“My mantra in this whole thing is I have Alzheimer’s but it doesn't have me,” shares international Alzheimer’s advocate Brian LeBlanc. “I refuse to let it own me... I am not going to be able to overcome my disease, I know that, but I am trying to preserve as much life as I possibly can.” Brian is living a good life independently – and with Alzheimer’s. Let's explore how community, built environment, technology, and physical fitness were crucial to his success.
4 Areas that Can Promote Independence for Those Living with Alzheimer’s
“Once you get diagnosed, it is very important to put together a support team,” says Brian. “People you can absolutely count on. Have them check with you periodically to make sure you are okay. To make sure you do not need anything... The support system is key to living the best life that you can... Get those people and surround yourself with them.” Unfortunately, many people think the journey of dementia goes straight from diagnosis to end-stage. That is not the case, shares Brian. People live long and rewarding years post-diagnosis. When seeking out this support team, it is important that they will treat you as they always have.
Friends and family build the foundation of our community. Other social networks and professionals round out a community that will support us as we desire to live independently with Alzheimer’s. Here are some groups to consider when building your support community:
- Support groups - virtual and in-person.
- A network of Professionals - handyman, medical, home care, fitness, food delivery, housekeeping, administrative assistance etc.
- Community Groups - fitness classes, religious groups, art or craft classes etc.
The earlier you start building this community, the better. Too often we wait for a crisis to build support and at that point, it might be too late.
2. Built Environment
“If you are going to make a change, the sooner the better,” counsels Nichole Kain, an Environmental Gerontologist. Ideally, this would mean that when one is building a home, they are weaving the concepts of universal design into the home and community. The beauty of universal design is that while it meets the needs of the frailest among us, it suits people in any phase of life. Nicole shares that, “The best environments for people with cognitive decline are going to be environments and neighborhoods that are familiar to them.”
If you don't have the option to start from scratch, there are a lot of things you can do to make the home and community you live in more dementia inclusive. Here are some simple age-friendly home improvements you can make on your own:
- Add motion sensor lights on the route to the bathroom.
- Remove throw rugs and have all flooring be the same height.
- Consider an induction cooktop.
- Add an adjustable shower head.
- Change doorknobs to lever handles.
If possible, hire a universal design expert to help you do the remodel. They can make sure your home works for you and your future self and family. Many towns offer free in-home safety checks. Check with your physician or Area Agency on Aging to see what services are available in your area.
Many people living with (and without) dementia use technology as a form of cognitive prosthetics. Brian shared with me that he uses Amazon’s Alexa technology all of the time. It is great for reminders, answers to questions, music, and much more. He also uses his phone in a beautiful way. Brian shared, “I have a phone with me. When I am walking around and I see something pretty or I see something I really like, I take a picture of it. Then two or three days later, I’ll come across this picture and it is like I am seeing it for the first time. Sometimes I do not remember taking it, but I know I took it for a reason. And then you find a whole new meaning for that photo than you did when you first took it.”
Get creative and do what works for you. If you're looking for more technology to help people living with Alzheimer’s maintain their independence try:
- Electronic Medication Dispensers. Try a total wellness program like Pillo.
- Ride Sharing. Taking Lyft or Uber makes it easy to get around town.
- Food Delivery. Many grocery stores offer home delivery now and startups like GrubHub and Caviar deliver local food to your doorstep.
- Music Streaming. Use a platform like Spotify to create playlists of your favorite music for different moods.
- Protective Wearables. Devices like an airbag for your hips, such as those offered by Helite, can offer increased protection.
4. Your Body
The most common reason for not being able to live where and how we want is because of a fall and the resulting injury can occur. Laura Dean is a physical therapist who specializes in balance. She echoes many of the same ideas discussed in the environment section, “You can have the best balance in the world and still fall… setting up your environment for success is really huge.” Laura's advice for avoiding falls includes:
- Get footwear that fits and is non-slip.
- Be wary of slippers and socks.
- Practice moving in different directions.
- Practice taking different sized steps.
- Practice quick reactions in a safe space because falls happen fast.
- Take a fall practice class. This helps you overcome the fear of falling, as fear can actually increase your risk of a fall.
Getting in touch with a physical or occupational therapist can help you assess your own unique fall risks.
Staying Uniquely You
There is a lot we can do to make sure we can live independently for as long as possible, with or without dementia. The biggest thing is to start thinking about and preparing for the possibilities that come with aging today, no matter what your age or cognitive ability. Brian wisely ended our conversation saying, “I can tell you things all day long but you have to search for what will work for you.”