Living with Alzheimer's

 

Alzheimer's disease is not confined to older people, as Liam Kennedy and his family found out when he developed symptoms two years ago, reports Sylvia Thompson

It started with Liam Kennedy, a secondary-school teacher, phoning to check if his wife, Catherine, needed any messages before he came home, "even though I had told him what I needed earlier that day". Then, says Catherine: "I noticed our bank account was overdrawn, which was unusual for us. And the phone was cut off, because the bill wasn't paid."

Kennedy's increasing forgetfulness turned out to be the beginning of Alzheimer's disease. "Sometimes, I feel like I'm waiting for a time bomb to go off," says Catherine (35), sitting across from her husband, who remains quiet. A healthy-looking 45-year-old who enjoys sailing and walking, he was diagnosed with the progressive degenerative brain disease last year.

Kennedy had known something was wrong when he could no longer remember well enough to teach his woodwork and building-construction classes at the Christian Brothers school in Nenagh, Co Tipperary. He gave up teaching in January 2002.

They had gone to their GP and, later, to a neurologist in Galway, but test results were inconclusive. Then, after a second series of blood and genetic tests, last August, Kennedy was diagnosed with early-onset Alzheimer's disease. Knowledge of the premature deaths of his father, at 52, and his grandfather, at 54, both of whom had severe memory problems, completed the equation. Kennedy had a rare form of familial Alzheimer's disease.

Meanwhile, the Kennedy family - Liam and Catherine have two children, Colin (10) and Niamh (7) - set about realising their long-term ambition of building a house on their 30-acre farm near the north Tipperary village of Portroe. They moved in in November.

"The house has saved our lives," says Catherine of their new home, which has tranquil views of Lough Derg and the surrounding countryside. Just before they moved in she gave up her part-time job as an office clerk, to look after her husband.

"The children are coping well, but you remember things they say. Niamh said the other day: 'I'm getting like Daddy. I got two spellings wrong today.' And it hit Colin hard when Liam had to give up driving, in October, because it meant he couldn't take him swimming or to pitch-and-putt any longer."

Nor is Kennedy able to help the children with their homework, a task that had been second nature to him as a teacher. Instead, three times a day he takes one of the three drugs prescribed for Alzheimer's.

"Routine is very important for Liam. Every morning he has his shower and his breakfast and helps clean the house. And we go for a walk most days. I don't look too far ahead," says Catherine. "We're enjoying our retirement, aren't we, Liam?" she laughs.

"Liam sleeps well, has a good appetite and is fit and healthy. We're not the type of couple who will sit down and cry about it. You have to look on the bright side of it. Otherwise you'd go mad."

Catherine has recently joined the Alzheimer Society of Ireland's support group in Nenagh. "I find I talk to one women whose husband was diagnosed at 58, but generally the people you meet have a parent or parent-in-law with Alzheimer's. People have to realise that it isn't always old people who have Alzheimer's."

Prof Des O'Neill, the society's medical director and a geriatrician at the Adelaide & Meath Hospital, in Tallaght, Co Dublin, says: "The life expectancy for someone with early-onset Alzheimer's disease is somewhere between five and 15 years."

The theme of the society's awareness campaign this year is hope and recognition, with an emphasis on the importance of early diagnosis. Almost 80 per cent of GPs surveyed recently felt families are not coming to them early enough with symptoms. Another recent study found that two-thirds of patients with early-onset dementia have not been diagnosed. For a third of patients who are diagnosed, it is estimated that diagnosis was made between three and a half and five and a half years after onset.

"Early diagnosis is important for several reasons. First off, those in the early stages of Alzheimer's can still make decisions and, crucially, take out what's called the enduring power of attorney, in which they nominate someone to look after their affairs when their memory gets worse," says Prof O'Neill. "Secondly, medication works best in the early stages, and treatment for depression, which one in four dementia patients have, can also improve quality of life. Thirdly, early diagnosis helps sufferers and their families to learn to adapt to the illness better. Sometimes with a late diagnosis, families have developed a dysfunctional dynamic, which wouldn't have happened if they had been able to plan ahead."

The Alzheimer Society of Ireland is working towards setting up the first support groups for sufferers themselves. "The aim is to give patients in the early stages of dementia an opportunity to speak about their issues and get support with their diagnosis in peer groups led by a trained facilitator," says Maurice O'Connell, the society's chief executive. It also hopes to develop its day- and respite-care facilities in Limerick, Cork and Dublin this year.

How Alzheimer's changes you

• Alzheimer's disease is named after Alois Alzheimer, a German neuropathologist who in 1907 reported changes in the brain of a 51-year-old woman who had died after five years of progressively worsening dementia.

There is no known cause for Alzheimer's, although genes on chromosomes 14, 19 and 21 have been linked to its onset in those under 60.

Drug therapy temporarily improves symptoms for about 40 per cent of patients.

Alzheimer's disease has three broad stages. The first is characterised by general forgetfulness. During the second stage, there is a gradual increase in the severity of memory loss, and patients may seem confused and begin to invent to fill the

gaps.

The final stage brings severe disorientation and confusion, sometimes with hallucinations and paranoid delusions. Eventually, patients need full-time professional care.

In Ireland, about 33,000 people suffer from dementia, 60 per cent of whom have been diagnosed with Alzheimer's disease.

The Alzheimer Lyons Tea Day, the Alzheimer Society of Ireland's annual fund-raising campaign, is on Thursday, May 8th. If you would like to register as a tea-day host, call the society on its freephone number, 1800-202455, for its free Lyons pack

The Alzheimer Society of Ireland's helpline number is 1800-341341.