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Dementia and the light of love

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Alzheimer's Disease and Dementia

It is a typical English bank holiday weekend, raining and chilly, so I have been reading. To be precise, I have been reading a review copy of a volume called Alzheimer’s Disease and Dementia: What Everyone Needs to Know, which is by Steven Sabat and published by Oxford University Press. It’s a good read. I think it’s aimed at quite a general audience as it is not especially technical. Where it is really good is in describing the areas that Steven Sabat has researched on. He’s best known for his work with people who have dementia talking about their experience with the condition. This has had two really useful outputs: one is to add to our knowledge about what works and what doesn’t when we communicate with and try to support people with dementia, and the other aspect is a useful model of the self of sense and how it is affected in dementia. However, I don’t want to duplicate my review here, you’ll have to read his book to learn more about that.

The reason for writing is that reading this book set me thinking about people with dementia and their families whom I have met at various times in the past, and in particular those instances where the interactions were really positive. One of Sabat’s chapters is given over to resilience, selfhood and creativity. Resilience has various definitions but in short it is about the ability to resist, manage and adapt to adversity. Studies by Phyllis Braude Harris, and others, show that, in the case of dementia, resilience is characterised by accepting the diagnosis, maintaining optimism and a positive attitude, and getting on with life. Having opportunities to contribute and to help others is an important part of this relatively successful state. The opposite scenario – resenting or fighting against the diagnosis, concentrating on one’s losses and limitations, and giving up – obviously has worse outcomes for everyone.

A couple I met years ago came into my mind for the first time in ages. They weren’t called Jenny and Robert, but they might have been. Jenny had a diagnosis of probable Alzheimer’s disease. I think she had worked as a teacher. Her husband was in the Church, let’s say he was a college chaplain. Obviously they were both sad at the diagnosis, as would be natural, but she wasn’t clinically depressed. They both had a positive attitude and there was a fair degree of humour between them. What’s more though was the quality of the interaction as they merely did so much as look at each other. It was fresh, luminous and unquestioning. The strength of their mutual devotion was quite humbling and I felt that they would do anything to help each other. It’s likely that this would be a two-way process, that Jenny would continue to be helping Robert even as her dementia progressed. In return, he would not be pointing out to her the things that she couldn’t do but they would tackle the challenges together. I think she’d always had a radiant personality and this wasn’t about to change.

I don’t know the outcome. They moved away and later so did I, but I’d be amazed if the light of love hadn’t continued to illuminate their paths.

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