Into the sunset, with dignity
AMID ALL THE pomp, ceremony and reminiscences surrounding the recent death of Ronald Reagan, not much attention was given to something special the former US president achieved in the last 10 years of his life: he lived out his last years with dignity, despite suffering Alzheimer's disease. This is something few people with Alzheimer's and the other dementias achieve. Many languish for years in institutions, often tied to their beds, or lie at home in soiled clothing and bedclothes because their relatives can't cope with their needs.
According to a survey by the department of psychiatry at the Chinese University of Hong Kong, 45 per cent of Hong Kong people with dementia are living in institutions. With our population rapidly ageing and moderate to severe dementia rates estimated at 4 per cent of people aged 65 or above (about 30,000 people at present), it doesn't take a statistician to work out we are going to run out of nursing home beds very quickly.
'We can't build all the hospitals and care centres needed. We have to train the caregivers,' says the department's head, Professor Helen Chiu Fung-kum.
Which is where the Jockey Club Centre for Positive Ageing comes in. Chiu, who is also the centre's director, feels the solution to quality elderly care lies in this revolutionary project. The centre appears to be a simple low-rise building in the grounds of Sha Tin Hospital. But once inside, it's wide corridors lead to large, bright and airy rooms with groups of elderly people chatting, playing mahjong and other games.
To a casual observer, it seems like a pleasant place to spend the day. But to anyone who has seen inside a typical Hong Kong aged care home, the differences are in the chalk and cheese category. In a standard home, residents suffering dementia are usually bedridden, tied to their beds by 'safety jackets'. If someone with dementia is allowed to walk around , it may well be because his or her condition has not been recognised. Many people, including those looking after the aged, think it is a normal part of ageing to lose your memory and become confused.
Alzheimer's and the other dementias are cruel diseases. The term dementia means out of one's mind - from the Latin 'mens' for mind and 'de' for out. While dementia is a gradual loss of mental functioning, it presents itself in a number of ways. People with dementia suffer loss of memory, loss of concentration, the ability to reason and to recognise places and people. But they may also suffer personality changes. Our ability to control strong emotions such as anger is lost as dementia progresses. Thus some people who were once happy and calm become angry and violent - particularly when frightened or confused. When this happens it's difficult for relatives to deal with this frightening 'stranger'. For many, the solution is to put their relative into an institution.
Chiu says it is against Chinese ethics to place relatives in nursing homes. Ideally, families want to care for their elderly at home. But the strain on family members' time and resources makes many people feel it is impossible.
'Something must be unusual in Hong Kong. It must be the crowded space, attitude, lack of support,' Chiu says.
People caring for relatives with dementia suffer tremendous psychological, as well as physical, strain. A Chinese University survey of people looking after dementia patients in Hong Kong found that 70 per cent were very stressed and felt very depressed about their situation.
'It's not just a physical problem,' Chiu says. 'As the person loses their memory, they lose their memories of their family. So the relatives are also grieving this loss.'
But the professor wants to talk about the solution, not the problem.
Poon Ching-fong, 82, who has had dementia for many years, spent 10 years in an old people's home after her husband's death before her daughter, Leung Kar-mei, was able to bring her home. A psychiatric nurse, Leung was the only one of Poon's children still single and she felt she was the one most able to care for her mother. 'I took her out because it was bad for her in there.'
Leung hired a domestic helper so she could work during the day and spend all her spare time caring for her mother. But the strain proved too much. Her mother was waking three or more times in the night, wanting to go to the toilet and Leung, desperately short of sleep, found it difficult to cope with her work, both at the hospital and at home.
Luckily, she had friends who knew where she could get help. 'My colleagues advised me this is a good place,' she says of the centre. And so it turned out to be. Poon was admitted to the ageing centre for assessment. She was given physiotherapy for knee problems and her medical treatment was changed. She was introduced to a range of activities and now looks forward to joining the 'newspaper discussion group' and singing along to Chinese opera three times a week.
'It really lightens my burden,' Leung says. 'After physiotherapy she walks steadier. I find the professional result is sophisticated.'
While a major reason for setting up the centre - it opened in 2000 - is to act as a model for similar clinics in the rest of Hong Kong, Chiu says they want to do more. There is an urgent need to teach those working with the elderly, the families of people with dementia and the community at large, about the condition so the centre has also been set up as a training, resources and research centre. And that is why it stands out - certainly in Asia, probably in the world.
In many countries dementia services are fragmented because the problem has crept up on the developed world as their societies aged. In the mid-1990s, Hong Kong was castigated for its poor quality dementia care by a leading expert, Professor Edmund Chiu, who trained as a doctor in Hong Kong but made his name in Australia. He told a meeting of caregivers and academics that Hong Kong's system was shameful.
In 1997, the Hong Kong Jockey Club was looking to fund services for elderly people with dementia and asked the Chinese University's department of psychiatry to develop and run a centre able to provide services, training, resources and research under one roof.
On the first floor, there is a short-term care centre set up like a large, comfortable home with roomy bedrooms and en suite bathrooms, an open kitchen and living area. People with dementia can stay here for a few days, even weeks.
This allows their relatives a break so they can go away on business or holidays, or even because the children in the family need to study for exams.
Two other floors contain the day centres: one is for people whose condition is moderate and so are able to take part in activities such as 'reminiscence, reality orientation, sensory stimulation without stress, self-care', and the more traditional 'gardening, sing-along, cookery, art and craft, current issues/newspaper discussion'.
Another day centre - also set up like a comfortable home - is designed for people with behavioural problems. These patients are the most difficult to care for, and it is on this floor that their carers are shown how to create a safe and calm atmosphere. The centre's general manager, Liliane Chan Chui-king, says the carers learn to cope with 'challenging behaviour'.
'You have to use skill, patience, have a sense of humour. You need to find ways to divert them, such as diverting them with favourite foods,' Chan says.
The centre also has a library where carers can borrow books, search the internet, watch tapes (including some in Tagalog - many carers are Filipino domestic helpers) and a seminar room for training courses and lectures.
While this is just a beginning, Helen Chiu says getting the Jockey Club Centre for Positive Ageing up and running means Hong Kong has been able to turn around a once-backward approach to dementia to the point where it has become a leader in the field.
'In Hong Kong we have achieved a lot of milestones. Asian opinion leaders visit the centre to take ideas back home. We've had delegations from Taiwan, Indonesia, Singapore, the mainland. Next week it will be the Koreans.'
But is it all a wonderful dream? The size of the rooms, the standard of care, are all so far removed from the reality of private aged care.
'We know that not many residential homes can copy this exactly,' Chiu says. 'But they can implement ways that can enhance the lives of their residents.'