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When someone you love is diagnosed with dementia, it’s a shock for all the family. Both my mum and my dad had dementia and for many slow years I had to watch the disease take away from me two of the kindest, gentlest people I have ever known.
Watching them grapple to find the words and do simple tasks like making a cup of tea, washing themselves or even remembering my name was heart breaking for all of us. These weren’t just my mum and dad's emotions, they belonged to me and to everyone who knew them, as it is with anyone whose life is blighted by dementia. While they still had moments of clarity I was able to tell them I loved them, but I knew we were living on borrowed time.
Early diagnosis really can make a difference and both drug and non-drug treatments can go some way to prolonging that all important quality of life; you can learn to focus on what can be done, not what’s been lost.
Dementia destroys lives and affects whole families. There are more than 800,000 people in the UK with dementia, the commonest cause of which is Alzheimer’s disease affecting around 65% of cases. There are many other types including Parkinson’s Disease Dementia, Frontotemporal Dementia and Vascular Dementia. Increasing age is the greatest risk factor but over 17,000 people under 65 are also affected. Numbers of people with dementia will increase significantly over the next few years and there is an urgent need to find better ways of helping them and their families.
RICE is a registered charity carrying out research into assessment, diagnosis and treatment of dementia; to better understand and manage problems that affect the brain, memory and thinking processes. Our internationally recognised research aims to find better drug and non-drug treatments for people with dementia, to understand more about some less common types of dementia and to develop technology that can help people and their families.
In our Memory Clinic in Bath, one of the oldest such clinics in the UK, we see patients on a daily basis and can help them and give advice and practical support to families and carers including specific education and training courses. Many of our patients and their families help with our research and without them it would not be possible. The need to improve treatment and care for people with dementia and their families has never been more urgent and it is essential that we expand our research programme now.
Every donation will go directly towards our research to improve the quality of life for everyone affected by dementia; we hope that our Lifeline appeal will inspire you to help us with this challenge.
Sir Terry Pratchett
Writer Sir Terry Pratchett has a rare form of dementia called Posterior Cortical Atrophy.
Sir Terry noticed something was wrong with him from 2005. He began to have problems typing, dressing himself and had problems with his eyesight, misplacing objects in his vision. He said, “I was doing an Italian tour, when I arrived I had a button done up wrong on my shirt. I came home and I thought I don’t know what’s going on here. It was little things like that all the time.”
Sir Terry went to the doctor and was finally diagnosed with dementia in 2007. He said he felt uninformed on his condition after his diagnosis, and felt apprehensive.
In 2008, Sir Terry began attending the RICE memory clinic under the guidance of Professor Roy Jones. RICE’s experience of rare forms of dementia meant they were able to treat him and help provide him with the best medication available to help him. RICE’s treatment programme helped Terry conquer his fear that he might never write again and he’s recently finished another book.
Sir Terry said, “I don’t know what I would have done without RICE, I really do not.”
Terry and Ingrid Aspell
Terry Aspell has Alzheimer’s disease. Ingrid, his wife, remembers her husband as a clever, thoughtful and energetic man. Terry is now a very different person, she says.
From 2005, Ingrid noticed that Terry was becoming increasingly forgetful. A former accountant, he began to forget numbers and then he started to forget places and then people. His memory problems worsened, and in 2007 he was diagnosed with Alzheimer’s disease. Over the years, Terry’s condition gradually deteriorated until Ingrid became his full time carer, helping him to do everything from eating to showering. Ingrid said, “it is not an easy thing to handle because you become more of a mother than a wife. It is a loneliness that you cannot really describe because you are totally responsible for somebody who is desperately ill.”
Fortunately RICE have helped Terry cope with his condition through both drug and non-drug treatments such as such as cognitive stimulation therapy. And RICE’s carer’s courses have taught Ingrid how to look after her husband. Ingrid said, “they gave me the confidence in myself and I can only ever say my gratitude to RICE will be with me for the rest of my life.”
Behind the Scenes
Tony Robinson and Sir Terry Pratchett talking
Filming with Tony Robinson
Tony wearing a brain machine
Filming in the lab
- Tony Robinson
- Terry Pratchett
- Gavin Ahern
- Executive Producer
- Gill Tierney