After seeing her father and several family members diagnosed with Alzheimer’s Disease, Carol Jennings was determined to delve deeper and this drive led to scientists making a ground-breaking discovery- a gene that could cause Alzheimer’s Disease. Carol is living with early-onset, familial Alzheimer’s and is now retired. She was previously employed as a ‘Younger Families with Dementia Support Worker’.
Thank you to Carol's husband Stuart Jennings who helped respond to these questions.
Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?
In 1984 Carol’s father Walter, was diagnosed at 58 with early-onset Alzheimer’s Disease. Over the next two years, four of Walter’s siblings were also identified with the same illness. Although the medical consensus at the time was that Alzheimer’s did not have a genetic element, Carol was convinced otherwise and fought her corner until a research team under Professor Martin Rosser and Professor John Hardy picked this up, and got the funding to explore the issue further.
Over the next 5 years Carol worked with the team until the discovery of the APP gene in the family in 1991. Carol went on to spend the remainder of her working life as the first ever support worker and advocate for families living with young onset Alzheimer’s.
Carol has also been extensively involved with raising the profile of Alzheimer’s both in the media and at conferences around the world.
What was your motivation for getting involved in the field of dementia?
Carol wanted to raise awareness of research and the difficulties early-onset Alzheimer’s causes for people living with a diagnosis, their families and carers.
What would you say has been your greatest achievement or highlight?
Carol’s involvement was crucial to the discovery that there is a genetic cause for Alzheimer’s Disease and her extended family were the first in the world to be identified with the APP Gene.
Carol also had the privilege of supporting and sharing information with families struggling with early-onset dementia and set up regional support groups.
At stage 6 of Alzheimer’s, Carol has little cognitive function left (though still greatly loved and cared for by her family), but one of the last things she did when able was to arrange for her brain to be donated to the UCL research team and Brain Bank.
If you could change one thing now to improve the lives of people living with dementia, what would it be?
Great access to support groups for people in similar circumstances and easily accessible involvement with research teams in the many medical teaching centres.
And another thing...
"Do not go gentle into that good night” (Dylan Thomas)
This was both Carol’s and her husband’s (Stuart) foundation principle after being confronted with the reality of genetic Alzheimer’s.