This morning I read a wonderful story written by Bob De Marco called Memories, Memory, Alzheimer’s Dementia, on his blog the Alzheimer’s Reading Room. His devotion and willingness to provide care for his mother Dotty who was diagnosed with Alzheimer’s disease about 8 years ago was inspiring, as is the fact that throughout his loss and grief following her death, he continues to write about his ups and downs. He has found a lot of things that have worked to enable his mum to have the best quality of life possible, within the constraints of Alzheimer’s disease and the aging process. He wrote “So why was it that Dotty couldn’t remember Julian’s name, a person she saw every day, but could remember Helen and her name, and she only saw her once a week. It is obvious isn’t it? It had to be because of the way Helen treated Dotty, and how she somehow imprinted herself in the part of Dotty’s brain beyond the hippocampus. After many years, I finally realized it is not about memory, it is about memories.” He asked his readers to respond, and so I am doing this on my blog today. Professor Steven Sabat talked about memory at the recent Alzheimer’s New Zealand conference in Wellington, and suggested we need to understand the difference between recall, recognition and implicit memory. He said retrieval is the problem, that when we say we can’t remember something, it is actually that we can’t recall it at that time. When talking to someone with dementia, we should try a multiple choice questioning approach, rather than a ‘can you remember that?’ single question style as it may allow people with dementia to recognise and recall a memory more easily. When discussing implicit memory, he suggested we may not ‘remember’ or recall the exact nature of a memory, but we are likely to remember the feelings, especially if they have been negative; this could help us understand why people with dementia sometimes become hostile or angry.
I have often said, it is not what someone says, but the way it is said that people remember. When I was volunteering at a nursing home last year, I spent time with a lady and some of the staff would say glibly, ‘don’t waste your time on her, she is away with the faeries’. She spent her days dressed as if to go out, with her handbag on her arm, makeup on and hair beautifully done, often stating her daughter was coming to take her out. She occasionally became angry and hostile with interactions, and I could not gauge when or why. However as I spent time with her, and talked about the sorts of things that might have happened in her childhood, she was able to recall memories. I learnt she had grown up on a farm, the furthest from the school and hence she was home schooled. I learnt her father had the first car in the district. I learnt so many things about her, that she taught me. She still did not remember my name, but her face lit up most of the days I saw her. She said things like, ‘I think I know you, but can’t remember how’. When we spoke, I would bring up the things I knew about her, and she would smile brightly, asking how I knew these things. When I would then tell her she had taught me these things, her smile would widen, and with some dismay she would say things like, ‘so my brain does still work’. Her memories are there, she just couldn’t always recall them. Bob and Steven are absolutely correct; with the right words, and time, people with dementia can still recall some of their memories. Interestingly, when you are in the early stages of dementia, being able to recall memories almost always brings a response, ‘well you can’t have dementia!’ If you spend time with people with advanced dementia, it is important to be truly caring, to allow them time to respond, to give them choices when you ask them things, and to be there for them, with them and by their side.
I wrote in my journal recently, “We are human beings; it’s just that some people stop treating people living with dementia as if they have somehow stopped being human beings.”