Here are some principles of communication, action, and understanding that I have learned from my patients. I hope that they are helpful to you and your loved ones.
1. Truth is relative, and we must consider truth from the individual’s perspective. Think about a modest, elderly man with moderate to severe Alzheimer’s disease. His family has hired a home health aide to help with personal care. He gets agitated every time she tries to give him a shower.
Consider his perspective. Because of his memory loss, he does not remember that she has been there every week for the last year. He just thinks there is a strange woman he has never met who is asking him to take off his clothes.
2. We must be calm, relaxed, and reassuring. Those with dementia will often absorb our moods by unconsciously perceiving our body language and tone of voice. Thus, we may inadvertently create agitation if we become irritated when a question is asked for the 34th time or upset when the sugar bowl accidentally falls to the floor.
3. Distraction can be a helpful tool. Most of us have learned that it doesn’t help to try to reason or argue when an individual with dementia tells you at 8 o’clock at night that they need to leave their house to “go home.” What often does work is to distract them with an activity that they enjoy, such as looking at photo albums, listening to music, watching a favorite movie, having a snack, or simply going for a walk.
4. It is important to be busy. No one truly wishes to be idle. The thing that can be difficult is to find an activity that an individual can do and enjoys. Here we would simply encourage you to think out of the box.
For example, a coin collector may no longer be able to detect the rare varieties and special coins that he once did, but he might spend two hours happily sorting a jar of change into pennies, dimes, nickels, and quarters. What do you do tomorrow? Mix them back up and let him do it again.
Similarly, if your mother likes to fold laundry, let her fold it. Did she finish it already? Shake it out and let her fold it again.
5. Involve family and friends. Dementia is a team sport. Many spouses feel that they should be able to take care of their wife or husband by themselves, but caring for those with dementia is more than any one person can do alone.
6. Live in the moment. Those with significant memory loss may not be able to discuss or appreciate politics, current events, sports, or even the weather. But many can still enjoy things that are directly in front of them. Try strolling through a gallery at a museum, an exhibit at a zoo, or a path in a garden.
7. Accept that some things cannot be fixed. There are many changes and losses in dementia that must be accepted. In addition to losing the ability to work, drive, or pursue hobbies, there is also the loss of the relationship—at least how it used to be—between husband and wife, parent and child. Dementia is ever-changing, and so acceptance must become a recurrent activity.
8. Seek joy. Seek out appropriate activities that bring joy to the ones you love. Take a walk in a park. Visit with family and friends. Play a game. Or, perhaps, just hold hands. For without joy, life—with or without dementia—would hardly be worth living.
© Andrew E. Budson, MD, 2018, all rights reserved.
Budson AE, O’Connor MK. Seven Steps to Managing Your Memory: What’s Normal, What’s Not, and What to Do About It, New York: Oxford University Press, 2017.
Budson AE, Solomon PR. Memory Loss, Alzheimer’s Disease, & Dementia: A Practical Guide for Clinicians, 2nd Edition, Philadelphia: Elsevier Inc., 2016.