By Jennifer Bute
I passionately believe we can really improve things for those living with dementia. When I was diagnosed 10 years ago, I had no help and no support apart from a diagnosis. So I set about working out principles for myself which I have found apply to everyone no matter what type of dementia. At the time I read everything I could on the subject, although I’m no longer able to do this.
I had been a medical doctor and involved in medical education but had to take early retirement because of my diagnosis. My father had dementia and if I had known then what I know now I would have treated him so differently, although I loved him dearly and did my best. There was very little help. So many people say this to me after hearing me speak or reading my book.
After my diagnosis I joined with others across the world to reduce the stigma and to get our voices heard and there has already been great progress. We spent time explaining the reasons and the simple principles and I was often asked at conferences if I had a book about my story but I felt there were enough books out there already. Nevertheless, I was persuaded that a book would help others and that the different perspectives I had were unique: as a doctor, as a daughter, as someone experiencing dementia for themselves, and now living alongside others with dementia.
But of course I could not write the book by myself. I had met Louise Morse at a conference at which we were both speaking and had become friends She is an authority on dementia in her own right from the carer and scientific perspective. She would drive me to conferences with a recorder and microphone attached to me and record my stories as well as my lectures. Louise wrote, I edited, and my family checked. Those who know me say Dementia from the Inside sounds as if I wrote it myself which indicates how well Louise did!
There are just three simple principles that apply to everyone with dementia which are easy and positive for anyone to use.
These are:
- there’s always a reason;
- feelings remain when facts are forgotten;
- and patterns continue.
These principles are explained in detail in the book along with something of my story as that also explains how tough times have been a source of growth in my life.
I now live in a dementia inclusive village and run twice-weekly Japanese Memory groups which have in many ways made a tremendous difference here. I am grateful for the management of the village who support me in many ways.
About Jennifer Bute
Dr. Jennifer Bute previously worked in Africa as a doctor and was a GP for 25 years, involved in medical education. She took early retirement as she realised things were not right, and was diagnosed with dementia 10 years ago. She passionately believes more can be done to improve the future for those living with dementia.
Connect with Dr. Bute
Jennifer’s website: www.gloriousopportunity.org
2 Responses
Welcome to AlzAuthors and thank you for this remarkable book. Your three guides are a reminder to all that those with dementia are still with us and their feels are not to be disregarded. I look forward to purchasing your book and reading every page.
I like your three principles. I think they could be a pathway and themesfor flashbacks I plan to include in my blog about my daughter’s Younger Onset Alzheimer’s and the patterns and feeling our whole family has had caring with her and my mother during her Alzheimer’s.