I had the honor of attending the Dementia Action Alliance Conference in Indianapolis last month. This was the 3rd conference the organization has held. I have not missed one yet. The conference was attended by professionals in the field of dementia, persons who are living with dementia and care partners of persons living with dementia. Some of the people who appeared on the conference stage were professionals, some were persons living with dementia and some were care partners. The people who were living with dementia on that stage have mastered LIVING WELL with dementia. I find it so inspiring and hopeful to see that possibility in action, over and over again.
Some takeaways from the conference follow. I hope they might be helpful, whether you are the care partner of a person living with dementia or simply a person who may be worried about developing dementia yourself:
The first speaker, Jacqueline Pogue, whose husband lived with dementia, spoke of the fact that “It’s not the brain that we need to be fully human. It’s the soul and the spirit beyond our brain. The person’s essential humanity is still there.”
One of the main messages of the conference was that PERSONS LIVING WITH DEMENTIA HAVE THE RIGHT TO HAVE HOPE. Unfortunately, physicians sometimes do not understand the impact of their word upon diagnosis of dementia, i.e., “go home, get your affairs in order, come back in 6 months”, which apparently still happens all too often.
There are many different causes of Alzheimer’s disease and there are strategies and interventions that can really help prevent and or manage that disease, as well as other forms of dementia, especially when started early. There are even some reports out there of people being able to reverse some symptoms. (See Dr. Dale E. Bredesen’s book, The End of Alzheimer’s.)
LIFESTYLE MATTERS. Doctors should be recommending the things that can make a difference for people.
EXERCISE is the single best thing we can do for our brains. We need to get our hearts pumping, and you don’t need to join a gym to do it. Brisk walking for 30 minutes is an excellent idea, as is using a stationary bike. Talk to your doctor if you are not sure what the safe options might be for you or your loved one. Vigorous chair exercises are possible too!
CHANGING EATING HABITS, for example, can have a big impact. Our guts manufacture chemicals which if we eat the right things, can allow the brain to resist disease. Eating well on a plant-centered, organic diet is recommended. Drinking plenty of water is important, reducing sugar, making sure our diet includes good fats with Omega 3’s that come with nuts, seeds, and certain fish. Alcohol is not the best idea – it turns into sugar in the body and that can work on the body like a poison.
Stress is major cause of inflammation in the body. If we reduce our stress, we have a better chance of preventing and/or managing dementia. Making sure that people who are living with mild cognitive impairment or dementia have ACCESS TO THEIR OWN MUSIC is a great idea. No matter where a person is in the progression of dementia, 30 minutes of listening to their music, perhaps with headphones, is highly recommended for joy and relaxation.
MAINTAINING A SENSE OF PURPOSE, MEANING AND ENGAGEMENT is critical. People need to stay involved in tasks they love and in caring for others. People need THE OPPORTUNITY TO MAKE A DIFFERENCE in the lives of others. Many who present at the Dementia Action Alliance conference and have been living for years with dementia travel a lot to spread these messages to various organizations and conferences. These people are making a true difference, fueled by the passion to defend their right to hope and to live well, in spite of the diagnosis and the inconveniences of their situation. They learn to focus on what they still CAN do, to take things in stride, to laugh, and to accept whatever disabilities come with the diagnosis. They move forward and live fully.
GETTING 7-8 HOURS OF SLEEP is a need for preventing and managing dementia. Sleep is “Mental Floss” for the brain, as one of the presenters said. Don’t drink coffee after noon if you want to increase your chances of getting good sleep.
LEARNING NEW THINGS is also an important prevention/management strategy. Complexity grows the brain! NEW INTERESTS can be developed. CREATIVE PURSUITS can be adapted.
STAYING SOCIALLY ENGAGED is also a strategy for managing and preventing dementia. We need to interact, to be social with others, for both our mental health and our brain health.
HUMOR is healing. Whatever you can do that will bring more humor into your life and the life of a person living with dementia is a very good idea.
Here’s some more advice, direct from some of the people who are living well with dementia to those anyone out there who is currently living with dementia or who might wonder and worry if that is in their future:
- “It’s the end of a chapter, not the end of your life. Don’t put the book away.”
- “Adapt to what you CAN still do.”
- “What helps? Diet, exercise, learning, staying positive. My granddaughters accepted me, I learned to be creative in other ways.”
- “I felt some relief with the diagnosis – there was a REASON I didn’t have recall. Another side of me flourished, I started doing photography and taking part in art shows.”
- “Be aware, there is opposition to living well with this disease.”
- “I had to become my own advocate. Go live life until you have more symptoms. Advocate. Don’t be afraid to fire your docs! Speak up!
- “Push for the care that fits for you.”
- “Be solution-focused. Think not about “problems” but about challenges.
Author and Academic Stephen Post lead the final conference session. He stressed that the “continuity of self” includes “smell, taste, mirth, emotions, intelligence, symbolic meaning, music, rhythm, creativity, beauty and spirituality.”
That, in my opinion, is a lot to work with in order to maintain a decent if not wonderful life!
Please check out the Dementia Action Alliance website for lots of helpful resources:
p.s. This is my last blog, as I will soon be retiring from my full-time role as Ebenezer’s Dimensions Program Coordinator very soon. I’m also turning 70. I will remain on as a “casual” Dementia Educator. Thanks to all who are reading this! It’s been a pleasure to be in this role, and to have the opportunity to write a blog about dementia care and the experiences and the people who have inspired me most in this arena. Rest assured I do not plan to put away my passion for excellence in dementia care, ever! All the best!
-Marysue Moses, Ebenezer Dimensions Program Coordinator, 10/24/2022