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A tribute to Peter Ashley

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approaches to dementia care, dementia awareness, men and dementia
Peter Ashley

Peter Ashley died on 10th November 2015. This brings to an end a remarkable life and he is much missed by the people who knew him. He made a great contribution to how dementia is perceived, spoken about and responded to.

Peter had a background in engineering and maths and worked in the electronics and computing industry. He was a successful businessman and by the age of 64 had become a director of a computer graphics company. At this point, in 2000, his life was turned upside down by a diagnosis of dementia with Lewy bodies.

After a few months, he resolved to make the best of things and embarked on a second career as a dementia activist. He was elected as a trustee of the Alzheimer’s Society which may well have been the first time that a national dementia organisation had a person with dementia on its governing body. During this time, around 2004, he established within the Society a group called Living Well with Dementia. This is probably the first time that now well-known phrase was used.

His contributions included input into the NICE/SCIE Dementia guidelines, the drafting of the Mental Capacity Act, and the development of the National Dementia Strategy (published in 2009 under the title Living Well with Dementia). He was instrumental in the founding of the Lewy Body Society. He was also a frequent attender at conferences and events in the UK and further afield and had a huge circle of acquaintances. His wife, Ann, was instrumental in helping him to achieve these things and herself deserves great credit

I met Peter several times over the years. Our closest interaction was that he contributed a chapter on Living with Dementia for an edition of the Oxford Textbook of Old Age Psychiatry. In fact, no chapter had been forthcoming, so I was tasked with the delicate mission of investigating the matter. We had a phone conversation in which we explored various means of helping him to get started on the writing (from which, I presume he had some problems with executive functioning). The agreed solution was that I should send him a set of questions on issues we wanted him to cover and he would write around this as if he was doing an interview. It worked beautifully.

The phrase, Living Well with Dementia, is now in the groundwater. It may not tell the whole story, as of course some parts of the dementia journey may be harrowing, but it is an effective counterweight to all the ‘dementia sufferers’ bilge you read in the newspapers. Peter eventually died of cancer, so he and dementia were probably equal partners after 15 years post diagnosis together.

[see http://www.dementiaallianceinternational.org/peter-ashley-life/ for more information]

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Peter Ashley

I regularly met Peter at conferences and events and especially while working at the NHS Trust I work for here in South West Yorkshire. He was always forthright and passionate concerning how his work and opinions might better the lives of people with dementia, about which he cared greatly. He used to help a group of my colleagues concerning how we might be more innovative in our work in the Trust on a regular basis, and I always enjoyed hearing what he had to say. It was invariably a different take on a problem and one that would immediately make a difference to people's lives. I learnt a lot from Peter and really appreciated how open he was to anyone who would listen. I shall miss his sense of humour, and his passion and just how much he cared about 'living well with dementia'. Lastly, I should like to quote him as these words stuck then and they still resonate now: 'I am living with dementia I am not dying of dementia'...a phrase I have used regularly in workshops and presentations...so thank you Peter!!

I knew he was unwell, however I did not know that he has passed away so thank you Tom for your moving tribute, it inspired me to want to contribute something too.

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