Learning along the way
Pleeeeze... just give me the facts!
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Caring for someone with dementia often feels like a bizarre journey into the unknown. Too many times I found myself surprised, second guessing my decisions, and looking desperately for resources to help me understand what was happening to my parents and myself. I needed to know what was happening, what was going to happen next, and how I could best prepare myself and my family.
Below are links to resources I found useful. I'm still learning so will continue to add new content that I hope helps you spend less time searching for info and more time with your DementiaLove.
Podcasts, websites and publications
Lying for Love - Episode 16 of Defy Dementia
Podcast from
Baycrest Centre's
Defy Dementia
As dementia progresses, individuals may forget pivotal moments, like the death of a loved one. Repeatedly learning this painful truth can cause significant emotional distress, but caregivers may also feel guilt at the thought of lying. Jay Ingram and Dr. Allison Sekuler speak with Catherine Mulvale about the ethics and benefits of compassionately reshaping the truth when communicating with her mother and Registered Nurse Ben Hartung offers insights from his research on “ethical lies” in dementia care. Tune in for an insightful discussion and practical tips to provide comfort while managing the complexities of dementia care. Listen Now
Hope for the Best. Plan for the Rest
Podcast from
McGill Cares Dementia
Education Program
Dr. Hsien Seow (Canada Research Chair in Palliative Care and Health System Innovation and Professor iat McMaster University) and Dr. Sammy Winemaker (Associate Clinical Professor, Department of Family Medicine, at McMaster University) discuss creating a strategy for navigating a life-changing diagnosis like dementia. They discuss their book that aims to help families have a better illness experience. They present seven keys and how they apply to a diagnosis of dementia. Listen Now
You're making the decisions now - legal implications, psychosocial and medical assessments
Podcast from the
McGill Dementia
Education Program
Deciding when and how to start making decisions for a person you love can be extremely difficult. It's emotionally painful, can present challenges on many fronts, and changes relationships. This webcast aims to provide clarity on the assessments and legal documentation required to make decisions on behalf of a person who is no longer able to make important decisions for themselves. Listen Now
Defy Dementia - keeping your brain healthy and reducing your risk of developing dementia
Podcast from
Baycrest Academy for Research and Education
Join Jay Ingram and Dr. Allison Sekuler on a captivating exploration of key dementia risk factors through interviews with experts and inspiring stories from persons with lived experience. Defy Dementia shares practical advice to help you optimize your aging journey. Each episode is complemented by a short video, infographic, and related resources to help you take control of your brain health. Listen Now
Dementia, Your Companion Guide - FREE resource
Podcast from the
McGill Dementia
Education Program
A diagnosis of dementia brings about endless questions. What changes can I expect to my daily life? How long can I remain independent? How will this affect my relationships? McGill Cares has created the incredible and comprehensive Dementia Companion Guide for those living with the disease and their caregivers. Designed to help provide answers, the guide features engaging illustrations and a friendly writing style. It includes information on the science and progression of dementia as well as practical advice on safety and self-care for day-to-day living. Read Now
Patient Voice - exploring the pain and moments of beauty when caring for a parent with dementia
Article about the
founder of
DementiaLove.org
Catherine Mulvale shares her honest account of what it's like to care for a parent with dementia. "There are so many daily issues that are difficult when caring for someone living with dementia. So much of my life now revolves around helping Mom navigate a world that’s unfamiliar to her. It’s tough when her memory can’t be trusted, her emotions are erratic, and I feel her dignity needs to be protected." Read Catherine's Story Now
What happens to my memory as I age?
Podcast from
CBC's The Dose with
Dr. Brian Goldman
Most of us assume that our memories get worse as we grow older, but it's not as simple as that. Professor Natasha Rajah helps explain why some of our memories often remain just as strong in old age as when we're younger, as well as how changes in our brain as we get older influence our ability to retain and retrieve information. Listen Now
Frailty and Dementia
Podcast from
The Waiting Room Revolution
The Waiting Room Revolution speaks with McMaster University geriatrician, Dr. Sabina Keen, to talk about frailty and dementia. The discussion, which focuses on what patients and families need to know as they make their way along the journey, is navigated from the perspective of a health expert. Listen Now