Living with dementia

By Tim Dale
BBC York & North Yorkshire

There are currently 700,000 people with dementia in the UK.

All this week BBC Radio York's Adam Tomlinson has been learning more about dementia, as York hosts a major conference on the problem that affects thousands of people each year.

During the week Adam has met a number of people affected by the disease.

The carers

One woman from York, cares for her mother who has dementia. She explained how it has affected her life:

"Mum's brain can't deal with new information. Everything we do that we take for granted, she needs help with because she can't do it and that upsets her.

"We can't begin to imagine what that is like for her, except maybe if you think of that feeling of panic you get when you arrive in a car park and your car isn't where you thought you left it.

"For mum that panic is there a lot of the time. As a carer it is heartbreaking to watch her deal with that and it is emotionally and physically exhausting trying to help her.

"When mum first came to live with us we didn't know what we were dealing with and we tried to do our best.

"A lot of the time we seemed to be making a bad situation worse and we really needed help.

"We did have a GP who put us in touch with a community psychiatric nurse, she gave us excellent support. She also put us in touch with the Alzheimer's Society who gave us a lot of useful information.

"The one thing that made a difference for me, my family and my mum was that our GP gave us some information about a way of looking after people's dementia that is called SPECAL.

"It stands for specialist early care for Alzheimers. It is an approach that tries to give the person with dementia a sense of well-being.

"You do that by trying to avoid this problem of their brain not being able to take in new information.

"You use what you know about the person and their past to keep them in a better frame of mind and it has really helped us.

"I wish that SPECAL was available nationwide, so that carers don't find out about it by chance."

Another woman's father died 18 months ago. He had suffered from dementia for five years. She told Adam her story:

"Every day was a new day, we were never sure what we would face, how he would behave or what he would do. It was like just being blindfolded the whole time.

DEMENTIA FACTS There are currently 700,000 people with dementia in the UK There will be over a million people with dementia by 2025 Two thirds of people with dementia are women The financial cost of dementia to the UK is over £17 billion a year Family carers of people with dementia save the UK over £6 billion a year 64% of people living in care homes have a form of dementia Two thirds of people with dementia live in the community while one third live in a care home

"We didn't know, in advance, what the family or the individual would face. He was so ill he never knew he had dementia. He never knew he was behaving strangely.

"My mother put it down to him being old and awkward. He just caused a fuss and slowly he deteriorated. We were all just floundering not knowing it was dementia.

"It was totally frustrating and absolutely draining. My sister and I saw our father deteriorate before our eyes, he was retracting backwards.

"Looking back we know more and we can see what was happening, he was returning to childhood, he was behaving like a five year old, it was obviously dementia. But at the time it was draining on the whole family.

"We had to support him and my mother, we were also trying to support each other and come to terms with what was happening. It was raw, absolutely raw."

The expert

Professor June Andrews is The Director of Dementia Services Development Centre at the University of Stirling, the organisation behind the conference in York.

"Dementia will be an increasing challenge as the population gets older. Unfortunately we don't know a huge amount about how to stop older people getting dementia. All the things that are good for our hearts are probably good for our heads too.

"Eating well, getting plenty of exercise and having good company can all help keep dementia at bay for older people.

"But in reality there will be thousands of people needing care and that's why all these professionals are coming together to talk about the issues and to talk with people with dementia.

We've got to work out what is the best we can do for people who've got this issue in their lives right now. Professor June Andrews

"The conference is really about how we are going to make things better in the future

"At the moment we spend more on dementia than we do on cancer, heart disease and stroke put together so it is a huge issue and getting it right is really important.

"One problem is that quite often people don't get enough information early enough. There is a lot you can do to keep yourself well if you have dementia, but you need to know that you have a problem.

"That means doctors, health workers and all of us need education to spot the signs of dementia earlier.

"A cure is something that is spoken about; such as what sorts of things are coming up in gene therapy for example, but the main emphasis is what you can do to keep yourself well.

"I am afraid we're working on the assumption that the cure is quite a long way away. We've got to work out what is the best we can do for people who've got this issue in their lives right now."