Roger Marple shares personal tips for living well after receiving a dementia diagnosis
When Roger Marple was diagnosed with Alzheimer’s with vascular components at 57 years old, he was nervous about how others would perceive him. He felt ashamed and isolated himself. But, after experiencing frustrating encounters, such as being told hurtful dementia jokes and seeing a stranger at the grocery store checkout tell the cashier they were “having an Alzheimer’s moment” while mimicking a seizure, Marple had had enough. For him, these encounters highlighted how many people believed dementia myths that perpetuated stigma. So, the Medicine Hat local decided to speak up.
For the last five years, Marple has been an advocate for living as well as possible. A big supporter of dementia research, he’s on the board of directors for the Alzheimer Society of Alberta and Northwest Territories and sits on the national advisory board for the Alzheimer Society of Canada. He’s also active on Twitter, where he connects with research groups, organizations and communities working to improve life for people living with dementia.
Marple lives a full, busy life and inspires others not to isolate themselves or feel shame after a dementia diagnosis. Here, he shares insights and practical advice on how he lives life well.
Q | What’s the first thing you recommend someone do after receiving a dementia diagnosis?
A | Getting a dementia diagnosis can feel very confusing, so I recommend people connect to First Link. It’s a national program that helps individuals right after diagnosis connect with their Alzheimer Society to find support, learn about various services and get answers to any dementia-related questions. I also really like Dementia Advocacy Canada — it’s bringing the dementia community together to speak openly and work towards common goals.
Q | Do you think that individuals should talk about their diagnosis?
A | Definitely. I’ve learned through experience that it’s good to be open about your diagnosis rather than trying to hide it. Because I’m open, I’ve had people ask me questions about living with dementia. The conversation usually starts out with grief, but if I see a window, I’ll change that conversation to a practical one. There are other times that I will just listen. Sometimes people need to vent. I’m okay with that and totallyunderstand. It’s led to some really positive and hope-filled interactions.
Q | Why do you feel that it’s important to speak openly?
A | If we are going to achieve better funding for research and fight dementia stigma, it’s going to be done by the voice of the many. The more we speak, the more positive change we’ll see in a more expediated way. There are practical advantages, too. People that know
I have dementia want to help me. For example,I frequent a restaurant and a waitress there knows I have dementia. When I leave, she scans my table to make sure I haven’t forgotten anything. That kind of support makes your life easier.
Q | What can individuals do after a diagnosis to feel empowered?
A | Accept no one’s preconceived definition of who you are living with dementia. Define yourself and what makes you who you are, [including] your hobbies, your interests and your relationships. I tend not to think about the challenges or how things will look down the road, and instead, focus on day-to-day life.
I get involved in different things that have deep meaning for me — and I am busier now than when I was working! Keeping myself busy is important for me towards keeping my mind engaged in my day-to-day life.
Q | What tips do you often share to help others live well with dementia?
A | I helped the Alzheimer Society of Canada put together an information sheet with a range of practical memory aids, tools and day-to-day strategies. I use a combination of strategies and recommend people cherry-pick strategies that are relevant to them. For example, I’ve found the most powerful memory technique for me is visual: I hang my backpack on the door to remember it when leaving the house or I leave my laundry hamper in the middle of the living room so I won’t forget to do my laundry. I also use technology and write notes for myself.
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Living Well with Dementia: Three Practical Tips
Google Home is a voice-activated smart speaker. Marple tells Google Home to make note of important meetings or errands he needs to remember. Then each morning, the device provides a summary of the reminders relevant for the upcoming day.
Marple puts this tiny Bluetooth tracker on items like his keys or in his bag. That way, he can track the item’s location using the Tile app on his phone if he happens to misplace it.
Marple writes reminder notes for himself on whiteboards and Post-it notes, but says erasing a note is just as important as writing it down. For example, he throws away a grocery list after the items have been purchased to avoid buying the same items again. [ ]
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