After many difficult years facing a dramatic personality change in her husband and with no idea what had brought about these changes, Jill Butcher’s husband Laurie was finally diagnosed with Frontotemporal Dementia (FTD). She discovered the UCL-led FTD support group and from there decided to share her experiences and help others living with this diagnosis.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
I have been organising monthly meetings of the West Sussex Frontotemporal Dementia (FTD) Support Group, for about two years. We talk about our experiences, share our problems and exchange practical information and support.
Off and on, I had kept a journal of my experiences with Laurie and his behaviour, and then decided to write a novel based on all that was happening to us - Beyond the Marriage Vows (now available on Amazon).
The novel has received local coverage, leading to a feature in Chat Magazine. I’ve also been asked to give a talk to a local women’s group and I’m being interviewed on our local hospital radio in a couple of weeks’ time. I am planning to donate all royalties to The National Brain Appeal.
What was your motivation for getting involved in the field of dementia?
In December 2013, my husband, whom I lived with for over 40 years, was diagnosed with Frontotemporal dementia (FTD), after some years of bizarre behaviour. About 8 years before that we began to lose friends. He used to be a lively witty man – a party animal – but his jokes became tactless and rude.
During 2013, the police called at our house 5 times. He was banned from supermarkets, the library and other places in Haywards Heath. It was terrible year for me as I couldn’t understand why he had become so nasty.
After his diagnosis I attended various dementia support groups and courses, but did not find them very helpful as FTD is so different from other forms of dementia and was less understood. Later I discovered the FTD Support Group at UCL. I noticed on the website that there was no West Sussex regional contact so after a while I offered to fill the gap.
What would you say has been your greatest achievement or highlight?
The first FTD support group meeting I attended was incredible for me. I felt I was ‘coming home’ to people who understood my experiences
I intend to write a sequel to Beyond the Marriage Vows.
I am also on a panel for Dementia UK – the Lived Experience Advisory Group (LEAP) - and I have attended two meetings so far. Things are getting more difficult as my husband’s health deteriorates. It’s hard to plan.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
For me, both public and private understanding would have made a huge difference.