A Perspective for Thriving with Alzheimer’s Disease
As clinical trial after clinical trial for Alzheimer’s disease fails to produce effective treatments, it is easy to get discouraged. Never-the-less, we have learned an incredible amount about Alzheimer’s disease over the last decades and our ability to help people with this disease is growing. The popular conception of Alzheimer’s disease is bleak — a relentless decline into madness and indignity. I want my patients to know that they can do better than that. At the same time, some people are promoting magical cures and announcing the End of Alzheimer’s Disease. We aren’t going to do that either, this isn’t about false hope.
I have had the incredible opportunity to watch many people (both patients and caregivers) gracefully navigate Alzheimer’s disease and they have taught me that good planning, committed families, strong faith, unflappable optimism and a sense of humor make a major difference in the experience of this disease. I want to share the insights and strategies that these families found most useful. The list below is a rough draft which I fully intend to update, but I hope it is a good starting point for people who are just starting to cope with Alzheimer’s disease.
1. Denial is the enemy.
2. Beware of quick fixes and easy cures
There are sadly lots of people willing to take advantage. At the moment there are no cures for Alzheimer’s disease, anyone who tells you otherwise is selling something.
3. Stay active
It is particularly important to stay physically active, but also socially and mentally active. Get out of the house every single day.
4. Plan!
Most people’s biggest worries are 1) losing autonomy and 2) being a burden on their family. Good planning can prevent both. Don’t put off making a will and living will. Communicate how you feel about nursing homes, “tube feeding” and other forms of life support to your family (in writing) long before these issues become reality.
5. Work on the Bucket List.
The silver lining is this disease usually progresses slowly. Think seriously about what you want to accomplish with the time you have and go get it done.
6. Don’t become isolated!
Family, friends, church, and other social groups are really important. This is still important when you can’t drive.
7. Recognize and avoid the crisis points.
Decide when to stop working, don’t wait until you can’t work. Decide when to stop driving, don’t wait until there is an accident. Decide when you need help at home, don’t wait until your family are at their wit’s ends.
8. Caregivers need regular breaks.
At the absolute minimum, caregivers need the bulk of one day off every week and a weekend off every three months.
9. Even at very advanced stages, people don’t lose their identity and do not have to lose their dignity.
10. Humor helps an awful lot.
Have thoughts about this list? I’d be happy to hear about it. Email me at matthew.schrag@vanderbilt.edu.