When I tell people that I provide dementia care, the most common response is an exclamation of sympathy and a comment about how patient I must be. I know dementia caregiver stress is legitimate for many reasons and I can understand their reactions. But I’m not a particularly patient person and I rarely feel called upon to be patient with my clients. Why is that?
The secret to a more enjoyable experience in caring for someone who has dementia lies in our expectations. Here’s what my expectations are when I’m with someone who has dementia.
1—Reminders and memory-jogging will not work with dementia
When I was raising my children, I spent a lot of time explaining what they needed to do and then reminding them of what they had forgotten. When they had a test at school, I helped them by quizzing them on spelling words, times tables, and history facts. I expected repetition and reminders to be effective. They were effective, because my children had the ability to retrace their thought processes and recall information.
With my dementia clients, I do not expect memory testing to work. People experiencing dementia are losing memories, but they are also losing the ability to remember. Quizzing them or jogging their memory will not help them remember. It will only make them feel embarrassed, inadequate, and lost. Instead of trying to jog their memory, I happily repeat whatever information they need, whenever they need it. My expectations are aligned with their abilities.
2—A person with dementia will read my feelings and moods expertly
I expect people who are experiencing dementia to be operating without rational thought, yet their intuitive thought systems to be operating normally. This means that they will be experiencing none of the distraction our rational thought systems provide and have all the more time to read my feelings and moods.
Whenever I am with someone experiencing dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy. There is always something from one of those categories available in the present. If not, we go for a walk or drive to find it. I know managing mood is my responsibility.
3—Rational thought will not be available to someone with dementia
I think of dementia and rational thought in terms of functions. The top three functions I do not expect my clients to be able to perform are seeing cause and effect, prioritizing ideas or actions, and being able to follow the steps of a task or sequence. Because I don’t expect them to be able to do these things, I don’t become frustrated when they can’t. I understand that they don’t have those skills and use my own when they’re necessary.
So, although it seems obvious to me that icy sidewalks mean dangerous walking, I don’t expect it to be apparent to my clients. And when we need to get ready to go somewhere on time, I focus our attention on the next thing that needs to be done, not on the destination or looming deadline. When a task needs to be done, we do it together as teammates.
When our expectations match our companions’ capabilities, there is less dementia caregiver stress and less stress for the person experiencing dementia or Alzheimer’s. This is the secret to lowering frustration and stress for both partners in the dementia care experience.
Judy Cornish is a former eldercare lawyer and the former owner of Palouse Dementia Care, a dementia care agency that provides in-home dementia care to seniors in northern Idaho. She is the author of Dementia With Dignity and The Dementia Handbook as well as the creator of the DAWN Method of dementia care. Judy believes that with a little training, families can provide excellent dementia care at home with less stress and more companionship. www.thedawnmethod.com