Forget me not
Chan Shui-nin, 86, used to be a bit of a handful. Often unable to sleep, the Alzheimer's disease sufferer would noisily search through boxes in a storeroom at night, keeping her family awake. Prone to emotional outbursts, she was reluctant to drink water. Her daughter, Lam Sau-ying, 60, and one of eight siblings, says: 'My brother couldn't put up with her and wanted her to leave after a two-day stay.'
But that's changed a lot since she began attending day-care sessions at the Jockey Club Centre for Positive Ageing.
Ten years ago, Chan was diagnosed with Alzheimer's, a degenerative disorder of the brain and the most common cause of dementia.
Sixty per cent of dementia cases are caused solely by Alzheimer's, while other contributing factors include degeneration of blood supply to the brain, brain tumour, head injury, and excessive drug and alcohol use.
According to a 2006 study conducted by the Department of Health and Chinese University's department of psychiatry, there are 63,000 elderly folk who have dementia in the city.
With about 9.3 per cent of people aged 70 or above suffering from the disease, the Census and Statistics Department has projected that there will be 77,000 such people in Hong Kong by 2019.
Alzheimer's sufferers lives are generally shortened by the effects of the disease, but lifespans range from three to 20 years after diagnosis. There is no treatment to stop progression of the disease.
Therapy includes medication to slow down cognitive decline, drugs to lessen symptoms like aggression and sleeplessness, and care-giving by nursing homes and families.
Lam, a former owner of a textiles factory, took early retirement 10 years ago to care for her mother. She loved her mother, but it was an exhausting experience. 'She lost the ability to organise her life. It took a lot of effort to make her do something as easy as drinking water,' says Lam.
But then came Chan's enrolment at the Centre for Positive Ageing.
Launched a decade ago, the centre, in Sha Tin, is the first integrated dementia care institution in the city. It provides day care and residential services to dementia patients and offers training to caregivers.
Tomorrow is World Alzheimer's Day and the centre has rolled out a series of events to raise awareness of the condition, such as a symposium on the disease and its treatment.
Lam says the lessons in caregiving have helped her better communicate with her mother.
'I had no idea what dementia was about before,' she says. 'There are actually many things that a carer can do. How I phrase my questions to her and respond to her words can have big effects on her behaviour.'
The importance of family caregiving in the treatment of dementia patients is supported by research and clinical trials.
A study by Johns Hopkins and Utah State University published in the September 2009 issue of The Journals of Gerontology found that Alzheimer's patients who share a close relationship with care-givers retain their brain function better over time than those without one. Of the 167 pairs of patients and caregivers studied, the progression of the disease was the slowest in patients with close spouses.
The changes observed in these patients were similar to those in patients taking acetylcholinesterase inhibitors, an Alzheimer's drug.
Professor Timothy Kwok Chi-yui, director of the Centre for Positive Ageing, says proper caregiving can delay institutionalisation of patients.
'Despite deterioration in their cognitive functions, [dementia patients] still have emotions,' he says. 'From [their children's] speech tones and expression in their eyes, they know whether they are being taken care of. Those who are hard of hearing and suffer from poor eyesight become isolated. They might engage in eccentric behaviour like yelling or hitting themselves. They do this to confirm their existence. They want people to attend to them. Otherwise, [their whole existence] is blank.'
Given the high level of stress involved in dealing with Alzheimer's patients, counselling and training can make lives easier for both caregivers and patients. A study by New York University School of Medicine, the University of South Florida and the University of Alabama at Birmingham spanning two decades found that counselling and weekly support groups delayed the placement of patients in nursing homes by an average of 557 days.
In the study, published in the November 2006 issue of Neurology, half of 406 caregivers were given advice, support and information by counsellors, and the other half had no contact with counsellors.
Professor June Andrews, director of the Dementia Services Development Centre at the University of Stirling in Scotland, says caregivers should create a calm environment at home and avoid arguments with patients.
'They don't remember things that happen five or 10 minutes ago,' she says. 'If the patient says she hasn't had her lunch and you correct her and say she has eaten already, arguments will occur. You can't bring back their memory by reminding them like children.'
Andrews recommends non-verbal communication such as singing together, playing music to patients, and touch.
At the Centre for Positive Ageing, treatment includes engaging the patients' senses, such as letting them hug dolls or dogs, and providing massage and aromatherapy, says Kwok.
Andrews says a relaxed atmosphere at home can also help. This includes getting rid of unnecessary things so the home doesn't feel cluttered; increasing light to aid ageing eyes; and putting up clear signs or pictures to show where things are. When moving into a new place, try to make everything as familiar as possible.
'Having difficulty in depth perception, [patients] can fall and stumble easily,' says Andrews. 'Having contrasting colours for walls and doors can help. If there's a door you don't want him to go through unaccompanied, paint it the same colour as the walls. For things you want to be noticed, make them obvious. For those you don't, make them disappear.'
A show room at the Centre of Positive Ageing teaches caregivers how to decorate patients' bedrooms. Motion detection sensors, bed rails, electronic pill boxes (with reminders to take medicine on time), a speed-dial telephone with buttons bearing pictures of close relatives all make life easier for Ho Kwok-seung and her Alzheimer's-afflicted mother, Kwok Lau Wai-yiu, 86.
'Technology helps a great deal. It makes me less worried,' says Ho, whose mother is cared for by a maid.
When designing games, case worker Wong Wai-ling, who oversees Kwok and Chan's treatment at the centre, takes into account the history, personality and preferences of patients. Chan, for example, enjoys the personal grooming lessons and mock shopping sessions, where she makes mental calculations and counts spare change to exercise her mind. Chan also enjoys talking about her days as a businesswoman running a boating business, says Wong.
Professor Kwok encourages caregivers to reminisce with patients who, while poor in short-term memory, often can recall things that have happened when they were young.
'They can read photo albums together, organising them in a [chronological] sequence and singling out pictures and jotting down captions for events that mark milestones in each stage of life. Sharing nostalgic moments together makes them happy,' he says.
While there's no research on the relationship between caregiving and longevity, Andrews says those who are looked after well live much longer.
'With fuzzy concepts of time and place, patients don't know where they are and what they are doing. It's like they have fallen into the sea, bobbing up and down and with no one around,' says Professor Kwok. 'If they are well taken care of, even people in a very advanced stage of Alzheimer's can smile.'