Tearing down the dementia taboos

WHEN Judi Dench brought the plight of writer and philosopher Iris Murdoch and her agonisingly brave struggle against Alzheimer's disease into living rooms worldwide, the taboo of dementia was gently broken. As the credits rolled, people silently feared how they would cope if they, or their loved ones, were ever affected by dementia.

The fact is that in some way or another you probably will be. More than half a million Britons have dementia, an irreversible illness for which there is no cure. It causes memory loss, confusion, difficulty communicating and changes in behaviour and personality.

The former US President Ronald Reagan also had Alzheimer's. And it was announced this week that the actor James Doohan, best known for playing Scotty in the original Star Trek TV series, also has the disease.

Alzheimer's accounts for 60 per cent of all dementias and when a doctor confirms a patient's worst fears, panic can spread family-wide. But there is no reason why a diagnosis must mean hospital, 24-hour care, or even leaving home.

Rose, an 81-year-old former statistician at Rowntree's, cannot put her finger on when the first signs of Alzheimer's began to creep up on her. But when red letters started to arrive, friends seemed to be strangers and days slurred into each other, she tried to manage as best she could on her own.

For somebody who had been meticulously organised all her life, Rose was annoyed by her memory slips and set up a system of writing notes to help her remember.

Eventually, she consulted a doctor and sought help through Selby and York Primary Care Trust (PCT).

Sitting in her jeans in her beloved flat, Rose is proud of how she has coped.

"It came on gradually, I didn't lose it all like that," she says. "I started to make notes for myself and put them all over the place such as on my bed, to remind me when people were coming to see me because I used to forget and go for a walk - it caused chaos for others."

With professional help, Rose found medication that suits her and a carer who "understands" her.

She writes her commitments on a wall chart and ticks off the days as she goes along. Her pills are arranged in days-of-the-week boxes, she wears her house keys round her neck and she has a Message In A Bottle - a capsule containing all her personal information which is kept in the fridge, to help paramedics in the event of an emergency.

She has chosen a power of attorney and handed over her finances to her nephew. "I don't have to worry about anything now," she says. "I'm back to pocket money, which I found difficult at first because I've always been independent and done my own thing. But I know if I didn't have help I would probably have to go into care and I really enjoy living independently."

Staying within a community who have known and loved her for years has been an advantage for Rose. She smiles when she relates her weekly visit to the butcher, who shouts "the usual?" when he spots her in the queue. But Rose has forgotten what her "usual" is. "I always say 'yes' then wonder what on earth it is - it's always a nice surprise," she says.

Rose has learned to let people help her.

"I'm still confused but I know I don't have to be," she smiles.

"I couldn't manage without help. I know I couldn't stay here on my own. It took me quite a long time to accept it, but I've had to."

But what about patients who cannot cope on their own? What about those who need more support than one carer than possibly give?

Hazel, 68, of Selby, cared for her husband Gordon after he was diagnosed with Alzheimer's last year. Although the 81-year-old former police officer's memory started to fade six years ago, Gordon deteriorated rapidly in January and was admitted to Worsley Court.

"Looking back, there were probably signs before that, but when you're living with someone you don't always realise," says Hazel.

He forgot where he had put things and he forgot names. He would talk to someone and ask me who they were. I'd say "you've known them for ages"."

"They patients don't always know you because they're always looking for a face from the past like a mother or a sister. He would ask who I was and why I was there so I'd point to our wedding photo on the wall and say 'that was us on our wedding day'.

"I'd get a bit irritated, but you do. Then I'd feel guilty."

There were only ever the two of them throughout their 41-year marriage, so despite Gordon's changing condition, Hazel was determined that his home life should remain as strong as possible.

Gradually, she took over day-to-day matters that had always been Gordon's domain. All the things he had enjoyed before, such as walking and race meetings, continued with her by his side.

But the 24-hour care that Gordon required took its toll. "I was always telling people that we were all right. I could do the finances and correspondence, he stopped doing it so I dealt with it," says Hazel.

"I didn't want him to wander outside on his own and you have got to be watching them all the time. They don't know where they are, going round picking things up, some things are all right, but others can be dangerous. It is hard because you don't want to mollycoddle them too much.

"He had difficulty sitting down in the car and shopping was hard because he wouldn't wait in queues."

She tried to adapt their home to suit his needs, but struggled without professional support.

"Initially, I did my own reading up and got leaflets from the Alzheimer's Society, so I used to say tell the doctor we were all right," she says. "When you come to the point that you say you're not all right, it's hard to find out what to do."

Hazel devotes her life to Gordon. She visits him in Worsley Court twice a day, and is full of praise for his carers, friends, neighbours and family.

"He's content there," she says. "I can sit and hold his hand and his face is very mobile, we can have a laugh. They are smashing lasses and they do everything they can for him."

Amanda Steels, a community psychiatric nurse based at Cherry Tree House, in York's Tang Hall, believes Alzheimer's is no longer a "dirty word". New medication, increased knowledge and better care facilities have all helped to throw off the taboo.

But, despite increased awareness, well-meaning relatives desperate to make life simpler for their loved ones can struggle to cope with the reality of a diagnosis. Amanda says rushing out to buy equipment such as microwaves can add to frustration, because the memory loss accompanying Alzheimer's makes it virtually impossible to learn new things.

"Buying new things is a waste of time because it throws people into a flap. A lot of the time other people are the problem. People ring me and say something must be done, they need to go into care, we must change things. I say 'But why? We can't wave a magic wand. We have to make sensible plans for people without jumping in at the deep end and have people ending up in hospital or in care.'"

Alzheimer's disease fact file

Symptoms include

Memory problems

Communication problems

Mood changes

Treatment

There is no treatment to cure Alzheimer's disease, but drugs that may alleviate some of the symptoms are Aricept, Exelon and Reminyl, generally used in people with mild to moderate Alzheimer's Disease. They are not effective for everyone and may only temporarily improve or delay memory loss.

A newer drug, Ebixa, can temporarily slow down the progression of symptoms in people in the middle and later stage of the disease.

Complementary therapies

Risk factors

Age - dementia affects one in 20 people over 65, one in 10 over 75 and one in five over 85.

Gender - women are more likely to develop Alzheimer's disease than men.

Other medical conditions may put people at a higher risk, such as multiple sclerosis, Huntington's disease and HIV.

Lifestyle changes to help you reduce the risk of developing dementia

Don't smoke

Drink alcohol in moderation

Reduce your intake of salt and saturated fat

Exercise regularly

Eat plenty of fruit and vegetables

Eat oily fish once a week

Contacts

If you are worried about yourself, or somebody you know, useful contacts include;

Your own GP

The Alzheimer's Society: York Branch 01904 430020, Selby Branch 01757 213037

www.alzheimers.co.uk

City of York Council 01904 613161 (switchboard)

Customer Support & Advice - George Hudson Street 01904 554141

Older Citizens Advocacy 01904 676200

Carers Centre 01904 655945

Age Concern 01904 627995

Updated: 09:17 Friday, July 09, 2004