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A looming crisis

The number of dementia patients is expected to rise rapidly, but too many are being drugged up and treated thoughtlessly, say advocates of a new wave of “person-centred” care that is making a big difference for rest-home residents.

Kate Clark can’t quite find the words she’s looking for when asked what she enjoys doing. She searches and searches her mind, but comes up blank.

But for Clark, who is suffering from early-onset Alzheimer’s, the answer does come eventually: “I can still sing. I can still do that fairly well,” she says with a relieved laugh.

A former trade unionist, Clark is no longer the confident, opinionated woman she used to be. She sings at a community choir once a week, but she doesn’t think clearly enough to be the passionate Alzheimer’s patient activist she was a couple of years ago. Sitting on her couch at home in Wellington, she turns repeatedly to her husband, Al Morrison, much like a vulnerable child looking to an adult. Her body tenses with the effort of trying to bridge the gap between my reality and hers.

Clark is one of about 40,000 New Zealanders who suffer from Alzheimer’s disease or other forms of dementia. Now 60, she was struck at 52 with an early-onset form of the condition. The progressively worsening memory loss and confusion can be terrifying for sufferers, and harrowing for families. Those with advanced memory loss often fail to recognise loved ones, or even their own reflection.

As baby boomers continue to age, the number of those with this cruel condition will rapidly increase. By 2026, over 77,000 New Zealanders are expected to have dementia. But there is no clear plan yet for how residential care will expand to meet that need, and a recent government report warns of a looming crisis.

The incidence of dementia is on the rise just as many old beliefs about it are being challenged. For decades, dangerous antipsychotic drugs have often been heavily used to calm some more difficult dementia behaviour, such as agitation, aggression, shouting, wandering, repeated questioning and sleep disturbance.

But now dementia experts and advocates are calling for more compassionate “person-centred” care that tries to resolve behavioural problems by making sufferers more contented. In this new style of care, aggression and agitation are seen as attempts to communicate, clues to be unpicked.

“This is not primarily a medical condition. They suffer from, if you think about it, an intellectual disability. It’s just remembering that people with dementia are humans first,” says Dwayne Crombie, chief executive of Bupa Care Services, the country’s second-biggest chain of rest homes, with over 3000 beds. For the past 18 months, Bupa has moved to make its care more “person-centred”, and aims to cut its antipsychotic drug use by 10%.

The country’s biggest chain of residential care, the 3600-bed Oceania Group, hopes to roll out its own programme of person-centred care, called Contact, next year.

And Presbyterian Support Central’s Brightwater Home in Palmerston North has reduced the percentage of patients using antipsychotics from 25% to 17%.

So, why are antipsychotics falling out of favour, after decades of use as a first-line treatment to manage dementia patients? Doctors and residential-care facilities are reflecting growing international concern over the issue.

In 2004 the UK Committee on the Safety of Medicines warned that these drugs should not be used at all for people with dementia. And in 2005 the US Food and Drug Administration raised concerns about a general increased mortality from their use in managing dementia.

For those with dementia, the side effects of antipsychotics are worse than for other users. They include an increased risk of stroke, problems thinking clearly, problems walking (and thus an increased risk of falls and injuries) and incontinence (and thus a need for increased care).

No one knows exactly how widely dementia drugs are prescribed in New Zealand. A 2008 Hawke’s Bay study found 24% of the elderly in 26 residential care facilities were taking the drugs. In dementia units it was much higher: 60%. When Bupa audited its care facilities in 2009, it found 27% of residents were being prescribed antipsychotics. And in dementia units, at least half were on the drugs.

“My main worry is that we could be delivering much more humane care to these very vulnerable people,” says University of Otago old-age psychiatrist Dr Matthew Croucher. When prescribed in heavy doses, the drugs act as strong tranquillisers. “The use of these drugs in people with dementia for behavioural problems, where the only reason for using them is to sedate someone or tranquillise them heavily, is a stupid treatment. It’s just a band-aid and it’s a terrible thing to do to a human being.”

Even in low doses, the drugs have a calming and tranquillising effect that makes dementia patients easier to manage. “They make people a little less worked up. But again, it’s not very clever. Perhaps there are other ways to feel calm, and other ways not to feel agitated. The big question is why do we think this person is a bit agitated. It might be because they’re bored. You don’t want to give a drug to someone because they’re bored.

“That’s the trouble with people with dementia. They can’t sit you down and tell you what’s going on – they have to tell you in different ways. And one of the biggest things that happens is people tell you with their behaviour.”

Often the drugs are used to cut down what is called “sun-downing” behaviour, the tendency of dementia patients to become agitated and difficult from mid-afternoon, much like toddlers. But Croucher argues this behaviour is not an intrinsic part of dementia. Instead, he thinks it’s more likely that sun-downing happens because, at every rest home, the staff change shifts at 3.00pm. Suddenly, the residents are surrounded by a whole lot of new faces, staff who are preoccupied with the beginning of dinner and evening routines. Often formally organised activities also cease.

It’s easy to see how residents can become unsettled and agitated, and then bounce off others’ agitation. He says some rest homes are now tackling the sun-downing problem by changing their routines. A “diversionary therapist” might start a shift at lunchtime, keep activities going into the afternoon and give residents lots of attention.

We don’t dose toddlers who are losing their rag at the end of the day, says Croucher, so why should we dose those with dementia?

Geriatrician Dr Maree Todd, New Zealand president of the Australia and New Zealand Society for Geriatric Medicine, agrees. Until recently, she says, it was assumed that much of the difficult behaviour shown by those with dementia was a symptom of the degenerative process. Now it is increasingly being realised that behaviours like aggression and agitation are the result of problems with understanding and communicating. Insensitive handling of sufferers by rushing them, bombarding them with questions or exposing them to a busy environment and lots of noise can easily make them agitated.

A 2009 government review in the UK concluded that for most dementia patients, the risks of the antipsychotic drugs outweighed the benefits, and 1% were dying prematurely each year as a result of side effects. Croucher says it’s entirely possible dementia sufferers here are also dying because of the drugs.

At Bupa, Crombie says, there was much soul-searching about the plan to reduce drug use. “The big debate was: are we giving people drugs to chemically control them because we don’t like some of their behaviours, which we find unpleasant and challenging and time-consuming?

“There’s no doubt that non-medication methods do require well-trained, committed staff and sometimes more time, because you then have to do activities or other kinds of things. That debate has been had all over the world.”

The rise in person-centred care for dementia began about a decade ago overseas, and has gained ­popularity here over the past couple of years. At Presbyterian Support Central, Enliven manager Sharon Reilly says the organisation is in a slow transition towards more person-centred care, using an Australian model called the Eden Alternative. This is based on the insight that the “three plagues” that bring suffering to the elderly are loneliness, helplessness and boredom.

In a 10-point accreditation programme, most of Presbyterian Support’s institutions have achieved a ranking of two or three, one has five and some homes have yet to be registered.

Staff are now trained in the idea that “this is the residents’ home and we come into it to assist them”. Those with dementia are encouraged to do more for themselves, which keeps them occupied and makes them feel better about themselves. Institutional routines have diminished.

Residents no longer all have to be up and showered by 11.00am. Instead, they can get up when they want, get dressed when they want and go to bed when they want.

And instead of having breakfast made for them, they help themselves to cereal, butter their own toast and make themselves tea at a breakfast bar. “They sit around the kitchen table and gossip,” says Reilly. The role of kitchen staff is to help.

Residents can also help with folding laundry, which can be a familiar task. There are also animals, vege­table gardens, button collections and knitting supplies.

Some of the dementia units have “man sheds”, with hammers and nails, nuts and bolts, wood, sandpaper – and supervision. Are hammers and nails safe? Not entirely, says Reilly. “We almost had to give permission to ourselves to allow them to take the risk of hurting themselves.”

Some staff found the changes so difficult they left. “It’s a completely different way of caring. You get more time to do things with the residents. You’re more likely these days to see caregivers playing cards with the residents, or helping them do something.

“Residents are less likely to be aggressive or frightened because I think we’re making it a kinder place to be. We are not shoehorning them into routines.”

The changes extend to decor, with a shift to more homely furnishings and less of an institutional look. “We don’t have those plastic-coated seats that are designed so the wee doesn’t soak in.” The new furniture is softer looking, but can still be cleaned easily. Instead of hospital lino, the new look is carpet that doesn’t absorb spills.

Sleeplessness and wandering around in the night, once seen as things that should be treated with drugs, are now seen as okay. If residents want to get up in the middle of the night, they can, just as they would at home. These days, instead of being chastised and sent back to bed, residents will be offered a cup of tea by night staff.

At Bupa’s residential care homes, some staff also quit rather than adopt the person-centred care approach, says Crombie.

Homes are being changed to make them look more welcoming, and increasingly rooms are decorated to remind residents of things that were or are important to them. “I’ve seen butterfly collections, record collections, posters. You’re trying to create an environment that feels more familiar.” Three of the homes have old cars, and familiar props like bus stops.

One simple but important change has been in signposting toilets. Usually they are tucked away discreetly. But those with dementia can forget where they are, or what’s behind that blank door. “Some of our places have bright blue doors and a big toilet sign. Having toilets next to the lounge is another design strategy, because that might reduce your chances of incontinence. There’s a huge amount of anxiety that goes with wetting yourself. They find it intensely unpleasant.”

Dementia units also need to be designed so every part of the building doesn’t look the same, as residents can get lost.

Is person-centred care more expensive? It’s a delicate equation, says Crombie, as 60% of Bupa’s costs are staff wages. He is introducing Toyota-style “lean thinking” to work out how staff can use their time more effectively. “We reckon we could move five to 10% of our staff time out of low-value to high-value activities such as talking to residents.”

However, Oceania CEO Geoff Hipkins says person-centred care is costly, and dementia care is already woefully underfunded. The Government pays providers about $118 a week for every residential bed, $150 for a dementia bed and $200 for a hospital-care bed. He says dementia funding should be much closer to hospital-level care, “given the high level of almost one-on-one care that’s required.

“We know demand is going to skyrocket in the very near future. But at the moment when I look at conversion of facilities to dementia, it just doesn’t make economic sense. Where is the incentive to provide better dementia care?”

Last September, a review by accounting firm Grant Thornton quantified the looming crisis in dementia beds, and in residential care generally. The report predicts dementia bed numbers will need to rise somewhere between 78% and 110% by 2026 to deal with the extra demand and to replace ageing facilities. It also says current returns provide no incentives for operators to make the necessary capital investment. The Government has yet to respond to the report.

Alzheimer’s New Zealand is pushing for more home-based care as the solution to the coming wave of dementia. Currently those caring for loved ones at home with dementia get minimal support.

For Clark, the thing she wants most is to not be alone. Morrison, director-general of the Department of Conservation, can afford to employ carers to support her during the day; otherwise he would have to stopping working to stay home to look after her. Friends also take turns doing things with her.

What’s the most important thing for Clark now? “Being able to do the things I usually do, every day, going out with people I know well, those sorts of things,” she says, turning to Morrison to check she’s making sense. What does a bad day look like? “Being on my own is big now for me.” Why is that unpleasant? “Nowadays there’s not much for me to do, so I’m just sitting here; I can’t do much more. You don’t want to be on your own any more because you think something might happen, and it’s not the right thing, and you don’t know how to get home.”

Does Clark feel at some stage she will have to go into a residential home? “I suppose I will have to. Mmm. It’s not something I want to do at all,” she says, looking at Morrison again with sadness and anxiety on her face. What is her fear?

“Because you just want to be at your own place. Because that’s the place you like. You don’t want to go into something that you’ve never been inside before.”