Laughter is the best medicine
EX-GP tells of her life with dementia
DR Jennifer Bute has “no fear” of the future. Her response to any suggestion she might have is met with surprised laughter.
Diagnosed with Alzheimer’s disease 10 years ago, the former GP has the reassurance of good care in a “dementia inclusive” retirement village, a drug regimen that is working well for her and the support of a loving family.
Perhaps even more beneficial to her wellbeing is her continued drive to give hope to others facing the fear and hopelessness of a dementia diagnosis.
While a possible cure or effective screening process may be some years away, evidence is growing that it is possible to slow the progression of the illness and the former doctor says she is proof of that. Laughter is crucial, she says, adding that her “speciality” is being able to get patients with advanced dementia to talk using humour
“when others think they can’t”.
She said it was relief to get a diagnosis, saying one GP refused to refer her for specialist tests because he “didn’t want to lose a good doctor” and believes that swift treatment with a drug used to treat Alzheimer’s has helped delay the progression of the illness.
In her mid-70s now, she was working as the senior partner of a large GP practice in Southampton, and in her early 60s when she was diagnosed.
“The crisis came when I was chairing an important meeting,” she said. “I still remember it – it was a child protection case with the police, social workers, the whole lot.
“And I can remember saying, ‘Lovely to see everyone and can you please introduce yourselves because I don’t know anyone here and I’ll start with you.
“And he turned to me and said, ‘Don’t be so daft Jennifer, we have worked together for 25 years.’
“I didn’t recognise a single person in that room.”
Dr Bute was seen quickly by a neurologist but says the process to diagnosis her illness took far longer than it should have. She recalls how one doctor carried out tests and told her that yes, there was something wrong “but she was too good a doctor to lose” so he wasn’t prepared to giver her a diagnosis.
“But my patients meant too much to me. Imagine if I had made a mistake.”
She was finally diagnosed by a consultant with expertise in young onset dementia, who told her she had Alzheimer’s disease.
“I’m not sure that was necessarily true,” she says, “But you were allowed to be put on Donepezil [brand name Aricept] if you had Alzheimer’s at the time but not if you had any other type of dementia. For me that has made a difference.”
As her symptoms worsened, Dr Bute and her husband Stanley moved to a retirement village in Somerset, run by St Monica’s Trust, which combines independent living with care and also runs nursing homes for those with advanced dementia.
“I passionately believe we can slow the progression of the disease and I think I show that. I’m on half a dose each of Donepezil and Memantine and it works perfectly for me.
“I do a lot of talks and I talk about getting on your ‘sledge’. ‘S’ is for social engagement: most people with dementia shut themselves away.
“The ‘L’ is laughter. If you get someone to really laugh, they can talk much better afterwards. ‘E’ is enjoyment and exercise. People think when they are walking and exercise helps to form new neurons.
“‘D’ is for diet – you have to eat well – and ‘G’ is for cognitive stimulation. I remember being at a conference where a Japanese professor said that in Japan they encourage people with dementia to do half an hour every day of reading, writing and arithmetic and he showed video evidence of the difference it made.
“So I decided to start running Japanese memory clinics based on that. I believe it slows the progression.”
She adds: “We can keep people well for far longer than we used to think. You can get your brain to relearn things. At one point when someone had a stroke there was nothing that could be done – they were just left to die. If someone has a stroke these days, we expect them to get better, so why not with dementia?”
The Herald is campaigning for fairer care home costs for people living with advanced dementia.