'The disease that's robbing my husband of himself'

IT was one of those moments to treasure. Carole Woodcock was sitting with her husband Ian when one of their favourite songs came on the radio in the Darlington care home where he lives.

"A Phil Collins record we used to dance to came on. Ian started tapping his foot and said 'are you dancing?', says Carole, who is still only 50. "I said 'yes, I'm dancing', and for two minutes we danced to this record and then it was over and it went back to how it was before. You get these moments which are like a window to the past. They don't come very often these days and you have to really treasure them."

Ian, who only turned 60 last month, is one of a growing number of middle aged people to develop Alzheimer's Disease, a cruel condition which robs individuals of their memories, turns life into a living hell and devastates the lives of their families.

While people with Alzheimer's retreat into a confused, frightening world of their own, there are occasional moments of lucidity when the person they used to be comes back.

Carole was fortunate that the local branch of the Darlington and District Alzheimer's Society asked a sympathetic care home manager to apply for a variation in its licence to allow under 65s while there are hundreds of elderly dementia sufferers in care homes around the region, Ian is one of just a handful of under 65s who have been given a place.

Later this month the Alzheimer's Society will invite health and social care professionals to a meeting at the Central Hall in Darlington to raise awareness about the needs of younger Alzheimer's sufferers and their families.

For Carole, who was under terrible strain after caring for Ian on her own for several years, having Ian admitted to the Springfield Care Home in Darlington was a lifeline.

"When he was at home, some days he would just sit and cry from the moment he woke up to the moment he went to bed at night," recalls Carole.

Several times a week she makes the 20-minute walk to the care home to see her husband. Sometimes he is having a bad day and hardly notices she is there, but sometimes the spark returns for a fleeting instant.

Carole is hugely grateful for the support of the local Alzheimer's Society but feels angry that people in her position seem to have nowhere to turn.

Dementia services in England are almost exclusively geared to over 65s, despite increasing numbers of younger people, even some in their 40s, who are developing this form of dementia.

In younger people who get Alzheimer's, the condition is often more aggressive and can shorten lives. "What is really annoying is that the Government doesn't recognise Alzheimer's as a terminal illness," says Carol. "Until they do, services will not improve for anyone suffering a dementia-type illness."

In Ian's case, the first danger signs that something was amiss came in 2001. Ian, who used to work at Darchem near Stockton, became very insistent about contacting a workmate. The only problem is that he couldn't remember the man's surname or where he lived, only his first name.

"He went to the local post office to get a phone book but he didn't know any details, apart from him being called Dave," says Carole. "The girl in the post office couldn't help him and he came back in floods of tears."

The family GP suspected depression and signed him off work for six months. But while anti-depressive medication lightened Ian's mood, it didn't help his increasing memory problems so Carole began keeping a detailed diary to try to keep abreast of the changes in Ian's memory.

Alzheimer's doesn't just affect memories, it also attacks reasoning powers as well. "The ability to reason slowly goes, they get all mixed up," she adds.

Ian gradually became unable to do things that he had taken for granted. He could no longer add up the points after filling in his football Pools coupon at the weekend. He couldn't cope with DIY any more. He stopped going to watch Darlington with his son, because he couldn't concentrate on the game and would wander off.

"He used to sit in the dining room and say 'I'm going barmy, aren't I?' and I would tell him not to worry," says Carole.

Increasingly concerned, the family doctor referred Ian to a psychiatrist, who referred Ian on to a psychologist who was very interested in the details of Carole's diary. Suspecting an early case of dementia, the psychologist recommended that Ian should be seen by a neurologist to undergo tests.

"He had brain scans with CT and MRI scanners at the Memorial in Darlington. The first time it didn't show up anything but the second time it showed up changes in the frontal lobes of the brain," Carole recalls.

Already fearing the worst, Carole worried what impact a diagnosis of Alzheimer's would have on her husband. "His mother lived with us and she had old age-related dementia. Ian saw his mother die with dementia and he never wanted to go like that."

Ian was present when the neurologist confirmed Carole's worst fears but he had deteriorated so much by then that he didn't realise what the doctor was saying. "He heard the word but he didn't take it in. I didn't want to discuss it too much because he was frightened about it," she says.

Reeling from the shock of the diagnosis, Carole can remember the specialist saying something about medication to slow down the progress of the disease but the family GP said they couldn't prescribe it. There was no automatic referral back to a specialist so nothing happened for ages.

Carole gritted her teeth and got on with their lives, as the man she knew and loved gradually faded away. "Every day there were more things that he couldn't do. He was always a smart man but he stopped being able to have a shower or dress himself," she says.

Then Carole heard about a local carers' group and went along to a meeting where she met consultant psychiatrist Dr Andy Phipps from West Park mental health hospital in Darlington. After approaching her GP for referral to Dr Phipps, he agreed to take Ian on as a patient and has been very supportive.

Former nursing sister Eileen Shepherd is a full-time Family Support Worker for the charity. It was her idea to hold the November 11 conference.

Apart from helping Carole on a day-to-day basis, liaising with local district nurse services and other statutory services, Eileen was there to offer practical support in times of particularly bad news.

Carole also wants to acknowledge the work of Sarah Hogg, a nurse at West Park hospital in Darlington, who runs the support group with Eileen.

Sarah and Eileen are planning further events to include social and fun time for carers and the people they care for.

"Homes are not normally allowed to take people who are aged under 65," says Eileen, who asked care home manager Jean Reaney, who runs Springfield, a care home owned by Four Seasons Health Care, whether she could help.

The Darlington Alzheimer's branch also runs a monthly support group for people caring for under-65s with dementia. It meets at the new West Park hospital at 1.30pm on the fourth Wednesday of every month.

Jean, who runs a home which looks after 43 elderly people with various forms of dementia, is keen to increase provision for under 65s with Alzheimer's.

"When I started here a couple of social workers asked me whether I took under 65s. There is no provision," says Jean, who approached the Commission for Social Care Inspections regulator for permission to vary the home's licence.

"This lady was at the end of her tether. When she comes to see her husband now, it is quality time. They can go for a walk or to the pub and she knows he is safe and looked after," says Jean.

Carole will be a speaker at the event on November 11 and hopes that her experiences might help other people in similar circumstances.

Watching Carole holding hands with Ian, it is hard not be moved by their plight.

"If someone has cancer or some other physical disease, you can still talk to them about their memories," she says. "To lose your mind, you lose who you are. We have been robbed of so much."

* To contact the Darlington branch of the Alzheimer's Society or for information about next week's meeting ring 01325 267555 or visit www.alzheimers.org.uk for information about the national charity.