Nuts & Bolts of Living Well with Dementia

What is it like to live with dementia? Well, challenges have become more pronounced and I do feel the condition marching on. I would describe it as relentless, if I could put it into one word. Not that I’m living in a world of despair and sadness, but there are times when something will happen and it’s worse than the norm and it might shake you up. I always, you know, dust it off, and having recomposed myself I move on. I recognize what I can do, not what I can’t do and I’m still doing many good things. I’m giving talks, I’m doing Zoom meetings and inspiring hope and sharing practical tips, all of these wonderful things. I never lose sight of that.

Here’s the thing, we all live with the terminal condition called life. Right? And I look at people with dementia and families who live with this condition and often they’re living in a sea of despair and sadness and darkness. And, and I do get that when we’re entering the most challenging stages of our life. I’m not downplaying that, but that’s a horse that we’ve whipped to death, you know, end of life discussions. 80% of the people that are diagnosed with dementia live in communities across Canada. We’re not dead yet, we live with a terminal condition called life. We just want the best quality of life we can get for as long as we can get it.

What advice would you give others facing dementia about how to live well?

I’ll start off with the big four: attitude, diet exercise, and engaging our minds. The attitude part is super important.

Then, put some tools into place to address the challenges dementia brings. The problem is practical information super fragmented and there’s a lot of technology out there that really help people. Like my Achilles’ heel is memory, that’s the challenge that I personally experienced the most. So, I put a number of tools into place to help me with my memory. And I often think that if more people with dementia actually use these tools, it would take a lot of pressure off care partners, and would allow everyone to be more independent. I live alone, and don’t have the luxury of someone helping me out, so that has been a blessing in disguise.

How might a person with dementia use technology to live well and increase feelings of joy, meaning, growth, security, autonomy, identity and connectedness? 

It’s a myth that older adults are technophobic.

• Google Home in every room – I use this more than any other piece of technology, for appointment and medication reminders, telephone numbers, what’s that word?, spelling support, reinforcing helpful routines, safety reminders – get that roast out now!  Any kind of memory app, it’s got to come to me, not me going into it. I need that, whatever it is to proactively say “Yoo-hoo, Roger. Reminder for you”.
• Tiles to locate every important item – I have a tile in my wallet. If I leave my wallet on a counter somewhere, I can find it.  I have them attached to my keys.  I’ve lost my carry-on bag in airports, so now I have a tile in there too.
• Life 360 to stay independent and safe – I’ve been lost a couple of times in a familiar place. Six out of 10 people living with dementia will experience this. It’s a big deal and it’s a serious safety issue. I asked my brother for him to download it and he keeps an eye on me, he lives 3000 miles away.
• Connect online – One of my best friends moved to the Philippines and built a house by the ocean. He’s living a cool life and we connect through Facebook messenger, face to face and we talk about whatever.
• Ask others living with dementia about what helps – A friend of mine was watching me peck at my phone to answer a text and said “just use the microphone”. And I go, what microphone? Here’s one guy with dementia telling another guy with dementia about technology. I loved it.
• Technology can be used for fun, too – I’m a big Twitter guy. I love Twitter and I’ll often have a moment where, Oh, I feel a Twitter moment coming on. When I get a meaningful reaction it is cool, I said something that resonated with Canada. I get a lot of satisfaction out of that and Facebook.
• Try low tech too
  • Visual cues – Leave your medications on a counter where you see it because you always make coffee in the morning.
  • Associations – Sometimes I put my laundry hamper in the living room. So even if you’re procrastinating, which I do, you cannot not do laundry just because you’re literally tripping over the hamper.
  • Help others help you – I promote the medic alert bracelet provided in conjunction with our Alzheimer Society. If I ever in a pickle and I get lost and I’m really scrambled, someone would notice the bracelet, flip it over and go, Oh, he has Alzheimer’s maybe I’ll give the number of call.
  • Create a list of important people in your life – List names, roles and contact information to maintain connections and reduce the frustration about remembering.

Final thoughts 

Using technology is also about taking some workload off people that support us, who live with this condition, as much as we are.

I have a friend in Nova Scotia, she told me the coolest story ever about a GPS app. So, lady has dementia, and she’s going home and it’s getting dusky out. And all of a sudden, she looks around and you know, and it’s very like, Oh my God. Where am I? But she had the common sense to call her daughter who lives here in medicine hat. She lives in Nova Scotia. She goes, hi honey, I’m trying to get home. And I don’t know where I am. Right. And, and, and her daughter goes no sweat. And she pulls up the app and she goes, you’re three blocks from home. Just that peace of mind that was brought through technology is quite emotional actually.