Alzheimer’s cause still elusive

Press, 4 May 1988, Page 21

Alzheimer’s cause still elusive

By TED REYNOLDS, of the “New Zealand Herald,” reports on a two-day conference on Alzheimer’s disease he recently attended in Tauranga.

If more and more people live longer and longer, hospitals and social services will soon be swamped with a grey tide of old people whose brains are being devoured by a disease that destroys the sufferers’ personality.

Worse than that, it erodes the lives of victims’ families and can reduce a husband or wife to exhaustion and penury just when they thought all was set for a comfortable retirement.

More than 300 people — families, social workers, rest-home owners, researchers from North America and Britain plus a meagre muster of two family doctors — have just spent two days in Tauranga talking about the causes, treatment, desolation, loneliness and, yes, even the funny side of the growing and incurable sickness called Alzheimer’s disease.

Funny relief in the middle of bleakness came during a discussion group when a cock-sparrow of a man told of the performance he had to go through when his wife was in the early stages of Alzheimer’s.

Her brain had gone to the extent that she could neither plan for the future nor remember anything for more than a minute. But still lodged in her mind was the importance of shopping. So down the supermarket aisles she would go, grabbing loads of stuff the household could never use. As soon as three economy packs of disposable nappies and 4kg of budgie seed hit the bottom of the trolley the husband had to take them out and put them back. His wife seemed unaware, and by the time they reached the checkout her mountain of purchases had shrunk to a fairly rational collection of groceries — “But, gosh, you ought to have seen the looks we got during the whole performance.” While the man tells this story another man nods and grins. “It was just the same with mum,” he says. “She threw it in the trolley and I pulled it out. "Everyone stares at you. And there’s no way you can say to them: ‘l’m not the nut-case, she is.’

“Best thing is to go to a small supermarket where they’ll get to know you, and you explain what the trouble is. People understand.”

Now a social worker gets a laugh for what she calls creative deviousness. Almost always an Alzheimer’s patient is restless, spends hours repeating the same question and follows the healthy spouse with the maddening persistence of a cat that has decided it is being starved. So for the healthy care-giver the biggest blessing is time off from coping with what feels like a 36-hour day. The social worker was helping just such a patient, a woman who used to be a great one for voluntary organisations — but now absolutely refusing to go to day-care. The husband and the social worker dreamed up the trick of telling the patient it was her rostered day to go and supervise the day-care centre. The fib worked. With apron and dustpan at the ready, the patient was eager to go off and run the show.

Early on during the Tauranga conference, though, it became obvious that behind well-mean-ing tricks on patients lay a second conspiracy that keeps families away from early help. jpne of the peop£ who had

travelled from as far afield as Kaitaia and Central Otago put it this way: his father was a lawyer working on his own; his family, seeing him frequently, missed noticing the slow progression of his sickness but his clients knew he was muddling their affairs and deserted him.

Nobody told the family. They were the last to know. This slow, unnoticed slide is part of every Alzheimer’s family’s memory. Yet one united gasp came from 300 throats when Daniel O’Connor, a New Zealand doctor who specialises in old people, told of a conspiracy he has uncovered during research work he is doing at Cambridge in England.

Dr O’Connor said he and his fellow researchers were staggered to discover that doctors commonly know which member of a family is becoming demented. But they seldom mention it to other family members. Likewise,. even when symptoms become unmistakable, families avoid telling the doctor. Doctors excuse themselves by asking: “What could I say?” and families ask: “Yes, but what could the doctor do?”

The tragedy was, said Dr O’Connor, that in England a whole army of helpers is waiting to sweep in and the support a family but in his work in a psycho-geriatric clinic he seldom sees patients until their families have reached the end of their tether.

Talk of armies of helpers rang few bells with Dr O’Connor’s listeners. A man from Hawke’s Bay told this story. He needed a break but a rest-home refused to take his wife because she was incontinent.

“Kick her down the stairs,” he was told at the rest home, “and if you break her legs the hospital will take her.”

They organise things better at Waikanae on the Costa Geriatrica, where old Wellingtonians go to play bridge and golf and nearly a fifth of the people are over 65.

Fred Hirst and Jaswan Singh, Palmerston North old people’s specialists, described a service they have set up to fit the needs of the person who is hurt most by Alzheimer’s — the family member who cares for the patient. At Levin, just up the coast from Waikanae, the Horowhenua Hospital offers a service- that tries to help long before the care-giver has reached crisis point. Once a specialist has diagnosed dementia, the family is offered the chance to join a care-givers’ support group (shoulder to cry on, hand to hold, voice on the telephone) and is invited to let the hospital share the task of caring. Because the disease grows worse and worse, the care-giver might start with having the patient at home for long stretches and grabbing only an

occasional breather when the victim is cared for in hospital. But as the sickness progresses the carer is offered longer and longer breaks from having to nurse the peevish, helpless, incontinent and annoying stranger who was once a husband or wife.

Hirst said the hospital tried to be flexible, to fit the families’ needs rather than force families into a hospital routine; and he used the phrase: “The only service that lets care-givers cope.” Suzanne Bush, a medical student who has been studying how Auckland Alzheimer families manage, said she had been amazed at the number of caregivers (average age 71) who are giving 24-hour nursing without help.

Among the people she talked to, the average carer had supported a demented person for just over five years. One had been looking after a patient for 13 years.

Miss Bush said she knew of “only one proper day-care centre,” at Wesley Hospital in Mount Eden, and she was surprised at how few people knew of it — not that they would necessarily use it if they did know.

Women carers, in particular, she said, were reticient about asking for help. She quoted one 75-year-old: “I don’t ask for any help because I don’t expect any.”

From Christchurch came a variation on the same theme. Gaynor Duff, who is starting a residential care for Presbyterian Support Services, said caregivers seldom know the range of benefits and subsidies available.

Few get pleasure from caring; some feel they have no choice. Those who know help is available are willing to ask only when they reach breaking point. But by then they are too tired to lift the telephone. To raise the gloom the Tauranga Alzheimer’s Disease and Related Disorders Society explained how it runs a loadsharing scheme.

A special curse settles on husbands or wives caring for demented partners. Patients, unaware that they are an endless burden, are unable to say thank you and because they have no awareness of events around them are completely unable to offer companionship or conversation. And because they are less responsible than toddlers the guardian-carer becomes the prisoner of the patient. To help the care-giver the Tauranga society has organised a group of volunteers who call themselves the befrienders. As soon as Paul Goldstraw, the Tauranga Hospital specialist for the elderly, has diagnosed dementia he asks if he can arrange help, which will arrive as an offer from the Tauranga society to have a befriender call regularly. The befriender offers anything either partner needs: sitter, shopping service, work-sharer, an ear to pour troubles into but above all a break in lonely, unremitting labour.

The befriender service telephone line is open 24 hours. Up to this point the conference had flowed sedately with nothing more unseemly than a few potshots during discussion

at the ignorance of family doctors.

One was said to have diagnosed Alzheimer’s disease as “probably some sort of stomach upset.” Another was said to have told a sufferer’s husband: “We must expect this sort of thing at her age.”

Breaking the blandness, Hilary Haines started letting off crackers under the conference’s corporate bottom.

She is assistant director of the Mental Health Foundation and after saying how most cafegivers “cope amazingly well and persist to the point of exhaustion” she moved to the dark topic of granny-bashing and mentioned an American study which showed that 10 per cent of old people being cared for at home are either struck or threatened with violence.

The patients most at risk were disabled old women and their attackers were usually their own children, who were themselves elderly and stressed. Now she turned to institutions, especially “shameful rest homes” where elderly people were virtually sold as part of the business’s goodwill, where proprietors stole residents’ social welfare allowances, where owners forbade entry to visitors, where residents had virtually no rights. Then it was the turn of big company-owned retirement villages with their own rest homes and hospitals attached.

Haines said a friend who went to work in one — which employed only size 10 women, to make the place look nice — found that her first job was to water the milk by 50 per cent. The friend, who was untrained, was ‘always addressed as ‘nurse,’ to give the impression that residents were getting good care.” But when the residents’ nighttime drinks and medicines were taken to their beds, the trays had neither names nor numbers. So it was a lottery whether they were given the right drugs. She told of psychiatric-hospital patients being locked in cupboards and said that when visiting Lake Alice Hospital she found women tied to chairs in locked rooms. Dr Haines asked two women in the body of the conference hall to back her up. This they declined to do. Margaret Guthrie, programme manager for the elderly, disabled and handicapped at Health Department head office, and June Kendrick, Auckland Hospital Board residential social worker, suggested Haines was being too general and was out of touch with improvements.

However bad the worst of institutional care can be, Dr Haines was talking to rest home owners and social workers who had given up their own time to attend and, instead of hissing her, they gave Dr Guthrie and Mrs Kendrick a solid burst of clapping. So Dr Haines said, "Yes, okay,” she had only been talking about the dark underside of the care of the elderly. This produced an equal clatter of claps for her, and she retired with the score 1-all.

The reason for the growing worry about Alzheimer’s is that with a swelling number of people living into their 70s and 80s,

more and more of the population will end their days demented. Between the ages of 65 and 74 less than 5 per cent suffer dementia but after 85 nearly a third have lost their minds.

So the conference hall was silent with hope when Zavin Khatchaturian, director of the American Institute on Ageing’s research programme on Alzheimer’s disease, said that knowledge about the disease was rushing forward at an amazing rate, especially considering that

10 years ago scarcely anything was known.

His private hunch is that in another 10 years the cheers will be going up for the Nobel Prize winner who has cracked the code.

And his own guess is that the winner will find it takes maybe as many as a dozen events throughout a lifetime to cock the trigger that fires the Alzheimer bomb into the brain.

That is, there may be, in fact there seems to be, a genetic fault which could remain dormant

unless it receives a series of jolts — a virus? a poison? a change in the brain’s ability to absorb sugar? — that sends the brain down the road to self-destruction.

Dr Khatchaturian charmed the crowd with jokes in a Reagachev accent, impressed with the way he could talk of having spent SUS3S million in 1984 on Alzheimer’s research and he administered a teaspoonful of hope with the suggestion that researchers have an idea of which direction they should be moving.

And he was kind enough to avoid saying, that when the researchers do learn the cause they will still have to put their heads down and try to find a cure.