Learn from the Expert (the Person with Dementia)

In the early days of our training in the SPECAL method of dementia care with Penny Garner in Burford, England, my sister Margo and I learned how important it is to learn from our mom (the expert) who had dementia.

After Dad died, when Margo and I would call Mom, one of the first things she would say is, “I wonder where your dad is.” Before we met Penny we would use the common sense answer, “Mom, Dad is dead.” After she heard that answer from me, at times she would ask if she had been at his funeral and who else was there. She seemed to have no recollection of having been at the wake or funeral service. I would tell her that she had in fact been there and tell her about the service, highlighting a few of the people who were there.

Common sense tells most of us that filling in the facts for someone with dementia is a good thing to do, but it became pretty obvious that filling in the facts for our mom didn’t help at all because a few minutes later she would ask, “Where is your dad?”

Besides just not being effective, this filling-in-the-blanks practice also chipped away at Mom’s self-esteem. After months of continually being corrected, her confidence was low.

We learned from Penny that Mom was not taking in the facts of what we said when we tried to “set her straight” about our dad, but she was taking in all of the feelings of sadness. Our truthful answer was making her feel sad and having no positive effect whatsoever.

Through Penny’s insight we learned that we needed to find an answer that mom would be content with, easing her anxiety. We also learned that if we tested a few answers and listened closely to her responses, she would “teach” us what the best answer was.

Once we opened ourselves to the idea of providing our mom with an answer that would keep her content and not contradict her world-view, through trial and error, we eventually found the best answer for Mom. We tried, “Dad is fishing,” and, “Dad is at the grocery store,” with fairly positive results, and we tried a few other answers that didn’t seem to provide much comfort at all.

One of the things we learned in this process is that the best answer for our mom would have to be an answer that accomplished two things: 1) it would make her feel that Dad was safe and well, and 2) it would provide a very easy-to-accept explanation for his absence.

Our dad used to own a heating and air conditioning company in Minnesota. He was on call 24/7. During the winter he had a lot of calls in the middle of the night, so we tried, “Dad is on a service call,” and it worked beautifully. When we used that answer Mom would usually say something like, “Oh, that’s right.” At that point we would change the subject to something Mom liked to talk about. After we started providing this new answer for only a short period of time, she started asking, “Where’s your dad?” less and less often.

We still had a lot to learn from the expert (Mom), but it was with that breakthrough that we knew we were on the right path to creating a safe haven for our mom.

If you are interested in learning more, I would suggest getting the book Contented Dementia by Oliver James. It is all about Penny Garner’s highly effective SPECAL method of dementia care.

I would love to hear other’s thoughts around this topic.

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