
Dr. Lori Schindel Martin is Associate Professor, Associate Director, School of Nursing, Ryerson University, Toronto, Canada, and Chair, Gentle Persuasive Approaches Advisory Committee. Amy MacFarlane is Founder and CEO of Recreational Respite Inc., which provides for creative living and innovative care. They talk about their programs and the needs these meet. They explain gentleness in caring, and what has been learned from its application in the training of healthcare professionals and family caregivers. They discuss modern attitudes to mental illnesses in light of past approaches to mental illnesses that led to treatment that was unsympathetic or even cruel. They explain how their programs are changing attitudes towards family caregivers caring for family members with mental illnesses and towards mental illnesses. They say what they would like to see done to promote gentleness in caring for persons with mental health conditions, and they give their messages for family caregivers.
Autonomy for persons with psychosis-related illnesses and their family caregivers
Elyn R. Saks is Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine among other appointments. Dr Lisa Doupe is an MD and a Fellow of the American College of Occupational and Environmental Medicine. She is a General Practice Psychotherapist specialized in care of persons whose high-risk behaviors involve them with the justice system. They discuss autonomy for persons with psychosis-related and other mental illnesses, how questions of autonomy arise, the importance of autonomy, the idea of autonomy shared with family caregivers, and key safeguards, such as the person’s freedom to change their minds about sharing autonomy. They discuss electronic health records’ impact on persons’ autonomy. They say what more they would they like to see done to promote autonomy and shared autonomy with appropriate safeguards.
Seniors in need, caregivers in distress
John G. Abbott is the Health Council of Canada’s Chief Executive Officer. He describes the Council’s work. He highlights the Council’s report, ‘Seniors in need, caregivers in distress’. He discusses the roles of caregivers, family caregivers, informal caregivers, and personal service workers. He compares the current state of family caregiving in Canada with that elsewhere. He instances the benefits that family caregivers bring to seniors and to the healthcare system faced with an aging population. He analyzes the challenges that family caregivers face in caring for their aging family members, especially those who are living with Alzheimer’s disease and the like. He identifies the needs of family caregivers caring for seniors and explores how well healthcare and social systems are helping family caregivers with these needs. He gives examples of success stories, summarize the report’s recommendations for its messages for the healthcare system, for governments and for family caregivers.
Snoopers and privacy for family members
Dr. Andrea Slane is an Associate Professor in the Legal Studies Program at the University of Ontario Institute of Technology in Oshawa, Ontario. Dr. Bill Bonner is Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan, where he teaches on the subject of management information systems. They explain what snooping is, who snoopers are and the types of risks they create for people whose personal information is carried in information-technology systems. They discuss the ways snoopers use information technology for snooping and how the law responds to the snooping. They identify the harms caused by snooping and how the law applies to these. They discuss the challenges in improving protection technically and through the law. They say what more they would like to see done to promote privacy protection for members of families whose health conditions make them especially vulnerable to harm from snooping. They have messages for family caregivers.
Home automation--things family caregivers should think about
Terry d’Silva is an entrepreneur, electronic engineer, inventor and businessman. Mon Ami, his latest invention, has the potential to improve the quality of life for seniors and for people with handicaps and their family caregivers, and to support Active Aging. Alan Majer founded GoodRobot.com. His current venture uses technology to help the elderly live independently in their homes by sharing information with family and caregivers. They explain why they got involved with home automation. They discuss the family caregiver guideline they are both working on, which explains things family caregivers should think about when they are considering home automation. They highlight home automation’s benefits and risks. To minimize the risks, they explain what family caregivers themselves can do, what suppliers and vendors of home automation systems can and should do, and how healthcare professionals can help. They give their messages to family caregivers thinking about home automation.
Powerhouse Project--Young Carers Initiative
Angela Arsenio is the Manager of the Powerhouse Project. Brianna Kane is 18 years old and Big Sister to a 12 year old girl with floating harbor syndrome, a rare genetic disease. They each talk about their experience as young caregivers in their own families and how they became involved in caregiving outside their families. Angela describes the Powerhouse Project and Brianna says how she became involved. They discuss the things that young caregivers do, the challenges they face, and the health challenges of the persons they are caring for. The describe how the Powerhouse project and the young caregivers work with the families of the persons they are caring for. They talk about the successes and the satisfactions experienced by young caregivers, and the way their school work can benefit from their caregiving work. They each say what more they would like to see done to promote the work of young caregivers and to get them more recognition. They each have messages for young caregivers.
Using social media to connect young persons with autism
Sara Winter has a twelve year-old nephew on the autism spectrum. She’s been his aide at school for a decade. She’s the mom of two boys, one with ADHD, anxiety and celiac disease. In Toronto, she created squag.com, a website to encourage kids of 8+ with autism. Her parent-child communication system SquagpadTM is now being tested. Kristina Chew is an Associate Professor of Classics at Saint Peter's College in Jersey City, New Jersey. She blogs daily about life raising her teenage autistic son, Charlie, at We Go With Him (http://autism.typepad.com) and about education, disability issues and human rights. They talk about their experience as caregivers for children with autism. They explain what communications actually means for children with autism, and how it includes special signals and, at times, silence. They discuss what they’ve learned from their children about communications and how information technology is used to help children, including their own, achieve their potentials.
Walking through doorways--how forgetting works normally
Dr Gabriel Radvansky is an author of “Walking through doorways - how forgetting works normally”, a title which he explains. He’s Professor in the Department of Psychology, University of Notre Dame, IN. He describes the questions his research would answer and the answers he got. He explains his conclusions about the ways forgetting normally works. He says why the brain normally forgets things and explains why this forgetting is not only normal, but also useful. He says young and older adults forget in the same way and that older adults’ memory function may be as good as that of young adults. He explains how his research findings help family caregivers understand when forgetting is starting to be not so normal. He says why family caregivers concerned about forgetting problems in family members and in themselves would be helped by knowing more about the ways forgetting normally works. He urges family caregivers to keep themselves informed about the ways memory works normally.
A Merck Manual for Family Caregivers
Dr. Robert S. Porter, editor-in-chief of The Merck Manuals, and Christene Gordon, Director of Client Services and Programs, Canada’s Alzheimer Society, discuss family caregivers’ information needs about Alzheimer’s disease. They describe the One-Page Merck Manual of Health and highlight the questions that family caregivers ask the Alzheimer’s Society. They say what information is needed by family caregivers about the first signs and worrisome trends of the disease. They explain the information needed by family caregivers about various aspects of Alzheimer’s disease including substance use and medications, diet and nutrition, injuries, infection, health generally, including personal and oral hygiene, and exercise and sleep. They stress the importance of information about self-care for family caregivers, whose job they see as hard, stressful and continuing. They share their key messages to family caregivers concerned about getting information to help them care for their family members.
Judith Snow, MA, is a social innovator and an advocate for inclusion communities that welcome participation by a wide diversity of people. She describes her career and life’s work as an artist. She explains what inclusion is, what brought her to believe in it, and how she uses art to advance it. She says what inclusion values, and who it creates value for. She describes the opportunities it brings, and explains their value. She identifies challenges that inclusion confronts, says why family caregivers should be interested in it, and explains what it means for children with special needs. She talks about communications for strengthening inclusion. She describes the play that’s been written about her. She says what needs to be done to improve understanding of inclusion. She tell us what more she wants to see done to promote inclusion for children and adults and their family caregivers. She gives us her message for family caregivers. Her work is shown at www.judithsnow.org.
Baby Boomers Confront the Caregiving Challenge
Bart Mindszenthy hosts www.mycarejourney.com, a community for family members caring for aging parents and other loved ones. He says how his family caregiving experience, background, and life’s work activated him in supporting family caregiving. He talks about Baby Boomers as family caregivers, identifies the health conditions for which they most commonly provide care, and the types of care that the family members need. He explains the types of help Baby Boomers need when they are family caregivers, where the help comes from, and what types of help they find difficult to get. He discusses the effects of age on Baby Boomers’ own health, and the challenges these effects generate for them and their family members. He explains why planning is so important. He discusses the future for Baby Boomers as family caregivers given that family caregiving is getting more and more important as the population ages. He states his message for Baby Boomers who are starting out as family caregivers.
What family caregivers should know about options for pain relief
Bill Archer develops pulsed electromagnetic wave field therapy as an alternative for pain management. He says what he learned about family caregivers’ needs from his own family caregiving experience, and what got him interested in the problem of pain. He describes the types of pain and the problems these cause. He explains the problems associated with pain relief. He describes the pain relief offered by the electromagnetic therapy, how it works, and the evidence that it works. He identifies the types of pain for which he does and does not recommend it. He talks about the things family caregivers should think about in helping family members who experience persistent pain, what they should think about if they are worried about the use of medications by family members in persistent pain, and when and why they should consider the electromagnetic therapy as an alternative to medications. He gives his message for family caregivers who are caring for a family member in persistent pain.
Family caregivers, oral hygiene and dental healthcare systems
Dr Carlos Quiñonez, dentist and researcher, is Director of the Specialty Training Program in Dental Public Health, Faculty of Dentistry, University of Toronto. Julie DiNardo, dental hygienist, has an independent dental hygiene office. They say why oral hygiene so important for people who are living at home with health challenges for which there is no medical cure, and describe the things that family caregivers do to promote oral hygiene for family members who cannot fully care for themselves, and why it matters that family caregivers can effectively promote their oral hygiene. They describe the guidance they offer to family caregivers caring for adults with depression and diabetes; and for children with Down syndrome and fetal alcohol syndrome. They say what they would like to see done to enhance support for family caregivers promoting oral hygiene for loved ones living at home. They have messages for family caregivers who are concerned about the oral hygiene of their family members.
Art as a language for caring
Martha Eleen is an artist whose work has been exhibited in the US, Canada, Mexico and Japan. She’s created an art show about Gabe, her son with special needs. She describes the show and explains what he says about it. She describes her most difficult challenges in caring for him. She describes his most difficult challenges. She highlights the way in which the language used by people who don’t know either of them amounts to a form of systemic bias. She describes the importance of sound in his life and his happiness in his caring environment of an extended family of caregivers. She explains the stresses of family caregiving and how she is able to maintain her life as an artist. She says what more she would like to do and see done in communities to promote art as a language of communication for families with members with special needs. And what she wants to see happen so that persons with special needs are treated as individuals with interests, ambitions and abilities.
Understanding our FASD Kids
Jeff Noble, who has ADHD, is advocate, trainer and coach for caregivers involved with Fetal Alcohol Spectrum Disorder (FASD). He has ADHD. He says how he became a foster parent of a young man with FASD, and how this changed his life. He explains his slogan ‘FASD is forever, frustration is not’. He describes the things he’s learned about FASD kids, foster-parenting for them, and the needs of families caring for them. He talks about the challenges that FASD creates for foster parents, and discusses the types of help with these challenges that foster parents need. He gives advice to foster parents about their own lives. He explains the types of communication that foster parents need with other foster parents. He talks about questions that he and others want to be answered as a result of various class-actions lawsuits, the need for more open discussion about FASD, and gives his message to family caregivers, foster parents or otherwise, caring for a family member with FASD.
Caring in Privacy
Alex Cameron, lawyer with the law firm Fasken Martineau in Toronto, practises in privacy law. Dr. Bill Bonner, Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan, conducts privacy research. They explain their interest, work, research and studies in privacy. They discuss what privacy and respect for privacy means with so much information travelling the world electronically. They highlight the risks arising from unprotected privacy, say how privacy is protected, and discuss responsibilities for providing protection. They talk about consent and implied consent to disclosure of private information. They discuss the role of family caregivers in protecting the privacy of family members who aren’t able to make consent decisions for themselves. They each highlight the things they would like to see done to strengthen respect for privacy in the electronic world and say who should do these things. Each shares a message to family caregivers.
What my Grandma means to say
JC Sulzenko, ”JC”, is the author of a one-act play about dementia for children, "What my grandma means to say". Kristen Irvine is a Personal Support Worker currently supporting her grandmother who has Alzheimer’s disease. JC explains how she came to write the play. Kristen describes the things she’s learned about Alzheimer’s disease by helping her Grandma. JC reads the play, and tells us about the young people it’s written for. She talks about audience reactions. Kristen describes her reaction JC shares her plans for taking the play to more audiences, and Kristen provides suggestions for reaching more young people and families. They discuss the value of the play to families, adults and healthcare professionals. They say what the two most important things are that need to be done to encourage more young people to help family members with Alzheimer’s disease, and say who should do these things. They give their messages to young people with a grandparent with Alzheimer’s disease.
Helping family caregivers when there’s mental Illness in the family
Ella Amir is Executive Director of AMI-Québec. Jean Claude Benitah is Vice-President, Board member, Chairman of the Political Action Committee, and Member of the Strategic Planning Committee of AMI-Québec. They talk about their involvement with family caregivers and family caregiving in families with a member with mental illness. They explain AMI-Québec’s history, mission and services. They describe the help that family caregivers seek, and the challenges that mental illnesses create for family caregivers, and the need for family caregiver support after a family member is discharged from hospital. They describe the challenges that arise in their work and give examples of successes and hope brought by the services provided by AMI-Québec. They say what more they would like to see done to bring more help to family caregivers caring for family members with mental illnesses. They each share their messages to family caregivers caring for a family member with mental illness.
Before and After Seniors’ Falls: What Family Caregivers Should Know
Bob Pearson is President of Kimmel of Canada. Neila Curtin is responsible for oversight of the operation of the retirement home portfolio of Greenwood Retirement Communities. They say how and why they got involved with problems of seniors’ slips and falls, and how these influence their work. They discuss ways to prevent fail seniors’ slips and falls, explain where the risks are greatest at home and in facilities, and say what family caregivers should think and ask about. They discuss what happens after a senior’s serious fall, what emergency planning involves, and what family caregivers should know. They discuss the things that family caregivers should consider when a senior who’s had serious fall is discharged from hospital. They describe the things they would like to see done to improve slip and fall prevention and to improve the support for people and their families when a family member is recovering from a serious fall. They share their personal messages with family caregivers.
Viewing the home with information technology
Alan Majer is the founder of GoodRobot.com. This uses technology to help elderly people live independently in their homes by sharing information with family caregivers. He explains how the technology works in the home. He discusses the types of challenges faced by family caregivers and the family members they care for and says how GoodRobot helps overcome these. He explains the challenges created for family caregivers and family members by technologies like GoodRobot and says what the solutions are. He says what more he would like to see done to bring more helpful technology to family caregivers and the family members they are caring for. He says what more needs to be done to help family caregivers and their family members understand how technology helps them and the challenges it may create for them, and whether there is a place for a family care guideline. He shares his strongest message to family caregivers considering technology as a way of helping them care for a family member.
Ontario’s developmentally challenged go to court--Who’s challenged now?
How well children and adults with various mental health and other conditions were cared for in the Ontario government’s Huronia Regional Centre, closed in 2009, will be examined in a class-action lawsuit which goes to trial on September 30, 2013 in Ontario. Jody Brown, an associate with the law firm Koskie Minsky LLP, and Bruce Ritchie, Moderator & CEO of FASlink Fetal Alcohol Disorders Society, and a single father of a son who was diagnosed with FAS as an infant, explain the lawsuit, the allegations, and the questions of responsibilities, and say what the Court will be asked to decide. They discuss the health conditions that are likely to have affected the children and adults. They discuss fetal alcohol spectrum disorder as one example. They analyze what is known about the standard of care in the facility, consider the roles of the medical and legal professions, and talk about the likely implications of the case for attitudes to mental illness and the care it needs in Canada.
Services for Supporting Seniors’ Family Caregivers Directly
Raymond Applebaum is the CEO of Peel Senior Link, a non-profit charitable organization that makes independent living possible for seniors. Amy MacFarlane is Founder and CEO of Recreational Respite Inc., a company which provides for creative living and innovative care. They tell us how they came to be interested in services for seniors and their family caregivers. They describe the services their organizations offer. They explain what’s meant by supporting family caregivers directly and the types of direct supports, including direct pay, most likely to be useful to family caregivers. They discuss the challenges in providing direct support to family caregivers, including the meeting costs. They say what more they would like to see done to bring more direct services to family caregivers caring for family members who are aging normally and for also those who are living with Alzheimer’s disease. They give their messages to family caregivers making decisions about help for seniors.
Home care technology for family caregivers
Laurie Orlov advises large organizations as well as non-profits and entrepreneurs about trends and opportunities in the age-related technology market. Gail Hunt is President & CEO of the National Alliance for Caregiving, a non-profit coalition dedicated to research and national programs for family caregivers and professionals who serve them. They say how they came to be interested in technology for home care, and explain the services for family caregivers offered through their work and organizations. They talk about the important survey they were both were involved with and what was discovered about family caregivers’ challenges and the way in which they are most likely to be helped by home care technology. They identify the main challenges that homecare technology is most helpful with. They discuss the challenges that homecare technology brings to family caregivers, and some of the concerns it raises. They summarize their messages to family caregivers considering homecare technology.
Special Needs Planning for Family Caregivers
Fred Ryall, of Bearing Capital Partners, specializes in estate planning for business owners, professionals, executives and more specifically families who have special needs children. Craig Ross is Associate, Wills, Estates and Trusts, with the law firm, Pallett Valo LLP, whose practice includes advising disabled beneficiaries and guardians for personal care. They tell us how their interest arose in special-needs planning for family caregivers. The say what is meant by special needs planning, and when family caregivers should consider getting legal advice. They talk about the planning challenges for family caregivers with families with special needs. They explain services and support for family caregivers in special-needs families. They address the special-needs family caregivers’ question, What will happen to my child after my death?. They discuss the planning that they would like to see done by the healthcare, social and other systems that special-needs families rely on.
Weighing the options for care
Christine Taylor is the founder and President of Nursing Home Ratings Inc. She explains what led to her interest in helping family caregivers to weigh the options for care for their loved ones. She explains the services she offers. She discusses the types of help family caregivers are looking for in weighing options for care in relation to the types of health conditions affecting their family members. She analyzes the types and options of care for care and relates these to the challenges faced by family caregivers. She talks about challenges of weighing care relative to options, quality and cost. She discussed how the weighing of care options should be influenced by family caregivers’ own challenges, such as their own physical, mental, and financial health. She tells us what more she would like to see done to give more help to family caregivers weighing options for care for family members. She speaks her strongest message for family caregivers weighing care for a family member.
Training the Brain
Nicky VanValkenburgh authored ‘Train Your Brain, Transform Your Life: Conquer Attention Deficit Hyperactivity Disorder in 60 Days, Without Ritalin.’ Dave Siever, through his own company, Mind Alive Inc., provides technology for brain training for depression, attention deficit disorder, cognitive decline, insomnia and seasonal affective disorder, and other conditions. They describe how they came to be involved with brain training. They discuss the challenges various mental health conditions create for children and adults, and their family caregivers. They explain how brain training helps with the challenges, and how it works. They talk about their real-life success stories, especially with children. They share their views on the progress that brain training is showing, say what more needs to be done to get the value of brain training better understood by healthcare professionals, and highlight ways to make it available to more persons and family caregivers who need it.
Drug Reform and Family Caregivers
Bill Smith is Managing Director of NSI’s Healthcare practice group. Marc Kealey is Chief Advocate, Kealey & Associates Inc. They say why American and Canadian family caregivers and their families should be interested in drug reform. They explain what’s meant by ‘generic’ and ‘brand-name’ drugs and discuss their differences in costs and medically. They explain how drug plans work in the US and Canada, identify any important gaps, and say what they think needs doing to close the gaps. They discuss planners and politicians’ concerns about ever-rising costs of drugs and drug plans. They say how the supply of generics can be increased and their costs lowered across North America. They highlight the drug reforms they both would like to see to protect drug plans so these continue to support people who rely on them and so they expand to meet future needs. And they say what messages they have for healthcare planners and cost-concerned politicians in Canada and the US.
Home Care for Family Members by Family Caregivers Working with Professional Caregivers
Sharon Carr, a Registered Nurse with 35 years of nursing experience, and Bill Lougheed, a retiree with a distinguished career, discuss home care for family members provided by family caregivers working with professional caregivers. Sharon says how she became involved with in-home care services for clients and their family caregivers, and what the services are that she provides. Bill talks about his family caregiver and the way she works with the professional services Sharon’s team provides, his needs for caregiving services in his home, and the services he receives. They explore the idea of teamwork in home care for family members when family caregivers are working with professional caregivers, and identify the important things that family caregivers need to know so the teamwork succeeds. They both share the teamwork messages they would like to give to family caregivers who are wondering about professional services to help their loved ones stay at home for as long as possible.
Living a Meaningful Family Caregiver Life
Dr Kenneth Herman is a Board Certified Clinical Psychologist and Fellow in the American Academy of Clinical Psychologists. He is also the author of the self-help book “Secrets from the Sofa: A Psychologist’s Guide to Achieving Personal Peace.” Dr Herman was the Director of The Psychological Service in Teaneck, New Jersey for many years. He has also taught on the university level, consulted in industry, conducted research, and lectured extensively in the field of Mental Health. He has appeared on numerous radio and television programs. He currently promotes his book, which has been the recipient of many literary awards in the categories of Psychology, Mental Health, Health, as a Guide to College Students, and as The Best Personal Growth Book of the Year. Reader’s comments and reviews may be seen on his web site at: www.secretsfromthesofa.com. He also presently serves on the Board of Trustees of a free primary medical care facility in Hackensack, New Jersey for the uninsured.
Family Doctors Safeguarding Vulnerable Adults
Dr Tony Calland is the Chairman of the British Medical Association's Medical Ethics Committee. He discusses his background as a physician, his interest in medical ethics and the work of his Committee. He explains who vulnerable adults typically are, what makes them vulnerable, and the things that they are vulnerable to. He talks about safeguarding vulnerable adults, what’s really meant by safeguarding, and what the basics of safeguarding for vulnerable adults really are. He explains what’s meant by abuse and neglect and how safeguarding works in such situations. He describes family physicians’ roles in safeguarding vulnerable adults: how they get involved, what the problems are that they get involved with and how they help especially when vulnerable adults get into trouble with the law. He discusses situations in which vulnerable adults or the police may be in danger. He shares his message to family caregivers caring for a vulnerable adult about the role of the family physician.
Men as Family Caregivers
Dr. James V. Gambone co-authored ‘Who Says Men Don’t Care?, A Man’s Guide To Balanced and Guilt Free Caregiving’. Bob Smith, a retired firefighter, is the full-time family caregiver for his wife Joan, diagnosed with Alzheimer’s disease in 2004. Jim explains his interest in family caregiving. Bob describes what the felt when he first realized that he was to be the family caregiver for Joan. They talk about men as family caregivers and the ways they approach and get help with family caregiving. Jim summarizes what is known about men as family caregivers. Bob explains how his approach to family caregiving changed in the time he’s been caring for Joan, and the help he gets. Jim talks about the way men differ from women in their approach to family caregiving. They discuss Jim’s self-assessment system, which Bob has applied to himself. Jim explains how grief and depression differ. They offer the message they each want to share with family caregivers facing the challenges that Bob faces.
Audrey Miller is the founder and Managing Director of Elder Caring Inc. Dr. Renee Ruiter-Kohn provides various services including individual case management, interpersonal counselling and vocational counselling. Both have personal experience of family caregiving. They describe their work and the services they provide for families where feuding is a problem. They explain the ways in which feuding develops in families, and how it affects members of families such as immediate family caregivers and their siblings, children of parents in their declining years, and parents of children with severe and incurable medical conditions. They discuss the challenges that cause family feuding and, using their own personal experience and the insights they’ve gained from their professional work, talk about steps to prevent feuding from occurring and what to do when it does occur. They share their ‘wish list’ of things that they advocate for families to reduce the risks of family feuding.
Young adults, Mental Health and the Justice System
Gerard Allard, who entered politics as a Manitoba Liberal, is a City of Winnipeg police officer with 24 years of service. Bruce Ritchie is Moderator & CEO of FASlink Fetal Alcohol Disorders Society, and single father of a son who was diagnosed with fetal alcohol syndrome as an infant. They describe young adults who get into trouble with the justice system. They discuss the challenges mental health conditions bring to young adults. They explain the problems with mental functioning that cause the young adults to get into trouble. They share views about the ways in which the police and the justice system deal with young adults with mental health challenges. They say how serious the social consequences are, and discuss the ways in which the existing systems affect the social consequences. They talk about the help that’s needed by the young adults and the police. They say what they believe needs to be done to address the consequences, reduce the harm, and to bring about prevention.
Memory and Memories
Professor Steve Joordens is a psychologist who specializes in research in memory and consciousness. He explains what ‘cognitive’ and ‘cognition’ mean, and how these relate to memory and memories. He describes how he researches memory and some of the advances he has made, along with his PhD student, Dwayne Paré. He explains how memory works, how the brain stores memories and how it retrieves them. He talks about what happens when we forget something, and how we can use knowledge of how memory works to help us make the best of it. He talks about how aging affects the way the brain stores and recalls memories. He explains how we can improve our brain’s memory capabilities as we go through the normal phases of life. He shares with us the things that family caregivers should understand about the effects of normal aging on memory and memories of seniors, and states the message he would like to pass to family caregivers concerned about a loved one’s memory and memories.
Stealing from Mom and Dad
Léony deGraaf chairs the Burlington Seniors & Law-Enforcement Together Council which educates seniors on crime-prevention. Mark Wandersee is a family caregiver, trained educator, public speaker, and healing coach closely involved with caregiver issues and advocacy. They say what ‘ Stealing from Mom and Dad ’ really means and explain the stress it causes for and within families. They explain the seriousness of the problem in North America. They identify signals that alert financial professionals to the possibility that stealing from mom and dad may be occurring within or outside the family. They discuss the ways financial services and financial professionals attempt to combat the problem. They identify the greatest challenges in protecting seniors. They talk about the limitations of the financial, legal and medical systems in combating the problem and how well understood the problem is. They share the messages that they would like to pass to these systems and to family caregivers.
Oral Health and Lou Gehrig’s Disease ALS
Felicia Valo is a member of the Board of Directors of the ALS Society of Canada, and she chairs its Advocacy Committee. Her late husband, Sidney Valo, battled ALS for 3 1/2 years before succumbing to the disease in December 2008. Denise Burdon is a Public Health Dental Hygienist and a member of York Region ALS Outreach Program. She holds the Diploma in Dental Hygiene from Algonquin College and a Degree in Dental Hygiene, University of British Columbia. They discuss the family caregiver experience of ALS, and the work of the dental hygienist providing oral healthcare to people with ALS. They explain the services needed by people with ALS and their family caregivers. They say how dental hygiene services should be organized so that they progressively meet the needs of people at the various stages of ALS. They pass a message to family caregivers, healthcare professionals and the healthcare system about the importance of helping family caregivers caring for a family member with ALS.
Community health centres, diverse communities and family caregiving
Jack McCarthy is the Executive Director of the Somerset West Community Health Centre since 1989. The Centre provides comprehensive primary health care services targeted to the needs of residents in west central down town Ottawa. Dr Ahmed El-Zoeiby, who holds a PhD in microbiology, is a community pharmacist practicing in Ontario. They discuss their work and the types of communities they serve. They explain health promotion, illness prevention, and community wellbeing in relation to needs and family caregiving in the communities they serve. They discuss caregiver needs in faith-based, culture-based and immigrant communities. They describe family caregivers’ needs and ways to address these needs where a family member is living with a health condition for which there is no cure. They explain to family caregivers how community health centres and community pharmacists are helping meet the needs of family caregivers in the diverse communities, and say what more help they believe is needed.
Shifting Caregiving from Crisis to Comfort for Alzheimer’s Disease
Lori La Bey specializes in the psychosocial aspects of Alzheimer’s disease. She explains her work and her experience as a family caregiver for her mother with Alzheimer’s disease. She tells us what people are looking for when they connect with her Blog ‘AlzheimersSpeaks.com’. She describes the challenges Alzheimer’s disease creates for family caregivers. She talks about the experiences of family caregivers she connects with who are coping with these challenges. She explains what she means by ‘crisis’ and ‘comfort’ when she speaks of ‘shifting caregiving from crisis to comfort’. She tells us what she says to family caregivers who fell selfish in seeking comfort for themselves. She says how well she thinks healthcare professionals understand the idea of shifting from crisis to comfort, and what this really means for family caregivers. She describes the movement of family caregivers and persons with Alzheimer’s disease that’s growing around the idea of shifting from crisis to comfort.
Conquering attention deficit hyperactivity disorder without Ritalin
Nicky VanValkenburgh is the author of ‘Train Your Brain, Transform Your Life: Conquer Attention Deficit Hyperactivity Disorder in 60 Days, Without Ritalin.’ She talks about the book, and the story it tells of her own personal experience with medications, brain training and ADHD. She describes the way ADHD affects children and adults, and the challenges that it creates for family caregivers. She explains the way brain training programs help with ADHD. She says why brain stimulation is so important in treating ADHD, and compares Ritalin, and other medications, with brain training programs in providing stimulation. She describes the limitations of medications, and says why brain training is the better method. While non-specialist healthcare professionals may not yet be fully informed about brain training programs, she says, recognition of the programs’ value is growing as these become more widely available. She shares real-life stories of success in overcoming ADHD, including her own.
Prostate Cancer and North America’s Caribbean communities
Dr. Winston Isaac is a co-founder of The Walnut Foundation, a Men’s Health Interest and Support group dedicated to development and education of Black men and the Black community in taking responsibility for their health. He talks about his work in healthcare. He discusses his own experience with prostate cancer. He describes the Walnut Foundation and what it does. He talks about prostate cancer risk for black men generally, the Caribbean community, and all men. He explains what he sees as the biggest challenges that need to be overcome in battling prostate cancer. He explores the influence of social things, like stigmatization attached to a positive diagnosis, and how can these things be combated. He analyzes how well healthcare professionals understand the challenges faced by men with a prostate-cancer diagnosis. He says what more needs to be done in fighting prostate cancer and what changes he would advocate in a call-to-action speech to an audience of men and their partners.
Help through caregiver-support programs for Alzheimer’s disease
Dr. Linda Teri is a Member of the Medical & Scientific Advisory Council of the Alzheimer’s Association. She’s Professor of Psychosocial & Community Health at the University of Washington. Amy MacFarlane is Founder and CEO of Recreational Respite Inc, www.recrespite.com, a company which provides for Creative living and innovative care. They talk about Alzheimer’s disease. They discuss real-life examples of caregiver-support programs that helped family caregivers meet the challenges of Alzheimer’s disease. They discuss the ways in which the programs support aging at home. They say how well community-based professionals, such as nurses and physicians, and the wider public understand the family caregiving challenges of Alzheimer’s disease and the role of caregiver-support programs. They describe what is being done to increase understanding and to promote the programs in the US and Canada. And then they tell us how optimistic they feel about progress in coping with Alzheimer’s disease.
Help with diabetes for diabetics and their families
Marc Kealey is a lead voice in North America on health reform, integrated health and drug benefit plan enhancement, and healthcare policy. John Wunderlich is an independent information and privacy consultant in Toronto who describes himself as a middle-aged guy with Type II diabetes who’s active in a political party. They discuss diabetes-related challenges. They say how well these challenges are being met by the healthcare system, healthcare professionals and persons with diabetes and their families. For improving the way the challenges are being met, they explore the responsibilities they see for the healthcare system, for healthcare professionals and for persons with diabetes and for their families. Then they say what they would see done to improve responses to the challenges of diabetes, and what would change if their prescriptions for change were implemented.
Speaking with technology when your voice doesn’t work
Gail Fisher-Taylor, and her two sons, Kerr and Skye Wattie, are founders of Kilometres for Communication, http://kilometresforcommunication.com, a national awareness and fundraising campaign for empowering the voices of people who, because of disabilities, must communicate without typical speech. Tracy Shepherd is President of the Canadian Chapter of the International Society of Augmentative and Alternative Communication, http://www.isaac-online.org/en/home.shtml, which promotes awareness of the potential of augmentative and alternative communication (AAC) to enhance lives of individuals unable to speak. They discuss the enormous social and physical challenges experienced by people with serious voice problems. They share with us how people with voices can establish communication with persons without voices. They say how AAC helps meet the challenges of people without voices. They tell us how their two organizations are helping make AAC more widely accessible. They seek new members.
A young man’s journey from adolescence to adulthood via quadriplegia
In, ‘Now What?’, SokheChapke Publishing, Dr. JR Harding and his wife and co-author, Erika Richards-Harding describe JR’s journey from adolescence to adulthood via quadriplegia. Living with a significant disability, they say, citing the Americans with Disabilities Act, "is natural" because of who Americans are and because each one understands intuitively the right and responsibility to pursue "life, liberty and the pursuit of happiness.” So there exists no barrier which cannot be overcome. JR tells us how his barrier-bursting journey took him from trauma to triumph. How he was sustained by the family’s love, sacrifices, courage for "tough love" and vision for his future. How he was supported by the team effort of all the friends, personal care assistants, administrative assistants, coaches, administrators and strangers. Without them, JR says, he wouldn’t be able to share his story, adding intriguingly that he’s changed some names to protect the “innocent and the not so innocent”.
Al-Anon Family Group help for family caregivers with a family member with alcohol problems
When a family member has a drinking problem, family caregivers may be unsure where to find help. That’s when Al-Anon comes into the picture. Thomas Anon describes his own involvement with Al-Anon, the history and principles of Al-Anon, and about the Al Anon Family Group. He explains what ‘problem drinker’, ‘alcoholic’ and ‘alcoholism’ mean. He describes the types of people who become problem drinkers. He explains the role and challenges Al-Anon sees for family caregivers when a family member is a problem drinker. He discusses the unique type of help that the Al Anon Family Group provides to family caregivers, and what family caregivers can expect from their first Al Anon Family Group meeting. He tells us how well he thinks healthcare professionals and the public generally understand the problems family caregivers experience with problem drinking in the family, and the help they need. He says what more he’d like to see done to promote public understanding of Al-Anon’s work.
The unpaid, unrecognized family caregiver
Carol Stanley is family caregiver for her 92-year-old father. Based on her own experience, she talks about the challenges for family caregivers in Canada. She discusses the help that she finds helpful. She identifies the help that she needs most but doesn’t receive enough of or even any at all. She analyzes the problems that family caregivers experience in getting help they really need. She explains the challenges for family caregivers generally who are expected by the healthcare system to bear more and more of the burden of aging of the population. She explores the reasons for the challenges, which is that people are living longer and longer so more and more of us are likely to develop the types of diseases for which there is no cure, and that the problems of aging are not recognized unless a disability is diagnosed. To cope with this challenge, she tells us what more she thinks needs to be done to support family caregivers with the help they really need.
How can problems of knowing and remembering be helped in Alzheimer’s disease?
Nicole Scheidl is founder of Fit Minds Cognitive Health Products. Laura Bramly is the author of the book, Life Scenes. They explain how they came to be involved in work with Alzheimer’s disease. They discuss therapies for helping with problems of knowing and remembering for persons with the disease. They explain the particular ways in which therapies can help family caregivers and their family members with the serious problems of knowing and remembering that occur with the disease. They highlight the role of family caregivers. They explain how the therapies help family caregivers as well as the persons with the disease they are caring for. Acknowledging that people are living longer and longer so more and more people are likely to develop the disease, and that healthcare planners are planning for more and more for caring at home, they say what more needs to be done to provide more of the benefits for family caregivers of the therapies they’ve described.
Faith-Based Healing, Medicine and Miracles
Jaentra Gardener was diagnosed in 1977 with multiple sclerosis. She explored every method that might help her overcome this debilitating illness. She not only received but she also studied numerous therapies and techniques. She healed herself. Denise DeJarlais is a healing coach, mystic, creative thinker, and open-hearted, involved person. She and her husband, Robert Peterson, faced his life and death struggle after he was diagnosed with glioblastoma, an aggressive brain cancer. They say why they took up healing. They explain what healing is, and who healers are. They say what healing does and does not promise, and who can benefit from it. They describe the feelings that family members experience when a loved one receives healing. They describe how they work with doctors and nurses. They explain the ways in which they work with family caregivers, especially in the earliest stages of healing, and say how family caregivers can find out more about healing.
Tyze Networks for Family Caregivers
Vickie Cammack is President and CEO of Tyze Personal Networks. She explains her reasons for setting up Tyze Networks. She highlights the ways the Networks support family caregivers and the family members they’re caring for, and gives examples of the ways family caregivers have been helped. She discusses the reasons why family caregivers need to communicate among themselves. She points up the circumstances in which family caregivers’ communicating is important. She talks about the health conditions that make family caregivers’ communicating especially important. She explains how family caregiver communications help generally with the health and social support of family members. She answers the question of whether family caregivers are communicating among themselves because they don’t get enough information and similar support from the healthcare and social support systems. She says what more she would like to see done to promote communications among family caregivers.
Pharmacists, Family Caregivers and Medications
Bill Brown is a pharmacist, seasoned business executive and entrepreneur. Dr Ahmed El-Zoeiby is a pharmacist with degrees in microbiology and immunology. They describe their work as practicing pharmacists, and discuss the ways in which they help family caregivers, their family members and patients generally. They talk about the challenges for family caregivers when their family members depend on medications. They discuss the particular challenges of medications that cause addictions and that are associated with side effects. They explain the ways in which pharmacies and pharmacies handle the privacy of the personal health information of patients, family caregivers and family members. They say what they would like to see done to done to enable pharmacists to bring more help and greater safeguards for family caregivers and their family members. They say how the help of professional pharmacists can be better explained to family caregivers and their family members, among others.
Elder Abuse--Physical, Psychological and Financial
Constable Patricia Fleischmann of the Toronto Police Service has administrative responsibilities for Vulnerable Persons Issues, including abuse and neglect of older adults, persons with disabilities and mental health conditions. She describes the types of elder abuse she encounters, and says how common these types are. She talks about causes of elder abuse, and health conditions that make seniors especially vulnerable to abuse. She explains what family caregivers and families need to know when elder abuse has occurred. She highlights what is known about in-family elder abuse, and how this typically occurs. She discusses the signs that elder abuse is occurring. She discusses the circumstances in which police charge elder abusers, and explains when and how she recommends family caregivers and families to get in touch with the police. She says what more can be done by police services such as hers to prevent elder abuse, and what more she thinks can be done by family caregivers.
Finding My Voice--Stories from Life with Cerebral Palsy
Don Smith and Jane Field have worked together to record Don's life story since meeting in a community literacy program 22 years ago. At the end of 2010 they published ‘Finding My Voice: Stories From My Life’. They tell us how they came to know each other and to work together on the book. They talk about Don’s life with cerebral palsy, about the people who were his family caregivers and about the challenges his family encountered making ends meet. Don talks about his first wheel chair and the way it affected his life. They both discuss Don’s communications challenges. Jane highlights his communications difficulties. Don explains what happened to his communications after his mother died, and the frustrations he subsequently experienced. Jane explains the help Don got with his communications and how he got the help. Don says what makes the sun shine for him. The book can be purchased for $20 plus $5 shipping and handling from Jane at: firstname.lastname@example.org
Recreation Therapy and Family Caregivers
Amy MacFarlane is Founder and CEO of Recreational Respite Inc, www.recrespite.com, which provides creative living and innovative care services. She explains recreation therapy and talks about the challenges that it helps with. She describes the special needs and health conditions for which she recommends recreation therapy. She explains why and how recreation therapy helps persons and their family caregivers meet the challenges that these conditions create. She describes some real-life examples. She talks about organizing recreation therapy for persons living at home alone, with their families, or in a care facility. For these various situations, she explains how recreation therapy helps family caregivers. She explains how recreation therapy helps aging at home, a policy favoured by governments. She says what she would like to see done to extend, expand and increase funding for recreation therapy. She explains what family caregivers can do to help promote recreation therapy.
What healthcare reform should mean for family caregivers
Marc Kealey, Chief Advocate, Kealey & Associates, is a lead voice in North America on health reform, enhancement of health and drug plans, and healthcare policy. He describes his own experience with family caregiving, and way this has influenced his views on healthcare reform. He explains the three toughest challenges for healthcare reform in North America. He talks about the challenges for family caregiving, the ways family caregivers help the healthcare system, and the help family caregivers get, and don’t get, from the healthcare system. He identifies the health conditions for which family caregivers particularly need more help, and about the help they need. He explores the help for family caregivers that healthcare reform currently visions, and tells us what he would like to see done through healthcare reform to get more help for family caregivers, and from where and how the help should be provided. He suggests ways in which family caregivers can influence healthcare reformers.
Passionate Amateurs as Inspired Innovators in Family Caregiving
Al Etmanski is co-founder and President of Planned Lifetime Advocacy Network, (www.plan.ca), which assists families in Canada and globally in addressing the financial and social well-being of relatives with a disability, particularly after their parents die. He talks about his career and his own family’s experience with family caregiving. He discusses the especially challenging challenges faced by family caregivers and the way passionate amateurs with innovative instincts help family caregivers and their family members face these challenges. He gives some real-life examples. He compares passionate amateurs’ innovations for family caregiving with those of the big players in healthcare: government healthcare systems, for-profit healthcare organizations, and charitable healthcare organizations. He says what he would like to see done by academic and research sectors, healthcare systems and healthcare professions to encourage passionate amateurs to do more to help family caregiving.
Seniors Supporting Seniors
Barbara Burnett is Executive Director, Community Management, with Seniors For Seniors. She describes her career, her work and her experience with family caregiving. She discusses the challenges for seniors, and explains what makes these so challenging. She describes how seniors’ support helps seniors and their family caregivers meet the challenges involved in living at home, living a long way away, or living in long-term care facilities. She talks about aging at home and tell us how well the needs of seniors are communicated to healthcare planners from programs like these, and what she sees as ways of improving these communications. She explains how well or otherwise the needs of seniors are generally understood and what she sees as ways of improving understanding of key needs, such as those in culture-based, faith-based and immigrant communities. She tells us what she would like to see done to enable more seniors to bring more help to seniors and family caregivers caring for them.
Family Caregiving in the Muslim Community
Sheikh Alaa the Director of Religious Affairs for the Islamic Centre of Canada-ISNA and Ahmed El-Zoeiby is a licensed pharmacist practicing in Canada. They talk about their work and their contacts with family caregivers in the Muslim community. They explain how Islamic values relate to family caregiving. sheikh Alaa highlights the challenges that he hears about from family caregivers, and describes the challenges that seem most difficult. Ahmed describes the challenges that family caregivers experience with medications for their family members and with healthcare generally. sheikh Alaa says how well the needs of family caregivers in the Muslim community are understood by the social services, and how communications can be improved. Ahmed says how well the needs of family caregivers in the Muslim community are understood by the healthcare system, and how communications can be improved. They both say how they would like to see help improved for family caregivers in immigrant communities.
Information Technology for Family Caregivers
Terry D’Silva is an electronic engineer, inventor and businessman and founder of Tertec Enterprises Inc, a successful international technology company. His latest invention, Mon Ami, could widely impact society by improving the quality of life for seniors, people with handicaps and their family caregivers, and to provide a platform for active aging. He describes his own family’s experience with health-related challenges and the role of family caregiving in his family life. He talks about the technology solutions, including Mon Ami, he developed to meet these needs. He explains how his family’s experience with family caregiving influenced the information technology in the products and services that Tertec offers. He talks about how well the needs of family caregivers are understood by the information technology industry and healthcare, and how to improve this understanding. He says what he would like to see done to bring more help to family caregivers through information technology.
Family Caregiving in Immigrant Communities
Samuel Getachew is an Ethiopian Canadian activist with a passion for Canadian and American politics and community activism. He tells us about his own experience with family caregiving in his extended family. He discusses the challenges faced by family caregivers in the immigrant communities he works with, and generally. He analyzes the challenges these family caregivers face with the healthcare system. He says how well he thinks healthcare professionals like doctors and nurses understand the challenges faced by the family caregivers. He discusses how well the healthcare system as a whole understands the family caregivers’ challenges, and how well governments understand them. He explains what his political platform would be if he were seeking election as a politician determined to help family caregivers, where he thinks the money would come from, and how his platform would help immigrant-community family caregivers get their voices heard.
The Patients’ Association and Family Caregivers
Sholom Glouberman founded the Patients' Association of Canada. He explains how his own experience as a patient convinced him of the need for an association. He shares his perspectives on family caregiving. He highlights the need for patients to become part of decision-making in healthcare. He answers the question of whether family caregivers should also be included in healthcare decision-making. He discusses the extent to which the role of family caregiving and the needs of family caregivers are understood and acknowledged by doctors, nurses, healthcare managers, medical sociologists, researchers, health care consultants, social workers and others represented in the Association. He explains the ways in which the Association will work with family caregivers and whether it can effectively represent their needs well as those of patients. He answers the question of whether family caregivers’ interests can be advanced through the Association or whether they need one of their own.
Vision Challenges Turned into Visible Success
Melanie Cooper is a visually impaired teacher. She’s founder and director of the Connect Learning Centre in Toronto, Canada. As a Guest on Family Caregivers Unite in the Episode of July 13, 2010, she explained what she planned for the Centre. Now she brings us up to date with her story of how she got from start-up to the stage at which the Centre delivers all the things it does now. She talks about the people who work with her, about the people who attend the classes, about their stories and experiences, and about the benefits they get from the Centre. She talks about the ways in which she works with family caregivers. She tells us about the challenges she had to overcome. She explains why she wants to encourage people to work with her in various ways and why she would like to help others across North America to do the same thing she’s done. She talks about the future; what she want to do next, how she is going to achieve these things, and the help she is looking for.
Safeguarding Vulnerable Persons in Healthcare Facilities: Challenges for Family Caregivers
Harry van Bommel, Executive Director, Legacies Inc, describes his own experience with family caregiving and his work with vulnerable people in healthcare. He discusses his work in advocating for more and better safeguards for vulnerable persons who are in the care of healthcare facilities. He explains the needs for safeguarding vulnerable persons in healthcare facilities, and gives examples. He highlights the challenges for family caregivers, and describes the approaches he suggests to family caregivers for safeguarding vulnerable family members in the care of healthcare. He explains the things that he would like to see done at government level to provide more and better support for family caregivers faced with vulnerabilities in their families. He shares the things that in his involvements with family caregiving for vulnerable people, in his own family, and in his other work that make the sun to shine for him.
Family Caregiving in the Jewish Community
Rochelle Wilner served as National President of B’nai B’rith Canada. Dr Rachel Goldberg is Director of Aging Policy for B’nai B’rith International. They describe the support for family caregiving through B'nai B’rith in Canada and the US. They discuss their experience with family caregiving in their extended families. They explore the challenges that predominate in the Jewish communities in the US and Canada, and identity their most important impacts. They discuss the challenges of distance and demographics for family caregivers, and the importance of community. They tell us about the things that cause the sun to shine for them in their involvements with family caregiving in their extended families and in their work with the Jewish community. They share with us the policies they would advocate if they were politicians standing for election on a platform of support for family caregivers, say what would be the most important messages they’d want to get across to voters.
Airborne Films: Airborne Hopes for Young Adults with Mental Health Conditions
Deanna Finch-Smith is Executive Director of the Salvation Army Lawson Ministries, which supports adults with developmental disabilities in residential, day, and employment opportunities. Bruce Ritchie is Moderator & CEO of the Fetal Alcohol Disorders Society, and a single father of a son who was diagnosed with FAS as an infant. They describe the work of their organizations. They explore the challenges that mental health conditions create for young adults. They discuss innovative social approaches to the care of young adults with mental health conditions, such as the for-profit business created by the Lawson Ministries, Airborne Films, in which young adults with mental health conditions are employed. They discuss the conclusions they draw about the future of care for young adults with the mental health challenges they talk about, and say what they would like to see done to provide more help for the family caregivers of the young adults.
Alzheimer’s Disease, Mountains, and Family Caregiving
Colorado-based Alan Arnette retired early to care for his mom who later died from Alzheimer’s disease. Sue Kelly is a registered nurse experienced in public health nursing. She’s Director of Health & Wellness with Canada’s We Care Health Services. They share experiences with family caregiving. Alan explains why the tragedy of his mom’s death transformed him into a champion for the fight against Alzheimer’s disease. Sue explains how her family’s experience with family caregiving inspires her work with family caregivers caring for Alzheimer’s disease. Alan says what family caregiving for Alzheimer’s disease and mountain climbing have in common, and how he wants the funds he raises with mountain climbing to be spent. Sue talks about her work. They talk about the family caregiving experience as the disease progresses from its earliest stages to the end of life. They say what more they want to see done to help family caregivers with their challenges throughout the progress of the disease.
Multiple Sclerosis, Veins in the Brain, and Family Caregivers
Ann Stewart is executive director/client services with the Multiple Sclerosis Society of Canada, Lethbridge & District Chapter. Paul Zook’s wife, Kim, has secondary progressive multiple sclerosis. For her, the controversial treatment for chronic cerebro-spinal venous insufficiency seemed to offer some hope. Ann and Paul discuss the treatment from the perspectives of the Society and the family caregiver, and also from their own families’ experience. They describe what happened when the news of the treatment first broke, and how they and others reacted to it. They explain the questions that then confronted and still do confront family caregivers and their family members. They discuss the findings so far from medical research into the treatment. They talk about their own hopes for the research. They examine their own perspectives on the treatment. They say what more they want to see done to help family caregivers caring for a family member with multiple sclerosis.
Larry’s Ride with Parkinson’s Disease, Betty and the Movie
Betty Smith, the family caregiver, is married to Larry, the star of the movie. Andrew Rubin is producer of the film, Ride with Larry. Larry has Parkinson’s disease. All have family experience with Parkinson’s. Betty talks about Larry’s work before and after the Parkinson’s, and how he gets to work on his riding machine. She talks about the ways they together deal with the Parkinson’s, how they their vision of the future affects the things they do and think about each day. Andrew says how he first met Larry and Betty, and what got him thinking about a film. He explains what type of a film it is going to be, how the funds are being raised for it, the audience he wants to reach with it, and what its messages will be for people with Parkinson’s disease and their family caregivers. They both say what more they would like to see done to tell more stories of family caregiving for Parkinson’s and similar conditions, and what more need to be done to provide more help for family caregivers.
Grandparents as Family Caregivers
Bev Mahone and Pat Montgomery, experienced broadcasters, writers and journalists, are also grandparent family caregivers. They explain how grandparent caregiving has affected their lives and ways of thinking about caregiving. They talk about the grandparent family caregivers they hear from and the challenges these grandparents face including law, rights and red tape, and financial and health challenges. They discuss the questions they are asked and the advice they offer. They describe the blockages that prevent grandparent family caregivers from moving forward. They say what makes the sun shine for them when they hear from grandparents talking about grandparent family caregiving. They talk about the ways in which the grandparents as family caregivers need help, and the type of help they need. They say what they would like to see done to bring more help to grandparent family caregivers and, in particular, what more can be done to help grandparent family caregivers help each other.
Oral health and Family Caregiving
Mickey Wener and Mary Bertone are registered dental hygienists engaged in clinical programs at the University of Manitoba. Both have personal experience with family caregiving. They explain why good oral health is so important, how it links with general health, and what problems are created when it isn’t good. They discuss challenges created by poor oral health for persons who aren’t mobile enough to attend a clinic and who are being cared for by a family caregiver at home or in a residential facility. They describe services provided by dental hygienists, and how dental hygienists work with family caregivers in promoting good oral health. They explain how family caregivers can monitor the oral health of family members, and the techniques family caregivers can use to maintain family members’ oral health. They stress the importance of family caregivers and say what more they would like to see done to bring to promote more team work between dental hygienists and family caregivers.
Physician Home Visits for Seniors and the Family Caregiver
Dr John Sloan specializes in home visiting with the elderly. Noralyn Smiley is a senior who is family caregiver for her mother, a patient of Dr John’s. He calls his patients Sunshiners. They discuss collaborative caregiving and the importance of the family caregiver as a member of the collaborative team. They explain the circumstances that brought Dr John into Noralyn’s Sunshiner caregiving, and generally what family caregivers need from a family physician. They talk about the ways in which the family physician, the collaborative team and the family caregiver work together in meeting the numerous challenges that caring for Sunshiners so often brings. They talk about the questions that family caregivers ask, and the answers that family physicians can and cannot answer. They both say how a home-visiting physician and the collaborative team can provide better care than the hospital, and what they would like to see done to bring more collaborative team work to the homes of Sunshiners.
Host Says What He’s Learned from Family Caregivers
Dr Gordon Atherley, host of Family Caregivers Unite!, explains what he’s learned from family caregivers in the first 50 Episodes of the show. “I want to talk about the things I’ve learned from listening to all the wonderful people who’ve been my Guests in the first 50 episodes of FCGU!”, he says. Some of the things he’s learned include challenges and successes for family caregivers, how family caregivers help other family caregivers, what family caregiving so often involves, particular types of help that’s available for family caregivers, and the influence of family caregivers on the healthcare system. Then, he says, I’ll ask myself how I intend to apply what I’ve learned so I and Family Caregivers Unite! can be more helpful to family caregivers and family caregiving. And also, he says, how his new website, Family Caregivers Unite, http://www.familycaregiversunite.org/, will enable family caregivers to tell their stories, and give as well as receive help.
Realtors Advising Family Caregivers
Mona Gandy has 12 years’ experience as a licensed realtor in the state of Texas. Asko Marjanovic is a Partner in Avant Garde Real Estate, in Toronto, Ontario, Canada. They talk about the ways in which realtors can help family caregivers who have to sell the homes or businesses of family members because of age or health conditions. They discuss the things that can go wrong and the risks in home or business sales in these circumstances, the concerns that family caregivers have, and the help that realtors can provide. They discuss challenges for family caregivers selling homes or businesses of aging parents affected by dementia and similar health conditions that affect the person’s judgment. They discuss advice for family caregivers in selling homes outside of North America. They talk about the situation for families where there is no family caregiver. They say what should be done to encourage family caregivers to get the help of a good realtor in the sale of a family home or business.
Organ and Tissue Donation: Advice for Family Caregivers
Martha Anderson is Executive Vice President of Donor Services at the Musculoskeletal Transplant Foundation. Dr. Frank Markel is the President and Chief Executive Officer of Trillium Gift of Life Network. They describe organ and tissue donation and the benefits that come from it. They discuss the concerns that people have about organ and tissue donation, and how these are addressed. They explain the importance of the family caregiver in family discussions about potential donations. They talk about the things they say to family caregivers caring for family members nearing the end of life. And the things they say to parents discussing donation with their children with life-threatening conditions. They identify and explain the circumstances in which they would advise a family caregiver not to encourage organ and tissue donation. They say what they would like to see done so that family caregivers are increasingly informed about organ and tissue donation and are encouraged to promote it.
Dancing and Dementia
Bob Smith, a retired firefighter now a full-time family caregiver for his wife, and Dr Alexa Roggeveen , a leading researcher, discuss the ways dance helps persons with dementia and their family caregivers. Bob talks about his wife’s health condition and the challenges it creates for them both. Dr Alexa describes the dance classes. They both talk about their experiences with the dance classes, how they help family caregivers and their family members, and how they led to Dr Alexa’s new research into dementia. They both discuss the new research, and say why it is so interesting and important for family caregivers caring for someone with dementia, among other health conditions. Bob says what makes the sun shine for him as a family caregiver. Dr Alexa says what makes the sun shine for her as a researcher involved with family caregivers. They both say what they would like to see done so that dancing classes are extended to and made affordable for more family caregivers in North America.
Authors Talking About Family Caregiving
Lynda Simmons and James Krehbiel are both authors of books about health conditions that involve family caregiving. They talk about the books they’ve written and the ways these reflect aspects of family caregiving. They describe how their own perspectives on family caregiving influence their writing. James discusses his most recent book, ‘Troubled Childhood, Triumphant Life’, which explores circumstances where family caregiving hasn’t worked well. Lynda talks about her most recent book, ‘Island Girl’, a work of fiction about inevitable decline towards the end of life, and explains the role for family caregiving as she portrays it in her book. They both describe the reader whom they had in their mind’s eye when they wrote their last books. They explore the way family caregivers who’ve travelled the hard road of family caregiving turn around and offer help to family caregivers starting out on the road. They tell us about the changes they’d like to see in support for family caregivers.
Long-Term Care Insurance for Family Caregivers
John Schram and Don Fenn, business executives experienced in home healthcare and family caregiving, discuss the help that long-term care insurance offers family caregivers. They highlight the costs of family caregiving. They identify gaps in publicly funded services and explain how long-term care insurance can help plug these. They examine long-term care insurance for family caregivers whose family caregiving starts in the childhood of a family member with an incurable condition. They identify the services covered by long-term care insurance that support family caregivers caring for a family member aging at home with all the quality of life and health challenges for the family caregiver as well as the family member. They discuss public attitudes to long-term care insurance, and say whether effort is needed to change attitudes of the public and government so that insurance provides more support for long-term care and the family caregivers who provide it.
America’s Family Caregiver Award 2010
Joyce Scott is the winner of 2010 national Family Caregiver of the Year Award. Leann Reynolds is President of Homewatch CareGivers. Joyce says what being named the Family Caregiver of the Year for 2010 means to her, describes her experience with family caregiving, and explains how it began. She talks about her family’s tradition of family caregiving. She describes the problems of the people for whom she is family caregiver and others for whom she also provides care. Leann talks about her own experience with family caregiving. She describes what the Family Caregiver of the Year award brings to Joyce. She says how she personally became involved with award, describes its history, explains who is eligible, how people are nominated, and how the award’s winners are selected. They both say what makes the sun shine for them. They discuss the most important challenges for and needs of family caregivers and say how help for family caregivers should be expanded, enhanced and provided.
Family Caregivers Making Sense of the Latest Research
Dr Kim Bercovitz is a medical sociologist with a PhD in Community Health. Craig Thompson is a freelance digital media producer specializing in the development of online support tools for healthcare. They discuss the challenges created for family caregivers by media reports of the latest research into conditions with potential implications for the family, and how family caregivers follow up on these reports. They explain how research and similar organizations connect and communicate with family caregivers. They discuss the extent to which the Internet is replacing doctors as the source of information about the latest research. They talk about the limitations of some of information on the internet. They discuss what more they’d like to see done by healthcare to explain new developments to family caregivers. They say what’s needed to enhance support for family caregivers and their family members struggling to make sense of the latest findings that could be important to their family.
What will happen to my child after I’m gone?
Kenneth Pope is a lawyer specializing in support for individuals with disabilities and their families. Cynthia Martineau is a registered nurse whose daughter, Rachel, has Rett syndrome. They describe their professional backgrounds and their experience with estate planning for family caregivers with teenaged children with special needs. They highlight the future challenges that concern the family caregivers of such children. They talk about arrangements and questions about future quality of life for maturing children who lack a family caregiver. They explain how estate planning helps answer the question, ‘What will happen to my child when I am gone?’ They say why estate planning is so important for so many family caregivers of children with special needs. They say what’s needed to enhance support for children with special needs who mature as adults and are without family caregivers, and they explain the changes they believe are most needed to improve support for such children.
Needs of Children with Autism
Susan Fentie-Pearce is the mother of Keith and Kyle. Malcolm Stanley is the father of Megan. All three of these children have autism. Susan and Malcolm talk about their professional backgrounds and their experience as family caregivers for children with autism. They discuss the challenges they have met and continue to meet as family caregivers. They say why and when it is most important for family caregivers to become the eyes, ears and voice of their autistic children. They explain, for a child with autism, when is it important to keep private the information that he or she has the condition, and when is it important for the information to be shared, and with whom should it be shared. They talk about the quality of life for children with autism and their families. They tell us what makes the sun shine for them and their children. They talk about their activism, compare the services that the children and their families need, and say what needs to be done to improve these services.
Cards to Burst Barriers in Parkinson Disease
Joel Gerstel is the Executive Director of the American Parkinson Disease Association. Barbara Snelgrove is Director of Education and Support Services with Parkinson Society Canada. They discuss the notification card for travellers with Parkinson disease developed by the American Association and the medications card produced by the Canadian Society. They explain the challenges that people with Parkinson disease experience when they travel. They explain the perspectives of the transportation security authorities in the US and Canada, and discuss what the cards do and don’t do. They talk about the way cards could be used by family caregivers. They identify the importance of what they term sensitivity on the part of security personnel. And they share ideas for a notification card system that would be internationally recognized for travellers whose health conditions are not obvious but which nevertheless can cause them problems during travel and even in accessing hospitals.
Peer Support for Persons with HIV/AIDS
Krishna Stone is Assistant Director of Community Relations in the Communications Department at Gay Men’s Health Crisis (GMHC), based in New York. Glyn Townson is Chair, BC Persons With AIDS Society, based in Vancouver, Canada. They explain the mission and histories of their organizations. They talk about the peer-support services their organizations provide to their respective communities. They discuss the role of peer support in the various stages of HIV/AIDS. They explore the question of when, for a person with HIV/AIDS, is it important to keep private the information that he or she has the condition, and when the information should be shared. They describe the quality of life for persons with HIV/AIDS, and how peer support helps improve the quality of life. They say what changes they believe are most needed to enhance support for persons with HIV/AIDS. They tell us whose best interests are served if the decision makers in our society implement the changes they are advocating.
Schizophrenia and Family Caregiving
Chris Summerville is a director of the Mental Health Commission of Canada. Debbie Sirota is a single parent of Tamara, aged 24, who lives with schizophrenia. They discuss services for persons with schizophrenia and their family caregivers, identify challenges the services respond to, and explore experiences. They examine the role of the family caregiver in the various stages of schizophrenia. They discuss the ways in which family caregivers become eyes, ears and voice for the persons they are caring for, and explore the special challenges this responsibility creates for family caregivers. They talk about quality of life for persons with schizophrenia and their family caregivers. They speak frankly about situations in which persons with mental illness suffer from depression, experience stigmatization, and get into trouble with the law. They identify the things that make the sun shine for them personally. They say what changes want to see to bring better support for family caregivers.
Kinship Caring and Grandparents’ Rights
Betty Cornelius is President and Founder of Cangrands National Kinship Support, a Canadian organization. Tammy Brockhaus is 61 years of age, and widowed. She coordinates the Cangrands group in Huntsville, Ontario. They are both grandparent kinship carers. Among many tasks, they are activists for changes in law needed to establish grandparents’ rights relative to kinship caring. The explain kinship caring and why it’s needed, and describe their own family experiences to illustrate the value of kinship caring for grandchildren. They discuss the challenges faced by them and others like them, such as finances, getting support, and having their access to granchildren blocked. They explain the situations that cause grandparents to lose access to their grandchildren. They explore grandchildrens’ health problems like fetal alcohol spectrum disorder, and explain why children with severe health problems do best when they are cared for by grandparents. They highlight things they want changed.
End of Life Caring and Care
Viki Kind is a clinical bioethicist in Los Angeles and Margaret Anderson is founder of Ian Anderson House, a residential cancer hospice in Oakville, Ontario. They identify the challenges for family caregivers when a loved one is at the end of life. They explain ‘compassionate decision making’, ‘hospice’ and ‘palliative care’ and discuss the ways in which these approaches support family caregivers in meeting their challenges. They explore what they see as the rights of people at the end of life and say, in their experience, how physicians and other healthcare professionals view these rights. They talk about the need to manage the expectations of everyone involved, including the person who is approaching the end of life. They examine the information needs of family caregivers and advocacy for and by family caregivers. They discuss the sensitivities of the role of volunteers in end-of-life caring. They explain how quality of life and dignity maintained through end-of-life care.
Optimism for Family Caregivers
Ralph James Savarese authored ‘Reasonable People: A Memoir of Autism and Adoption’. Linda Hurren, President of York Autism Centre, is now starting ‘The Making Small Talk Academy”. They talk about their professional backgrounds and describe their experience with family caregiving for autism. Ralph explains what led him to write his book. Linda describes her work in evolving her programs for children and their families involved with autism. They talk about the challenges for children and their family caregivers. They discuss the positive signals that family caregivers receive and the advice that they believe family caregivers need to interpret these signals. They highlight the importance of inclusion in school, workplace and community. They each point to the things they have found to bring optimism for family caregivers involved with autism. They identify the things that need to be done to improve optimism-building support for family caregivers involved with autism in North America.
Eldercaring: Navigating the System
Cindy Laverty is founder The Care Company, based in Southern California. Marilyn Spencer is family caregiver for her mother, who is enduring the ravages of Alzheimer’s disease. They explain how they each became involved with Eldercaring. They analyze their personal experiences with Eldercaring. They discuss the key challenges for family caregivers involved in Eldercaring. Cindy outlines the key points in her book, and the questions that her radio show receives. Marilyn talks about the ways she has dealt with the challenges, and what she has learned from them. They both explain the signals that start family caregivers off on their journey navigating the care systems. They discuss important signals that family caregivers should be looking out and listening for. They explore some of the problems associated with the signals and talk about the types of sources of advice that are helpful to family caregivers. They say what they want to see done to improve Eldercaring in our societies.
Dementia Beyond Drugs: Inspiration for Family Caregivers
Dr Al Power, MD, is author of ‘Dementia Beyond Drugs: Changing the Culture of Care’. Sarah Rowan is the ‘Heart Whisperer’ who lives the belief of family caregiving. They analyze current medical approaches to dementia and the problems these create, especially for family caregivers. They examine the consequences of the medical use of medications for families and family caregivers. They discuss quality of life issues for the family members with dementia and for family caregivers. They identify the changes they believe are necessary to improve on the current approach to dementia. They explore alternative approaches and the implications for family caregivers whose family members are living at home or in a care facility. They discuss the solutions that are designed from the new approaches, and what these mean for family caregivers. The talk about harnessing Social Capital, of which family caregiving is an important part, as a way implementing the solutions they advocate.
Family Caregivers Caring for Family Information
John Mills is the Founder and CEO of eCare Diary.com and Susan Baida is eCareDiary.com’s Co-founder and Chief Marketing Officer. A husband-and-wife team with extensive experience in healthcare policy and technology and in companies responsive to consumer needs, they became family caregivers. They were disappointed by and frustrated with the quality and level of family caregiver support they encountered. They describe how this experience convinced them to set up eCare Diary to improve information support for family caregivers. They talk about the information-related challenges faced by family caregivers and how the e-Care Diary helps them. They discuss caring for health and other family information, and explain why caring for family information is such an important responsibility for family caregivers. They explore what needs to be done to help family caregivers use information technology and the internet to enable them to safely manage their families’ health and family information.
Living Safely at Home
Haley Samuelson and Bill Archer talk about their respective projects, LivingWell@Home and MonAmiCaregiving. Both projects involve technology designed for living safely at home. Haley and Bill talk about living at home as the preferred option for more and more persons who rely on family caregiving. They explain their projects. They recognize that, for family caregivers, safety in the home is a big concern especially when the family member is alone any part of the day or night. They illustrate from their experience the impressive benefits that technology can bring to family caregiving. They explain the importance of privacy. They explore the concerns that family caregivers sometimes have about technology. They discuss the challenges for home safety viewed from the perspective of persons living at home, of their family caregivers, and of the designers of the technology. They explore the challenges of costs of technology and say what they would like to see done to reduce these.
Homewatch Caregivers University and family caregiving
Leann Reynolds is President of Homewatch CareGivers and the driving force in the development of the Homewatch CareGivers University. Colleen Krebs works with Homewatch CareGivers. She’s taken extensive training with the Homewatch CareGivers University. They discuss the links between the training of professional caregivers and the training of family caregivers. From their personal as well as their professional experience, they highlight the training needed for family caregivers who are embarking on family caregiving. They discuss training for professional caregivers in working with family caregivers. They say whether personal experience of being a family caregiver is important for professional family caregivers. They also say whether training for family caregivers helps the professionals who are working with them in providing care to a family member. They discuss the importance of family caregiving and professional support for the healthcare system, and how they see the future.
Advice about the advice that’s given to family caregivers
Dr Dave Travland, a clinical psychologist, leads the Caregiver Survival Institute. Bruce Ritchie is Moderator & CEO of the Fetal Alcohol Disorders Society. They both have powerful experience as family caregivers especially in the care of children with serious challenges. In their work, they support family caregivers facing a wide range of challenges. They discuss the challenges they personally experienced. They describe how their own experiences guide them in providing advice. They talk about advice that’s most useful to family caregivers, and suggest ways for family caregivers to recognize useful advice. They explain why family caregivers who have travelled the caregiving road are so often the best sources of advice for other family caregivers. They analyze the characteristics that help professionals like physicians and psychologists to be most helpful to family caregivers. And they encourage family caregivers to ask the professionals about their own family caregiving experience.
The Autism Acceptance Project
Estée Klar is founder and executive director of The Autism Acceptance Project, www.taaproject.com. She’s the mother of a young autistic son, Adam. Dr Kristina Chew is an Associate Professor of Classics at Saint Peter's College in Jersey City, NJ. She blogs at http://autism.typepad.com about life with her 13-year-old son, Charlie, who's on the moderate-to-severe end of the autism spectrum. Estée and Kristina explain what acceptance means to parents of children with autism, to children and adults with autism and to the communities in which they all live. They describe the positive changes to their own lives that acceptance brought. But they warn that acceptance is not an easy thing to achieve. They tell us about the things that make the sun shine for them. And they describe the action that they would like to see by government and healthcare systems for more and better support for family caregivers, and children and adults with autism.
Recognizing the Caregiver Crisis: Family Caregiver of the Year Award
Leann Reynolds is President of Homewatch CareGivers, sponsors of the Family Caregiver of the Year Award, and hosts of www.familycaregiverblog.com. Larry Ellis is President of SoftWright LLC, of Aurora, Colorado and a former winner of the Family Caregiver of the Year award. They both are united in their experienced-based view that family caregivers aren’t acknowledged, respected and supported to anything like the degree they deserve. In this Episode, ‘Recognizing the Caregiver Crisis: the Family Caregiver of the Year Award’ they explain the purposes of the award, how to nominate someone, and how it reflects their own experiences with family caregiving and as a family caregiver. They share their own stories. They discuss the challenges faced by family caregivers, and their needs. They tell us what they would like to see done to help family caregivers gain more recognition for their services not only to their own family, but to the entire healthcare system.
Family Caregivers Helping Family Caregivers via Social Media
Kathy Kastner and Nancy Coldham are experts prominent in media and strongly interested in social media. They share their knowledge and experience with family caregivers who’ve travelled the hard road of family caregiving and then turn around to offer a helping hand to family caregivers just starting their journey down the family caregiving road. They give us their impressions of family caregivers and family caregiving. They explain how social media works, and how family caregivers can use it to tell their stories. They offer advice to family caregivers who want to help other family caregivers, via social media. They explain the challenges for family caregivers who want to use social media and suggest the ways to overcome these. They tell us what success is in the use of social media, and how family caregivers can recognize success and benefit from it. They recommend things they want done by governments and healthcare systems to support family caregivers helping family caregivers.
Turning Vision Challenges into Visible Successes
Melanie Cooper, the first legally blind teacher to graduate in Ontario, founded the Connect Learning Centre. Dr Stuart Wittenstein is the superintendent of the California School for the Blind. Melanie explains her experience with vision loss and the challenges it created for her. She talks about the history of Connect Learning Centre, and speaks about the types of vision challenges of the adults attending the center. She discusses the career paths for the trainees when they leave the center. Dr Wittenstein describes the history and work of the California School for the Blind. He talks about the types of vision challenges of the children who attend the school. He explains the teaching methods used in the school’s programs, and discusses the use made of computer technology. He outlines the career paths for the students. Together they explore the financial and other difficulties of meeting the needs of children and adults with vision challenges, and say what they would like to see done.
Canine Vision Dogs and Family Caregiving
Jason King has Redford, his Canine Vision Dog Guide. Ian Ashworth is Program Director, Lions Foundation of Canada Dog Guides Training Centre in Oakville, Ontario. Jason describes his experience with his disability and what led him to get Redford. He explains how Redford helps him and those around him with his challenges, and the things that Redford does that make the sun shine for him. Ian describes his work with Dog Guides Canada in training special skills dogs. He explains the types of challenges that the special skills dogs are trained to help with. He discusses the typical questions that he is asked by people who have disability-related challenges, or their families, who are considering a Canine Vision dog. He tells us about the things that make the sun shine for him when he works with a team such as Jerry and Redford. Together, Jason and Redford explore the things that should be done to bring more Canine Vision dogs to help more people with disability related challenges.
Special Skills Dogs and Family Caregiving
Jerry Ford has Lilo, his special skills dog guide. Rhonda Workman is Head Trainer for Hearing Ear Dogs and Special Skills Dogs of Canada, Lions Foundation of Canada. Jerry describes his experience with his disability and what led him to get Lilo. He explains how Lilo helps him and those around him with his challenges, and the things that Lilo does that make the sun shine for him. Rhonda describes her work with Dog Guides Canada in training special skills dogs. She explains the types of challenges that the special skills dogs are trained to help with. She discusses the typical questions that she is asked by people who have disability-related challenges, or their families, who are considering a special skills dog. She tells us about the things that make the sun shine for her when she works with a team such as Jerry and Lilo. Together, Jerry and Lilo explore the things that should be done to bring more special skills dogs to help more people with disability related challenges.
Hearing Ear Dogs and Family Caregiving
Christine Holloway has Ilene, her hearing ear dog guide. Rhonda Workman is Head Trainer for Hearing Ear Dogs and Special Skills Dogs of Canada, Lions Foundation of Canada. Christine describes her experience with hearing problems and what led her to get Ilene. She explains how Ilene helps her and those around her with her hearing problems, and the things that Ilene does that make the sun shine for her. Rhonda describes her work with Dog Guides Canada in training hearing ear dog guides. She explains the types of hearing problems that the dog guides are trained to help with. She discusses the typical questions that she is asked by people who have hearing problems, or their families, who are considering a hearing ear dog guide. She tells us about the things that make the sun shine for her when she works with a team such as Christine and Ilene. Together, Christine and Ilene explore the things that should be done to bring more hearing ear dogs to help more people with deafness.
Seizure Response Dog Guides and Family Caregiving
Hastings Saunders is a 9-year old boy with epilepsy. His mother, Sandra Saunders, found him a seizure response dog guide. It was trained by the Lions Foundation of Canada Dog Guides Training Centre, where Ian Ashworth is Program Director. Sandra talks about the family’s experience with seizures. She explains what led her to think of a dog guide, and about the particular challenges of seizures that she hoped it would help with. Hastings talks about the dog, Manny, and how it fits into the family. He describes how Manny helps him. Ian discusses the work of Dog Guides Canada in the training of seizures assistance dog guides. He talks about the challenges of seizures that the dog guides are trained to help with. He explains how the dog guides sense a seizure, and describes the response they are trained to provide. All three explore the ways they believe would enable more children who have seizures, their families and their family caregivers to be helped by seizure response dog guides.
Seniors as Family Caregivers
David Cravit and Brent Green are writers, analysts and senior executives experienced in advertising, marketing, consulting, speaking and training. They share a special interest in the market place occupied by the generation of seniors increasingly referred to as Boomers. They are well aware of the challenging contradiction that, while the Boomer generation of seniors becomes more and more active, effective and influential, seniors are increasingly perceived by governments as ever-more expensive burdens for healthcare systems. They will explore the possibilities for Boomers to increase their contribution to family caregiving for their parents, siblings, extended families, children, grandchildren, neighbors, community members, friends and others. Is this the way that Boomers can help save the healthcare system from financial exhaustion caused by the health requirements of seniors?
Family Caregivers and Dog Guides for Autism Assistance
Roxanne Davis is the mom of an autistic son, Mason. Chris Fowler, a professional Dog Guide trainer since 1994, trained the two autism assistance Dog Guides, Zeus and Dublin, that Roxanne Davis talks about. Roxanne and Chris tell us about the experience of autism and the assistance that Dog Guides provide to autistic children, their families and their family caregivers. Chris talks about the Lions Foundation of Canada Dog Guides and its work. Roxanne tells us about her family’s experience with Zeus and Dublin. Chris explains how Dog Guides are trained and how the families are prepared for the extra ‘parents’, as Roxanne calls them. They explain the particular challenges of autism that Dog Guides help with. They discuss the advice that family caregivers need when they are thinking about a Dog Guide for autism. They explore the developments in support systems that they believe would enable more autistic children, families and family caregivers to be helped by Dog Guides.
When a loved one chooses home to die: how the family caregiver and the family doctor work together
Dr Sandy Buchman is an experienced family physician specializing in home-based, end-of-life care. Don Fenn is Publisher of the Family Caregiver Newsmagazine, which he founded after 11 years as family caregiver for his parents with Alzheimer’s disease and cancer. Dr Buchman describes his medical practice. Mr Fenn highlights his experience as family caregiver. They talk about the discussion within a family that occurs when it is confronted with the option of the family member’s dying at home. They point to important matters that should be considered by the family. They explore the organization of end-of-life care. They examine the ways in which the team work between the family caregiver and the family physician can be most successful. They talk openly about the stresses and the peace that home home-based, end-of-life care brings. They say what additional support and help they would like to see for family caregivers when a loved one chooses to die at home.
Lou Gehrig’s disease, ALS and MND: Support for Family Caregivers
David Cameron is President & CEO of the ALS Society of Canada. Rodney Harris is the Chief Executive Officer of the Motor Neurone Disease Association of Victoria, Australia. They describe their organizations. They respond to points from Episode 3, Jan 26, 2010, ‘Family Caregiving and Lou Gehrig’s Disease’, raised by Colleen Smailes, whose husband died from Lou Gehrig’s disease in 2009, and Melanie York, who was diagnosed with it in 2008. The points include support for family caregivers in assisting family members with the disease in their shift from independence to dependence, from communication to speechlessness, and from privacy to relentless exposure; training for family caregivers in recognizing, understanding and providing for the needs of the person; support for family caregivers in advocating for the person, and in recognizing and managing their own needs; and ways to improve recognition of the role of caregivers and enhance understanding of challenges of the disease.
Civil Rights and Civil Liberties for Family Caregivers
Dr Deborah Peel is a practicing physician and founder of the US organization, Patient Privacy Rights. Ms Micheal Vonn is a lawyer and the Policy Director of the British Columbia Civil Liberties Association. Both are deeply involved in pressing for better protection of healthcare privacy in the increasingly electronic world of healthcare. They highlight the services that their organizations provide and highlight those most likely to be helpful to family caregivers, in all types of families, who provide care for a family member. They explain the types of risks that loss of healthcare privacy may create for family caregivers and the family members they care for, and they way these risks can undermine relationships within the family. They discuss the effectiveness of privacy laws in the protection of privacy for family caregivers and family members. They say what changes they would like to see for improving healthcare privacy for family caregivers and the family members they care for.
Grandparents and Kinship Family Caregiving
Betty Cornelius and Sherry Johnson are kinship caregivers. Kinship caregivers are often grandparents, but they may be aunts, uncles, cousins, or others who are caring for children or youths in need of care or protection. Kinship caregiving is the full-time nurturing and protection of a child who is the caregiver’s kin but not a son or daughter. Betty and Sherry share with us their stories as grandparents as kinship caregivers. They talk about support groups they founded or have experience with. They identify the children’s health conditions that so often create the call for kinship caregiving. Drawing on their own experience, they pinpoint the challenges faced by kinship caregivers, and say what makes the challenges so difficult. They talk about the challenges to the health, quality of life and of kinship caregivers, how they personally deal with these, and the help and support they require. They offer advice for people who are just starting down the road they both travelled.
Kate's Voice: Children with Special Needs and Music Therapy
Laura Rutherford and Meredith Pizzi are linked by music therapy. Laura is the mother of Kate, who has multiple developmental and physical disabilities and who inspired Kate’s Voice, a non-profit group that grants music therapy programs to special-needs classrooms. Meredith, a professional music therapist, is the Founder and Director of Roman Music Therapy Services, a music therapy agency which serves children and adults with social, emotional, cognitive, behavioral, physical, and educational needs.
They talk about their work in and for music therapy and how they came to be involved. They explain the ways in which music therapy helps children with special needs. They describe their success stories. They offer advice to family caregivers who are wondering if music therapy will help their special-needs children, and to family caregivers just starting down the road travelled by Laura, Kate and the family. And then they say how they would like to see music therapy programs develop.
Alzheimer’s Disease and Family Caregiving at Home
Ruth Drew and Joan O’Callaghan are both highly qualified professionals in their fields. Both have experience of Alzheimer’s disease. Ruth is Director of Client and Information Services for the Alzheimer’s Association, where she works with people with Alzheimer’s disease and with their family members. Joan is a faculty member at the Ontario Institute for Studies in Education at the University of Toronto. Her experience of Alzheimer’s disease is as a family caregiver at home for her late mother, who suffered from it.
Ruth and Joan talk about their experiences from the perspectives of a professional providing help to family caregivers and of a person who became a family caregiver. They discuss the challenges. They explore ways for coping. They offer advice for who people who are just starting down the path of family caregiving. And they explain what they want to see done to bring more help for family caregivers caring at home for loved ones with Alzheimer’s disease, a heavy burden.
Family Caregivers and Fetal Alcohol Spectrum Disorder
Teresa Kellerman and Bruce Ritchie are parents each with a child with fetal alcohol syndrome. This is caused by alcohol consumed by the child’s mother during pregnancy. Alcohol consumed during pregnancy is the leading cause of birth defects and childhood disability in North America. Its most critical effects are behavioral. These are the impulsiveness, the poor judgment, and the social immaturity that makes the child so vulnerable in school, community, and life. The child's emotional and social developmental age is about half the chronological age. Even as the child grows into adulthood his or her functioning may be at the level of a 5 or 6 year old. Frustrated by the inability to control his or her own behavior, the child may become angry or depressed…and may get into trouble again and again, at risk of yet more problems, such as getting arrested, addicted, evicted, or fired, or worse. The challenges for family caregivers, which are huge, are the topic for Teresa and Bruce.
Professionals with significant disabilities: balancing health, caregiving and career
Dan Thompson and Dr. JR Harding are successful professionals. Both have significant disabilities. For them, balancing health, caregiving and career is their continuing challenge. They describe how they overcome it, day by day, hour by hour. They explain what a significant disability is and what it means to them personally. They talk about their professional lives, how they work, and how their work helps others with significant disabilities.
What got them started in their careers? What things gave them the greatest challenges? What things now give them the most job satifaction, and why these generate so much satisfaction? What advice do they have for people with significant disabilities who want to have their own businesses?
They talk about caregiving they depend on. How it is organized and by whom: who provides it. And then they share with us their vision for the future for persons with significant disabilities who want to succeed in balancing health, caregiving and career.
Technology Helping Family Caregivers
Mark Rutherford of Philips Healthcare and Bill Archer of MonAmi Caregiving Ltd talk about their organizations’ missions, products and services that serve family caregivers. They tell us what they see as the main benefits that their products and services offer to family caregivers.
They discuss the family caregivers’ challenges that their products and services help meet. They describe the features of these products and services that they particularly emphasize to family caregivers. They say how their products and services help ease the various types of burdens on family caregivers.
They give us their vision for the technology of tomorrow that does even more to support family caregivers. Then they explore the question of who pays for and who benefits from the new technology.
Finally, they share with us the things they would do if they were appointed by their governments to oversee the development of services to quickly expand the role of technology for family caregiving.
Family Caregiver Burnout
Physician Dr Wendy Graham and psychologist Dr David Travland discuss burnout in family caregivers.
Burnout is widely known to be a risk which overtakes too many family caregivers as they grapple with the day-in, day-out challenges of family caregiving. The two Guests explain what burnout is, what causes it, and what its consequences are.
They talk about the things that lead to burnout that they see in their professional practices. The sacrifices by and stresses on family caregivers—on their mental and physical health, on their quality of life, on their finances.
They explore what is done to help family caregivers affected by burnout. How are they supported? How are they treated? How are they helped in preventing it? What should happen when the time comes that the condition of the person they are caring for is too much of a challenge?
Then they say what they think needs to be done to develop more and better services to prevent and treat burnout for family caregivers.
Security for Family Caregivers and their Families
Michael Power is a Toronto-based lawyer who advises public and private sector clients on privacy and information risk management issues. Tom Warren is a former police officer with the information security and data forensics company, Net-Patrol, which he founded.
In ‘Security for Family Caregivers and their Families’ they discuss fraud, robbery, violence and other forms of harm resulting from criminal activity in which people’s private information is involved. They explain the ways the bad guys operate.
They point out the main methods of protection and prevention that are of interest to family caregivers. They analyze the types of advice that family caregivers may need, and suggest where they should go for help and advice if they are worried. They debate the ways that technology can help family caregivers.
They exchange opinions on what’s to be done by government to help family caregivers protect their families and the family members they are caring for.
Pharmacists and Family Caregivers
In the episode, ‘Pharmacists and Family Caregivers’, Bill Brown, a pharmacist with extensive experience in the business of pharmacy and healthcare describes the new world of pharmacy and what this means for family caregivers.
Family caregivers often face challenges in helping their family members with their medications. How do pharmacists help them and their family members?
But Pharmacists are providing more and more healthcare services beyond those of filling prescriptions and advising on medications. What are these services and what needs of family caregivers and their family members do they currently meet? What are the challenges that pharmacists face in providing for them? What have pharmacist learned from their support of family caregivers?
What does the future hold for family caregivers as pharmacists expand their services?
MedicAlert and Family Caregiving
Ramesh Srinivasan and Robert Ridge are, respectively, Senior Vice President of the US MedicAlert Foundation and President and CEO of the Canadian MedicAlert Foundation. In MedicAlert and Family Caregiving, they explain the services that MedicAlert provides and how these help family caregivers as well as the persons who receive care from family caregivers. They discuss the types of medical and personal emergencies that MedicAlert focuses on, the way these occur, and the challenges these bring to family caregivers. Of these challenges, they talk about those that arise in connection with medical conditions for which there is no cure and which progressively undermine the health and wellbeing of persons with these conditions. They explain how MedicAlert services help with these types of challenges. Drawing on their personal experience, they say what changes they would implement if they were appointed by their governments to lead the development of family caregiving in their countries.
Family Caregiving in Immigrant Families
Dr Joan Lesmond and Donna Schempp are both with organizations providing care to immigrant families and their family caregivers. The organizations are, respectively, Saint Elizabeth Health Care, in Toronto, and the Family Caregiver Alliance, in San Francisco. From their experience, Dr Lesmond and Ms Schempp will talk about the challenges faced by family caregivers in immigrant families.
All family caregivers face challenges because family caregiving is demanding work. Dr Lesmond and Ms Schempp will discuss the special challenges to family caregivers in immigrant families. They’ll explain the things that make the challenges special. They’ll describe how immigrant family caregivers deal with these special challenges. They’ll say what types of help immigrant family caregivers need and receive to help them with these special challenges.
And they will point to changes they think are needed in the way immigrant family caregivers are helped.
Double-Duty Family Caregivers
Dr Catherine Ward-Griffin is a Professor of the Arthur Labatt Family School of Nursing at the University of Western Ontario. Judith Phillips is Professor of Gerontology and Social Work in the Centre for Innovative Ageing at Swansea University, Wales. They discuss family caregiving, in which both of them have done extensive research, when the family caregiver is also a woman, often a nurse, employed in healthcare. They call this double-duty caregiving.
They describe the types of care double-duty caregivers provide, who they provide it to, what it involves, and what challenges it creates for the double-duty family caregivers.
They discuss the challenges to for the double-duty caregivers themselves--to their health, to their quality of life, to their finances: what support is needed and given?
They examine the impact on the healthcare system of double-duty caregiving, and tell us about improvements they want in government policy for better support for double-duty caregivers.
Caring in Stages
Paul Hogan and Sharon Galway are with Home Instead Senior Care, the world’s largest senior-care business of its kind.
Paul is co-founder of the Home Instead organization, headquartered in Omaha, Nebraska. He’s the author of the recent book, Stages of Senior Care, published by McGraw-Hill. Sharon owns the Home Instead Senior Care office in North Toronto, Ontario, where she fulfills her personal commitment to seniors’ independence and successful aging at home.
Paul explains the stages of senior care, and how these relate to family caregivers. Sharon talks about the services she provides and how these relate to the challenges faced by family caregivers. They talk together about these challenges caregivers, identify the most challenging, and speak about supporting family caregivers. They explore the benefits of seniors staying home and independent; and the costs, too.
And they talk about the things they would like to see happen to strengthen services for family caregivers.
Caregiving in the US and Canada: AARP and CARP Perspectives
The healthcare systems of the US and Canada rely on the unpaid help of family caregivers. Family caregivers are the people who provide care to family members suffering health challenges.
AARP and its Canadian counterpart, CARP, advocate for US Boomers and Canadian Zoomers, the very people who are the family caregivers.
Many family caregivers provide care for aging parents with long-term and, often, incurable medical conditions. Other family caregivers provide care to their children with special needs. Either way, the family caregiving is intense, demanding and, all too often, a stress and strain on the health of the family caregiver. It can be financially burdensome, too.
AARP’s Senior Vice President, Dr Susan Reinhard, and CARP’s Vice President Advocacy, lawyer Susan Eng, discuss the ways in which their organizations support family caregivers, the things for which they advocate on behalf of family caregivers, and the changes they want to see in the healthcare systems.
Family Caregiving and Lou Gehrig’s Disease
Melanie York, who has Lou Gehrig’s disease, and Colleen Smailes, whose husband Clayton died from it in 2009, share their experience with and insights into family caregiving for this devastating, incurable disease.
Also called ALS and motor neurone disease, Lou Gehrig’s disease attacks the brain and nervous system. It affects around 33,000 people in North America.
Progressing in phases, it destroys the brain’s ability to start and control movements. It causes loss of strength and the ability to move the arms, legs, and body. It brings failure of the muscles in the diaphragm and chest and therefore loss of the ability to breathe without ventilation support. It commonly results in death from respiratory failure within 3 to 5 years though 10 percent of persons survive for 10 or more years.
But it never removes the ability to see, smell, taste, or hear, or to recognize touch. Nor does it usually impair thinking or other mental abilities.
Family caregiving for dementia
Dementia is the name for various conditions that cause loss of memory, judgment and reasoning, and changes in mood, behaviour and communication abilities. By far the most common form of dementia is Alzheimer’s disease.
Alzheimer’s disease can affect adult men and women of all ages though it mostly occurs in persons over the age of 65. It’s a disease of the elderly that affects 8 percent of persons over the age of 65 years, and 35 percent of seniors aged 85 years and over.
Family caregivers notice that their family member with Alzheimer’s disease is experiencing gradual onset and often unpredictable but continuing decline of memory, changes in judgment and reasoning, and loss of ability to perform familiar tasks.
Dr John Sloan and Professional Outreach counselor, Katie Griffiths, share their experience and understanding of the mental, emotional and physical challenges for family caregivers caring for family members with Alzheimer’s disease and or other types of dementia.
Family caregivers speak: Family caregiving for children with serious medical conditions for which there is no cure
Two mothers of children with severely disabling, incurable medical conditions share with us their experiences as family caregivers. One of them recalls her memories of her child, who died three years ago. The other describes the changes in her child’s condition, and how these affect her family caregiving.
The host, a doctor, describes the medical impact of the conditions.
The mothers show us what it really means to be a family caregiver, the person who provides care when everyone else has gone home. They tell us about the things that sustain them in their family caregiving. They talk about the effects on the family as a whole, including the brothers or sisters of the child. And the happiness they all experience.
They explain the things that enable them to cope. The advice they offer family caregivers caring for children with grievous, incurable conditions.
They tell us what changes they would introduce if the government put them both in charge of family caregiver support.