Four pieces of advice on finding your purpose and living a fulfilling life after a dementia diagnosis from writer, advocate, and international speaker Laurie Scherrer.
When Laurie Scherrer, a 55-year-oldthen “workaholic” sales executive, was diagnosed with early onset Alzheimer’s and frontotemporal dementia at age 55, she recalls feeling like the doctor had told her to “go home and die.” Yet, years later, after the initial shock faded, she began to focus her energy on building community and educating others, sharing her journey through her advocacy work and on a tell-all blog about living a fulfilling life after a dementia diagnosis — so others wouldn’t have to go through what she did.
“When you’re diagnosed with dementia, you get nothing, not even one piece of literature,” she told Being Patient’s EIC Deborah Kan in a recent live talk.
Scherrer set out to change that lack of information with the launch of her blog, Dementia Daze. Sharing her journey to help others with dementia, she writes about her feelings, challenges, symptoms, and experiences in every post. In her work on the blog and as an international speaker, she encourages people living with dementia and care partners to explore ways to live beyond dementia.
Scherrer is a Dementia Action Alliance Board of Directors member and has been featured in The New York Times, AARP, PBC, and the South Africa Sunday Times.
Here are four ways she recommends living well with dementia, from her conversation with Being Patient.
1. Focus on your abilities, not your inabilities
When facing a dementia diagnosis, it can be hard not to focus on everything you’ve lost. While Scherrer recalls crying for an hour with her husband in their car after her diagnosis and going through periods of grief, she realized that she needed to focus on what she could do every day.
One day she said to herself, “You’ve never lived this way, and you’re not going to, and I just decided to start living my life the best I could every single day.” Part of choosing to live her best life was accepting what she could do and not focusing so much on what she couldn’t.
Scherrer explained, “It’s really easy to concentrate on the things you can’t do, but that’s just gonna pull you down.” Instead, she noted, “Concentrate only on and be grateful for the things you still can do because that’s going to give you the joy of living with dementia rather than dying.” Maintaining a positive attitude about what you can do will help you navigate the everyday stresses of living with dementia.
2. To deal with “bad days,” learn your triggers and find things you love
As people living with dementia and caregivers are well aware, there are good days and bad days. One bad day or one wrong moment from changes in mood doesn’t mean the whole day is lost.
It’s “much like a rollercoaster,” Scherrer said of day-to-day life with dementia. “It’s not a straight line down or straight line across. You have days like today. I want to get out in my garden, pull some weeds, and do stuff because it’s just a great day for me today. But [this time] last week wasn’t such a good day. You have to accept the bad days and work through them.”
That’s why Scherrer recommends finding strategies to help cope with the bad days. Whether going out for a run, listening to music, or finding other accommodations, developing that framework is helpful.
Scherrer also learned to recognize her triggers. “I know that noise bothers me very much,” she said. “When I go into a restaurant: earplugs — don’t leave home without them. I can’t handle multiple conversations. That’s part of learning the strategies. Learn what triggers your dementia symptoms and how to deal with them.”
Learning your triggers will help you handle bad days better and navigate how to deal with your symptoms.
3. Get involved in the community — talk to other people in your community living with dementia
Beyond focusing on your abilities and your triggers, finding a community can make all the difference. Social interaction is tied to better cognition and life satisfaction, especially for people with Alzheimer’s. Regularly working with the Dementia Action Alliance, Scherrer is a big believer in getting involved with other people living with dementia. She explained that anyone diagnosed should “get involved with people living with dementia. You will learn more from other people living the life than from any doctor.”
With organizations like the Dementia Action Alliance, there are often chat groups, get-togethers, and events that can help people connect and share important knowledge. Scherrer is particularly passionate about the organization’s Pathways To Well-Being With Dementia: Manual Of Help, Hope And Inspiration. Written by people living with dementia, care partners, care professionals, and doctors, she explained, “It’s the best resource guide that I’ve ever seen. Get a copy of it. You can download it for free.”
By sharing resources and making friends on your journey, whether with an organization or in a Facebook group, you can have more partners and knowledge.
4. Find your purpose — every single day
Learning new things, getting outside when possible, exercising — all of these can be key to living better with dementia. Whatever it is you love doing, whatever it is that drives you, Scherrer’s most important recommendation is to find your purpose, hang onto it, and live it as much as you can. “There’s no reason to get out of bed if you don’t have a purpose,” she said. “Every day has to have a purpose.”
In particular, Scherrer recommends staying active and going outside. “There’s nothing like when you’re having a really bad day, when you’re really confused, and you want to cry, scream and punch somebody—go outside and smell the fresh air. Look around and see all the beauty around you,” she said.
“Living with dementia doesn’t define me,” she added, “I’m a writer, I’m a scuba diver. I’m a wife. That’s part of who I am. Yes, I also have dementia, but I’m many other things as well.”
Katy Koop is a writer and theater artist based in Raleigh, NC.