“ I have Alzheimer’s disease, it doesn’t have me ”. Words of Wisdom From People Living With Dementia: A Secondary Qualitative Analysis

Receiving a diagnosis of dementia can be an unsettling experience, often complicated by a lack of hope when seeking resources and support. While clinical guidance is important, peer-to-peer knowledge shared among people living with dementia can provide meaningful insight into ways to support one’s well-being. The Wisdom Series was a three-part webinar series designed and offered by people living with dementia for people living with dementia. Led by a dementia advocate who lives with dementia, the series provided a platform for 17 individuals living with dementia across Canada to share their experiences and strategies for living well with dementia with others. A secondary qualitative data analysis was conducted with transcripts of the Wisdom Series webinars to understand participants’ perspectives on well-being. Using thematic analysis, six themes were identified: (1) Knowing Yourself: Recognizing Abilities and Limits, highlighting the importance of adaptation and self-awareness; (2) Connecting with Meaningful Supports, focusing on relationships with peers, family, and animals; (3) Keeping your Mind and Body Nourished and Active, emphasizing cognitive, physical, and holistic approaches to health; (4) Finding Joy in Nature, illustrating emotional benefits of engaging with the natural environment; (5) Supporting Self and Others through Advocacy, describing participants’ efforts to improve accessibility and awareness in their communities; and (6) Planning for the Future, encompassing advance care planning, medical assistance in dying, autonomy, and burden. In sharing their experiences and perspectives, the webinar panellists not only shared their wisdom but challenged deficit-based assumptions about dementia by demonstrating the agency, citizenship, and personhood of people living with dementia.