I met Tommy Dunne, I think, the first time I met Chris Roberts. This was at the Alzheimer’s Show in Manchester.
I met Joyce and Jayne there too.
Whilst the first time I met Tommy he told me how he received his diagnosis of dementia, I think our conversations have since then covered quite a range of topics. There’s absolutely no doubt that Tommy loves Everton; and Liverpool; and golf.
Tommy will explain to you, if the conversation comes up, how he was given the diagnosis with the words: “The good news is that you don’t have bipolar; but the bad news is that you have young onset dementia.”
There’s no reply to that really. I think as more research gets done we’ll uncover that there are many more people beneath the age of 65 who are living with dementia.
I have found all the individuals I’ve ever met with young onset dementia very interesting, in fact, but all very different. Invariably, they tell me how their diagnosis totally turned upside down their social and working lives, including interaction with friends and the employer.
Tommy mentions in this video (above) how his dementia was misdiagnosed as a mood disorder. I have found this quite common in fact, and on deeper inquiry I found this to be quite a consistent strand in the literature too.
This means that people with young onset dementia, including Alzheimer’s disease or vascular disease, get told they are primarily depressed or manic by the medical profession. Not only are they potentially given the wrong management, but they are also denied the actual correct way to progress.
There is no ‘right or wrong’ answer on the correct way to progress, but generally the approach is to value what people can do rather than home in on what people can’t do. This means playing to people’s strengths, not weaknesses.
An ability to live better with dementia is of course the essence of a ‘dementia friendly community’. It will have given Tommy enormous pride, as it will have done for Gina Shaw who is equally lovely, to receive one of the ‘Dementia Friendly Awards’ from the Alzheimer’s Society for the SURF project.
The best way to learn about what it’s like to live with dementia is simply to ask as many people you can about living with dementia. People closest to them, including friends and family, will give you a complementary perspective too. This is not information you can get from any books.
Meeting the person rather than fixating on the disease is not, however, to ignore the health and wellbeing needs of that person. People living with dementia and carers also get ill like everyone else, say with an acute exacerbation of bronchitis or asthma, and are entitled to the best care from the NHS too.
It’s an honour to have met Tommy and Joyce. The work that they both do to promote an understanding of dementia is incredible.
It’s not hyperbolic for me to say that I’m proud I know them.