Most diseases that humans experience—including the diseases that cause young onset dementia—bring changes to a person’s routines, schedules or activities.
One way to approach this is to focus on what is most meaningful for you. It’s also good to focus on what you can do right now, instead of what you can’t do.
For Mike, a Canadian with cognitive issues, his key in managing well is to “minimize, minimize, minimize” and strip away things that are less important now.
For Chrissy, a BC resident living with vascular dementia, her success comes in engaging a different, expanding sphere of busy activity—in her case, international dementia activism, advocacy and publishing.
Either way, living with young onset dementia can bring changes to managing day-to-day activities—while still living a full and enjoyable life. Here are some helpful tips for making that happen.
Use a calendar
Many people living with young onset dementia use calendars to stay organized.
They put all their tasks, appointments and events in a calendar.
They mark the time and location of these items in the calendar too.
Then, each morning, they make time to review the day’s schedule in their calendar.
And choose a calendar type that works best for you
Some people living with young onset dementia like to have their calendar on their computer, smartphone or smartwatch. And they sync their calendar across all their devices.
That way, when device notifications are turned on, you can get reminders of upcoming appointments before they happen. These can be for anything from family-birthday reminders to everyday chores.
“It’s also good for [many] kinds of reminders,” says Keith, who lives with young onset dementia in Ottawa. “Yesterday I was doing some concrete work in our basement, so I put in for today, as a Calendar event, 10 in the morning, second coat,”
“If I happen to forget, the [smart]watch is going to remind me. So I’m heavily for calendars.”
Some other people like to also sync their calendars to a smart speaker like a Google Mini or Amazon Echo.
That way, wherever they are at home during the day, they can access their calendar with a voice request.
Some other people with young onset dementia like to use paper calendars and whiteboards. They then review these daily with their family, friends or care partners.
“At home, I have the calendar and I have a whiteboard where I do a weekly overview,” says Moe in Winnipeg. Her husband Vern lives with young onset dementia. “[On a trip] I cross off every day. And in the morning when I get up, I get up before him, circle the day that we're at, because the days blend.”
Choose whatever calendar format works best for you.
Create communication tools that keep you on track
Different kinds of dementia change different kinds of brain tasks in different people.
For instance, Wendy, who lives in BC with young onset Alzheimer’s disease, finds that she has problems remembering where things are in her home.
Wendy can remember stories or actions well. But it’s the relationship of one object to another in space—like where she put her phone, or where she put her coffee mug—that can be hard for her to recall.
It can also sometimes be hard for Wendy to remember where her husband, Steve, is in her home or yard.
So Wendy and Steve came up with a reminder tool that worked for them.
“I have sticky notes on the fridge. I just bring them out, reuse the same note and put it on the stove with a magnet,” Steve explains. “I've got one that says, ‘Go on outside.’ Because I'll be out there…. you take it for granted that you've just discussed it 15 minutes ago that it's going to stay there [in the brain], and it doesn't.”
Set up a routine
When Mike found out he had thinking and brain issues, he decided to take a leave from his job.
After starting the leave, Mike found there were many hours in the day and week that he wasn’t sure what to do with.
A member of Mike’s medical team then worked with him on putting together a regular weekly schedule. Mike finds that this routine has helped him a lot.
“We made a seven-day schedule,” Mike says. “Then I was able to sit down and adapt the schedule so that there are certain core elements: Here's what I'm doing at nine o'clock in the morning. Here's what I'm doing at ten o'clock in the morning. And between eleven and one, I might be doing this or this because amongst other things, I write and I’m working on [a writing project].”
“So I have time booked seven days a week for writing of some sort--either I was working on my [project], or I was working on my next book or my next story,” Mike says.
Include things in your daily routine that you enjoy
Routines can be especially helpful when they include activities that you also enjoy. A lot of people find value in continuing activities that they enjoyed before their diagnosis.
“I have a really big backyard and I made a garden this season,” says Sophie, a person with young onset dementia in Eastern Canada. “It gave me focus. I love being outside. It’s rewarding to see things grow. Now I’m planning [next year’s] garden.”
“I read a lot. I have always enjoyed reading. It was something that I was brought up with in my family when I was younger,” says Janice, who also lives with young onset dementia in Ontario. “And I’m 5 minutes from the library, so if I want to research something, I trot on over.”
And be flexible in that routine when you need to
Because dementia symptoms can fluctuate day to day, it’s also important to adjust activities and routines as needed.
“I’m hoping to cross country ski again,” says Sophie. “But I won’t do it alone—maybe in my big backyard or down the sidewalks.”
She adds: “Photography is a big hobby of mine. I was struggling with using my camera, but that’s come back a bit. I have a 35mm camera with lenses, and I rely a lot on my settings.”
When Sophie can’t remember to how to adjust her camera’s aperture, she adapts: “I would just use my iPhone, because it was easier.”
And she also accepts when things take more time now with a larger camera: “I try to take on things that are a bit difficult for me and try to work at it.”
Also make sure your routine reflects your energy patterns
Some people living with young onset dementia have observed that it’s important to recognize you may not have as much energy as you had in the past. This includes both physical energy and mental energy.
If you experience those energy changes regularly, then you may want to plan to do more during your energetic periods of the day. And then you can plan to rest during the other periods of the day.
Wendy, who lives with young onset Alzheimer's disease in BC, books time for a nap after lunch every day. This helps keep her energy up for activities in the morning, later afternoon and evening.
Get to know your own “warning signs”—and adjust activity accordingly
Mike was having challenges seeing out of one eye and decided to talk to his doctor about this. He discovered that his eye problem was connected to young onset dementia.
Now, one of the ways he lives well and manages daily activities is by paying attention to the way his affected eye feels.
If his eye and vision is feeling worse one afternoon, for instance, Mike knows that his brain will also be not working very well that afternoon. And he adjusts his plans accordingly.
“We have a system. And the system, for me, is that I recognize a symptom,” Mike says. “If I lose my peripheral vision, or if that gets hazy, I shut down [what I’m doing]. Because I no longer have control. There's something that's creeping in, like fog…. That’s the early warning sign for me.”
“One day it suddenly struck me. When I looked out of the corner of my eye, I saw haze,” Mike explains further. “And that light-headedness comes and goes, but when it's there, I'm not very functional. I can follow through with basic activities. I can get the garbage to the curb without screwing up. But when I'm lightheaded, I don't embark on the adventure of driving for any distance. I shut that down. And it’s not the best time to be revising my [writing project].”
Know that joining a group focused on young onset dementia can provide regular social contact and support
Some Alzheimer Society chapters have support groups and programs specifically for people living with young onset dementia.
Those support groups can be a great place to share insights about ways to cope day-to-day with young onset dementia.
“I think we are more open there than we are sometimes with our friends and family,” says Sophie of the program they attend.
“I think for anyone getting diagnosed there is a stigma to it,” Sophie explains. “Suddenly you don’t know what your future is going to be. So there is stress there. But when all of us are together at [the activity program] we seem to forget about that. There is no judgment. We can all giggle at what silly things we did that week.”
Group events and meetings like these—or on an Alzheimer Society advisory council—can also be part of a helpful daily, weekly or monthly routine.
Groups and programs attuned to disease-specific experience are also coordinated through the Huntington Society of Canada, Parkinson Canada, the Association for Frontotemporal Degeneration and other societies.
Regular virtual support groups are also available most days of the week through Dementia Alliance International.
Make physical activity and healthy eating part of your routine too
Many people with young onset dementia report feeling better when they exercise at least a bit each day.
Some people prefer to exercise outdoors, be it with walking, gardening, running or disc golf.
Others like to hit the gym with a buddy. Or do some dancing at home or in a studio. Chair fitness routines on YouTube can also be an option that works for some.
Eating healthy foods that you enjoy is another part of living well with dementia. The Canada Food Guide has some great general suggestions including recipes, tips, reminders to make meals enjoyable and resources in multiple languages.
If you have issues preparing food due to impacts of dementia, your local Alzheimer Society can help you connect with Meals on Wheels and other solutions for healthy eating.
Connect with your local Alzheimer Society
Your local Alzheimer Society is here to help you set up day-to-day management tools that work for you.
The Alzheimer Society runs programs for people with dementia in general that can also be helpful for adding activity and structure to your day.
Find your local Alzheimer Society and its programs at alzheimer.ca/find.
Or email or call our national information and referrals line at [email protected] or 1-855-705-4636. Staff on the line will make sure to connect you ASAP with experts in your area.