The Shared Experience Can Be Helpful

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September 13, 2017

The Shared Experience Can Be Helpful

When you are the caregiver of someone living with dementia, it is easy to feel overwhelmed, alone and at wits end. So, I thought it could be helpful to investigate what’s “out there” that can ease some of those feelings. We use Google for everything else, why not Google “Books/works written on dementia”. I found two areas I will direct your attention to: book reviews and blogs on the topic.

I found the blogs to be written primarily by the direct caregivers of people living with dementia. The books have been written by both caregivers and professionals who have researched the disease and/or worked directly with the patient. The common thread is the shared experience, both for the writer and the reader. I encourage you to explore Google on your own, but I wanted to share the resources I was most drawn to.

Topic blogs can put you in touch with people who are sharing your experience in “real time.” You have the ability to interact and respond in “real time”. The Five Best Blogs About Alzheimer’s and Dementia present five separate blogs written by family caregivers and professionals – the content is personal, focused and relatable.

In terms of books, I was drawn to Contented Dementia: A Revolutionary New Way of Treating Dementia by Oliver James, because the approach described by the author is one that I have found to be most effective in my 26 years of relating to persons with the disease. The author explored the theory of a woman who worked with her mother who had dementia. In her interactions with her mother she took a “person-centered” approach and came to believe that the only difference between a person with dementia today and the person they used to be is “they could no longer store new information efficiently”. She said that if you stop requiring them to store new information when you communicate, many problems will disappear. She came up with three commandments: 1. Don’t ask questions 2. Learn from them – they are the experts on their disability 3. Always agree with everything they say, never interrupt.

The author explores the observation that memories from long ago are still there largely undamaged and intact. When you know this, it helps you make sense of what is being said and helps you release the person suffering from their isolation. Since they don’t have new information, they are using information from the past to make sense of their present situation.

Again, I found this a clear description of what I have experienced with persons living with dementia. I have always tried to “listen” for clues as to where they were and then enter into that space. Often, it’s a nice space for them. The struggle comes when the caregiver tries to force the person into the concrete reality of the caregiver’s world. They have no capacity for this.

Books and blogs can provide shared experiences that open our eyes, give us new ideas, encourage us to try new approaches and most importantly – help us to NOT feel so alone. Good hunting with Google!

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