Season One |
Mapping the Dementia Journey Series
Our podcasts enable people with dementia and their care/life partners to share experiences and thus enable their peer listeners to understand and gain insight into their own experience and strengthen their adaptive skills. Care providers understand this lived experience more fully and the public becomes more aware of what it means to live well with dementia. Each podcast is about 20 minutes in length, and new podcasts are added periodically.
The first podcast series features conversations between David Harvey, people with lived experience, an educator, and a researcher about what it means to change and adapt to living with dementia. The second is on "The System Journey" and features conversations with people living with dementia, care partners and clinicians.
Since the release of our podcasts, we have received some positive feedback. Here are a few quotes from some of or listeners.
"They were very well done. Honest. Heart breaking but hopeful. They hit home with me.
We as a family are trying to learn more about how to deal with the personal ways this effects you and how to help the person living with the dementia to have good days. The dialogues were very true to what we are going through. I have already sent the link to all family members. My family recently all took the workshop on the dementia journey, another great piece of information."
Another listener wrote:
"I have been listening to the podcasts today and I wanted to say how amazing they are! David did a wonderful job asking important questions and he also did a great job making the interviewee comfortable to share such personal information. The tips that the interviewee’s shared and their personal stories are going to be so helpful for people who are in similar situations as them."
The first podcast series features conversations between David Harvey, people with lived experience, an educator, and a researcher about what it means to change and adapt to living with dementia. The second is on "The System Journey" and features conversations with people living with dementia, care partners and clinicians.
Since the release of our podcasts, we have received some positive feedback. Here are a few quotes from some of or listeners.
"They were very well done. Honest. Heart breaking but hopeful. They hit home with me.
We as a family are trying to learn more about how to deal with the personal ways this effects you and how to help the person living with the dementia to have good days. The dialogues were very true to what we are going through. I have already sent the link to all family members. My family recently all took the workshop on the dementia journey, another great piece of information."
Another listener wrote:
"I have been listening to the podcasts today and I wanted to say how amazing they are! David did a wonderful job asking important questions and he also did a great job making the interviewee comfortable to share such personal information. The tips that the interviewee’s shared and their personal stories are going to be so helpful for people who are in similar situations as them."
The research that is the basis of our podcasts is on this website in the section titled "Mapping the Dementia Journey"
Part 1: Changing & Adapting.
The following podcasts speak of first-hand experiences with the various changes that people with dementia and care partners go through as they move along the dementia journey, and how they tend to go about adapting to those changes.
|
Episode 1 of the Changing and Adapting series features an interview with Guy Chadsey whose spouse Alison has dementia. Guy talks about some of the early indications of Alison’s condition and his struggle to live positively.
To begin, we hear a poignant story about the sudden turning point of Alison’s dementia and the helplessness and panic that Guy felt as he moved further into his role as her caregiver. Daunted by not knowing what to do or where to turn, he found tremendous help and support through the Alzheimer Society and their First Link program. Guy talks about finding purpose and positivity within his “new normal” by becoming an advocate for caregivers and by exploring the transformative aspects of caregiving. He says he has developed strength in patience, understanding, tolerance and empathy, which he believes are all necessary qualities in providing care. He then tackles the tough topic of redefining the marriage relationship within the context of advanced dementia and losing one’s spouse in “the long goodbye”. To connect with the Alzheimer Society’ First Link Program visit their website at: https://alzheimer.ca/en/help-support/programs-services/first-link To view the Alzheimer Society’s guide to Understanding How Your Relationship May Change click here: https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/understanding-how-your-relationship |
|
Episode 2: Roxanne Varey has dementia and has become an advocate for creating more opportunities for people with dementia in the workplace. Roxanne has written poetry to help her understand and express some of her inner experience.
After struggling with her speech and finding some of her regular tasks at work challenging, Roxanne went to see her doctor, thinking that she may have had a small stroke. She underwent numerous rigorous tests and at age 51 was diagnosed with frontal temporal dementia with primary progressive aphasia in what she describes as a very cold and blunt way by the neurologist. This lit a fire in her to begin advocating to media, MPs and care providers for greater education and compassion surrounding dementia and to help end the stigma that can often go along with it. She talks about working while dealing with cognitive difficulties and how employers need to adapt responsibilities and policies to address this from a human rights standpoint; to recognize dementia as a health issue and not one of an employee’s performance. Amidst her changing landscape, Roxanne says “one of the great blessings” that comes with dementia is finding joy in simple things and living in the moment. |
|
Episode 3: Louise Milligan’s husband Gord was diagnosed with dementia while still teaching and raising two daughters. Louise speaks eloquently about the challenges their family faced and how she was able to use community resources to help.
She tenderly recounts the arc of Gord’s illness over the few short years from pre-diagnosis to death and the tough decisions and transitions throughout their journey with dementia; from leaving work, to sharing the diagnosis with their adolescent daughters to utilizing day programs and eventually long term care. Louise tells us about the appointment with the family doctor where she first heard the heart-sinking words “Alzheimer’s Disease” delivered in a very brief and clinical way and about how she sought support from the Alzheimer’s Society to ease the isolation and the fear that can go along with that diagnosis. To prepare for her changing role as a wife and mother, Louise decided to learn more about the disease, it’s progression and what she could do to help Gord and her children by utilizing the great online and human resources that the Alzheimer’s Society has to offer. Listen until the end of the episode to hear Louise recount her touching last moments with Gord and her sage advice to those in similar situations. |
|
Episode 4: Susan Bithrey and her husband Reg were looking forward to the perfect retirement until life interrupted. Susan describes how she reframed her experience and found ways to affirm her husband’s strengths, even as they diminished. In the process, she found new strengths within herself.
As a retirement gift, Susan was given a journal to record their many “golden year’s” adventures that they had planned together. Instead it sat empty until a year before Reg’s Alzheimer’s diagnosis, when she started to keep an account of her concerns about his memory struggles. It became a five volume tool for documenting the disease and for reflective learning for her and she generously shares her very poignant first entry with us. Susan honestly reflects on having to learn on the job of becoming a caregiver; figuring out how and when to roll up her sleeves and jump in and when to have Reg speak for himself, make his own decisions and recognize his ability to do so. She also bravely shares some stories surrounding the heartbreaking personality changes that her husband went through and recommends grief counselling for caregivers in this situation. Her humble and wise words to conclude this episode will resonate with anyone else encountering the same circumstances. |
|
Episode 5: Too often people can drift away, but Penny Stager has not. As a member of a large extended family, Penny has helped the family out as they supported their mother and mother-in-law and now Penny is doing what she can to support her brother-in-law, Al.
As a nurse herself, Penny has taken an active role in her in-law’s lives with dementia and provides her observations on their day-to-day experiences, some of which have been difficult and emotional. She goes on to discuss the possible familial links to the disease as well. Penny shares some of the coping mechanisms and easy solutions her brother-in-law, Al, has employed to simplify living with dementia and talks about some of the volunteer work and activism she and Al are engaged in. These have helped him maintain motivation to continue with activities crucial for his health, both social and physical, including Taking Control of Our Lives and The Blue Umbrella Program (links to which can be found below). She touches upon the difficult topic of the stigma surrounding a dementia diagnosis, how upsetting that stigma can be for the person living with it and the need for people to remember that you are still dealing with the same person, the same friend and to treat them as you always have. She also urges people not to forget the often overlooked caregivers who will also need support and connection. Taking Control of Our Lives: https://archive.alzheimer.ca/sites/default/files/files/chapters-on/gsc/self%20management%20spring%202018%20flyer_1.pdf The Blue Umbrella Program: https://alzheimer.ca/lanark/en/help-support/programs-services/blue-umbrella-program?gclid=EAIaIQobChMI65CCjcC87QIVCpezCh2Cvg99EAAYASAAEgJ9efD_BwE |
|
Episode 6: This episode involves a panel of 4 people talking about the importance of “Pumping Up the Volume” so that people with lived experience will have their voices heard. Panelists include advocates for people with dementia and care partners, our research associate and a dementia educator.
David Harvey hosts this podcast series for people with lived experience of dementia (either themselves or as a caregiver) to share stories to increase our collective understanding and insight about dementia. The guests in this episode are Mary Beth Wighton, chairperson for the Ontario Dementia Advisory Group, Kathy Hickman, an education specialist for the Alzheimer’s Society of Ontario, Guy Chadsey, care partner to his wife who is living with dementia and Dr. Elaine Wiersma, professor at Lakehead University and lead researcher of The Mapping Project, which is the basis for this podcast. Our panelists examine from each of their perspectives why it is so important for people living with dementia to achieve a stronger voice in the community. After receiving a dementia diagnosis at age 45, Mary Beth describes the first hurdle she encountered as no longer being identified as her own person or having her own voice. Those living with dementia must have their own voice in order for us to dismantle the societal stigma attached to it and to help meet their needs and the needs of their care partners. Elaine makes the point that very few other places in society let people speak on behalf of another adult. Only the people living with dementia can tell us what it’s like to live with dementia and what they need. They must be heard and they must be seen as right holders. For more information on The Mapping Project, please visit our website at: https://www.dementiadialogue.ca/mapping-the-dementia-journey.html |
|
Changing and Adapting: Be Prepared
Ron Posno is a retired educator living with mild cognitive impairment. He shares with us some of his experiences and talks about coming to terms with his condition and continuing to live a full life with many great examples and tips. Ron became aware of some cognitive struggles he was having and became worried. This led him to visit his doctor whereupon describing his concerns, she administered the Montreal Cognitive Assessment (MoCA) which he passed at that time. A year later, his struggles persisted so he insisted on a referral to a specialist where he received his diagnosis. This was a relief for Ron because his philosophy is to accept, adapt and plan. He stresses the importance of accepting a dementia diagnosis so that you can learn how to adapt and live happily, productively and purposefully. He directs others living with a diagnosis to find the people and organizations that are out there, eager to support them because support will be needed and to plan ahead while you are still able to. As he says, “When you see the clouds outside, you know the rain's going to fall so you carry the umbrella, don't you?” Ron urges people to talk about their dementia and to share their experiences as this will help eliminate the shame and stigma that can come with it. His positive and practical attitude in the face of his illness is very inspirational. In this episode, Ron talks about "Learning the Ropes" sessions for people living with mild cognitive impairment at the Alzheimer Society. More information on that program can be found here: https://alzheimer.ca/huroncounty/en/learning-ropes-living-mcir |
