How some people with young onset dementia—and their networks—use tech to improve daily life

People living with young onset dementia have many more helpful tools today than in past decades. Particularly digital tools embedded in smartphones, tablets and other tech devices.

In the 1990s, a person living with primary progressive aphasia—which makes speaking and writing harder—would have had a large, heavy binder of pictures as a communication tool.

Today, people with a similar diagnosis can use a number of smartphone apps that put the same communication tools, and more, in a person’s hand. And there are even more apps in development for it every year.

People living with young onset dementia in their 30s, 40s or 50s today have also used computers since teenagehood or early adulthood. This makes digital tools even more helpful to them—and to their family and care partners, too.

Keith Barrett, who lives with young onset dementia in Ottawa, is a big fan of tech tools. One thing he does is use a digital calendar for his to-do’s, appointments and birthdays. These are then networked into his smartwatch, smartphone, laptop and smart speakers.

“I got caught with my doctor a few times when he asked, ‘How are things going?’” Keith explains. “‘Well, I'm doing fine.’ I said. Then he asked, ‘Are you forgetting things?’ And I said, ‘Well, when you have all these [tech] tools on the side, no I’m not, because I’m being prompted!’”

Here are a few things to consider when using and choosing the tech that will help you live well with young onset dementia.

Know that there are no one-size-fits-all tech solutions for young onset dementia

One meaning of the word “technology” can be “the use of science in solving problems.”

And whatever helps solve your particular challenges in a way that works for you—whether it’s electronic or not—will be the right “tech” for you in that moment.

The right tech will be the one that works for you and your own circumstances, even if it’s a whiteboard and a paper notebook.

Start with the equipment you already have

Dementia and caregiving advocate Ron Beleno is a Toronto innovator and researcher on a variety of tech projects and teams.

He puts forward a hopeful, inspiring model of using tech and other solutions in the dementia space.

“We’re all playing a similar game, with similar challenges,” Ron says. “And the game is against the challenges that come with different kinds of dementia.”

Ron’s dad Rey was diagnosed with Alzheimer’s disease in 2007. But his family recognizes that Rey already showed strong signs of dementia a few years earlier, when he was around 63 years old.

Ron started out using some of the tech tools he already had—like an iPhone 3 and a spare security camera—to help them stay connected while keeping Rey safe at home.

Later, as his family's needs changed, Ron invested in some new tech tools, such as a GPS device to keep his father safe while he continued being out in the community.

Delve into the accessibility features that come with the smartphone you own now

Any kind of smartphone usually offers accessibility features.

On Apple devices, for instance, there are options for magnifiers, larger text, zoom and other vision features. There are also cognitive features that can reduce visual clutter on webpages; these can also speak what you are reading or writing. Mobility features on those devices include voice control and assistive touch, among others.

On Android devices, there are many similar options, too. Screen readers, hearing-aid support, voice access, and magnification are just a few of the tools available. So are live transcribe, selective sound amplification, and increasing font size and display size.

Use the apps that are already on your phone to support your dementia care

Some people living with young onset dementia use a notes app to track symptoms or keep a journal. This can then be shown to a doctor or other healthcare worker during diagnosis or checkups.

Other people use notes apps to keep organized lists of what they need from different stores. Then when they are at the store, they can just check their list to see what they need there.

John McCaffery, who lives with young onset dementia in Calgary, also uses many apps that people without dementia use: Google Maps for directions, AnyList for shopping lists shared with his wife, and a password manager for passwords.

Spotify and other sound apps are things John uses in a specific way to support his dementia needs.

“If I’m having a busy day, and this has happened before, where I look at [my wife] Cindy I say, ‘Okay, I have to take 20 minutes, just chillax for a little bit,’ when I'm getting cognitively fatigued… I’ll put on the sounds of various kinds of rainstorms or thunderstorms,” John says. “And then I'll just make a point of listening and not thinking for about 20 minutes. Just laying down. And it works really, really well.”

John adds: “I find music helps me a lot. I think I get edgy when things are quiet, so I think music [in the background] is an a very important part of how I manage dementia. Like when [a friend with young onset dementia] was telling me he is having trouble sleeping because his brain is moving so fast, I said ‘Well instead of trying to go to sleep, just try to listen to music, and at least the brain is relaxing if you're not asleep.’”

If written or spoken language is a challenge, stay in touch with smartphone photos and messages

Some forms of young onset dementia make it harder to speak, hear and converse.

Other times, issues with spoken language will emerge because of the way a particular disease affects the language portion of the brain.

But one helpful thing about smartphones is they provide ways to “chat” that go beyond spoken and written language.

Doug Vaughan, who lives in Qualicum Beach, BC, loves staying in touch daily with friends and family. He does this through group chats and individual emails—all done visually through his smartphone.

Doug’s smartphone camera is also a big part of this communication strategy. While on his daily walks and hikes, he takes landscape and nature photos with his phone. Then, he shares those photos with family, friends and other contacts via email and messaging apps.

“On Messenger, I’ve got my family and our cousins,” Doug explains.

In this way, Doug’s important connections remain tended to and updated.

Be aware that you don’t need break your budget to get more devices

On a limited budget for tech? There are still ways to move forward.

“Some other options would be to consider possible tech hand-me-downs from family or friends who have recently upgraded to newer devices and equipment,” says Ron Beleno.

“Many times you don't need the newest and best tech tool to get the job done, and to support a person with dementia or their caregivers,” Ron adds.

Some non-profit organizations, like the Dementia Society of Ottawa and Renfrew County, even have technology lending programs.

You can also test out a product before committing.

“Any technology has to be tried and experienced before you can see the value,” Ron observes. “If you are on the fence or hemming and hawing about a technology, one solution is to try it out—because there are return policies with most retailers.”

You can often trial an app for a free or low-cost period, too. (Just put reminder in your calendar about when the trial expires.)

“Consider tools and technology as investments to address your challenges in life,” Beleno says. Then try it out and see if it can become part of your daily routine and habits.

A popular tip: put all your appointments and tasks on a digital calendar

In October and November 2021, the Alzheimer Society of Canada spoke to several people living with young onset dementia about how they managed their daily lives.

One of the primary tools many of them said they used was a digital calendar—like Google Calendar, Apple Calendar, Microsoft Calendar or similar.

Most of these calendars are free or low-cost, and easy to test out.

If you do have a digital calendar, make sure turn on your calendar reminders

Several people who are living with young onset dementia told us they really appreciated the automatic reminders that you can turn on with digital calendars.

For some people with thinking problems or memory issues, those reminders can be a game-changer.

“All of my [family] birthdays are in the calendar, and they are all set to remind me one week in advance and one day in advance, in essence, so I don’t forget birthdays,” says Keith Barrett in Ottawa.

“I also don’t forget appointments, because it’s on my computer and it’s on my Apple iPhone and it also links to my Apple Watch,” Keith says. “So if I don’t have my phone on, I will still get the notification on my watch.”

Think about whether audio or smart-speaker reminders could be useful too

Occasionally, people living with young onset dementia have told us they also like to have a smart speaker—like Google Nest Mini, Amazon Echo Dot or Apple HomePod Mini—networked into their systems.

When those smart speakers are properly networked into your calendar, all you have to do is ask your virtual assistant (like Alexa, Google or Siri) when your next appointments are, and it will tell you.

This is a process that works well for Kathleen, who lives with young onset Alzheimer’s disease and vascular dementia in Ontario.

“I have a Google Mini and I say, ‘What’s on my calendar for today?’ And it will answer me,” says Kathleen. “I also have a calendar on my computer and every night before bed I look at and go, ‘Oh yeah, I’ve got that tomorrow and that tomorrow.’”

The human element can still count, though, Kathleen jokes: “And I’ve got a good husband who will say, ‘Don’t forget you got this!’”

Consider the range of new “tag” tech that can help you keep track of easily misplaced items

Some people living with young onset dementia can have challenges finding things in three-dimensional space.

Add this to the usual trouble that even non-neurocognitively-challenged folks have in finding keys, phones and wallets, and much frustration can emerge.

For some, a solution lies in using contemporary tracking devices—such as Tile, Samsung Galaxy SmartTag, Chipolo or Apple AirTag.

Keith Barrett, who lives with young onset dementia in Ottawa, uses the Tile on his keys, phone and wallet.

“Very frequently I will misplace my keys or I can't find my phone, or vice versa, and on Tile you just have to hold down the center button and it will ring. I use it to find both those things,” says Keith. “And when I was working, I had some different keys that I would use for work. I also had Tiles on those as well.”

Apps like Find My Phone, Google Find My Device or Find My iPhone can sometimes do the trick as well, depending on your needs.

Some apps can also help you stay geographically oriented and connected, too

Apps like Find My Phone, Google Find My Device or Find My iPhone will also let you share your location with family and friends, if you want.

For instance, Keith Barrett in Ottawa shares his Find My location with his wife so that she can always find out where he is at home or in the community.

Keith says this provides his wife with a sense of comfort while maintaining his independence.

Map apps such as Google Maps, OpenStreetMap, OsmAnd or Apple Maps can also come in handy. You can use these apps to help you find your way back home if you become disoriented.

Leverage a fitness app, sleep app and/or wearable fitness monitor to track some brain-healthy habits

For some people living with young onset dementia, using a fitness app, sleep app and/or wearable fitness monitor—like a Fitbit, Garmin Vivofit, Apple Watch or Samsung Galaxy Fit 2—can be motivating in keeping up brain-healthy habits.

Doug Vaughan of Qualicum Beach, BC, uses his for several things: to track his steps each day, to track his heart rate, and to track his sleep.

“I have a Fitbit. I do 20,000 steps a day,” says Doug. Many days for him that means a “two-and-a-half, three-hour walk.”

And because the Fitbit links to Doug’s phone screen, he can visually show others—and himself—just how well he is taking care of his health.

The app also tracks these factors in ways his doctors and health care workers can see, in case they have any questions about it.

Watch for symptom-specific tech and apps that support your particular needs—or sign on to test ones in development

We mentioned in the introduction to this article that there are specific apps that exist—and that are being developed—for syndromes like aphasia that affect some people with young onset dementia.

Likewise, there are other apps out there designed to help people living with dementia. A Swallow Prompt app, for instance, is helpful to many people with certain Parkinson’s disease symptoms. Ray, a person living with Parkinson’s disease, tells Parkinson’s UK that "By setting the app up with headphones and using the volume controls on my phone, or with my phone in my pocket and just a vibrate switched on, it really does serve as a reminder to swallow.”

You can even be part of designing better tech for everyone with young onset dementia and/or your particular symptoms. Just sign up to help with a tech trial or research study!

For example, Paul Lea of Toronto, who was diagnosed young onset vascular dementia in his 50s, recently helped test a new scheduling app called MAXMinder.

The input Paul provided on the app during testing “included suggesting a way for users to edit their entries,” says an article in AGE-WELL News.

“I am still using it [MAXMinder] now,” says Paul on Twitter months after the test. “I’ve added some new meds and now I don’t have to worry about forgetting because I get the notification to take my meds.”

For more information and guidance, connect with your local Alzheimer Society

Your local Alzheimer Society experts can put you in touch with tech-savvy area volunteers and expert advice.

They can also help you find solutions that go beyond the tech realm and can help you live better with dementia 365 days a year.

Find your local Alzheimer Society’s contact info at alzheimer.ca/find. Or reach our national information and referrals team at 1-855-705-4636 and info@alzheimer.ca to get connected.

Disclaimer: This article is for information purposes only. The Alzheimer Society of Canada does not endorse nor recommend any of the manufacturers/products mentioned in this report. It is important to remember that no one product or strategy can guarantee the safety of a person with dementia. Individuals are encouraged to speak with staff at their local Alzheimer Society to learn about the multiple ways to assist a person with dementia to live as safely as possible.