We urgently need better services for Alzheimer's patients and carers, writes Dr Muiris Houston, Medical Correspondent
The Republic is facing rapid growth in the percentage of older people in the population. Thanks to improved medical care people are living longer but are then susceptible to diseases such as Alzheimer's dementia, which affects up to 20 per cent of people over the age of 80.
There is an urgent need for improved services to help relieve the burden of the disease on families and carers.
Dementia is a collection of symptoms characterised by a decrease in a person's cognitive ability, the emergence of behavioural disturbances and a loss of independence with an inability to carry out daily tasks. The commonest presenting symptom is a loss of short-term memory. All dementias, including Alzheimer's disease, cause progressive brain damage that slowly destroys a person's mental and physical functions.
Alzheimer's disease is the commonest cause of dementia especially in older people. It accounts for 80 per cent of all cases of dementia in those over 75 years of age. The symptoms of Alzheimer's are outlined in the panel below \.
What happens in the brain when Alzheimer's disease strikes? Individual brain cells wither prematurely and the brain takes on an atrophied appearance. When examined microscopically, protein-filled plaques and tangles of tissue are seen. And there are alterations to the chemicals which act as messengers (neurotransmitters) in a normally functioning brain.
The diagnosis of Alzheimer's is one of exclusion; reversible causes for dementia are tested for and when they have been ruled out a clinical diagnosis of Alzheimer's disease is made.
At present, Alzheimer's affects 33,000 people in the Republic. Its prevalence doubles every five years after the age of 65; 20 per cent of people over 80 have dementia.
With a growing population of older people in the State, it is estimated that more than 52,000 people will suffer from Alzheimer's disease by 2026. The potential impact of the disease on our health services and society is therefore enormous.
The prevalence of Alzheimer's disease is similar across Europe and industrialised nations generally. Where we differ from some of our European neighbours is that the Republic has yet to experience a boom of older people.
The growth in the over 65s will be particularly rapid after 2025 - reaching 24 per cent of the population by 2050.
In an ideal world, we would have treatments that would either prevent Alzheimer's disease or at least stop it in its tracks.
However, at present, the only Alzheimer's specific treatments available are confined to treating symptoms.
A group of drugs called cholinesterase inhibitors help to preserve the levels of neurotransmitters in patients with Alzheimer's. They have been shown to bring about an improvement in cognitive function when prescribed in the early stages of Alzheimer's.
Research is under way into a vaccine for the disease and also to produce drugs that would help stop the progression of Alzheimer's. However, patients do benefit significantly from occupational therapy, physiotherapy and other services available in day-care centres.
As the accompanying patient story illustrates, dementia has the greatest impact on those closest to the person with the disease.
It is estimated that nine out of 10 carers of older people are women who are giving an average of 50 hours a week to their caring role. According to Prof Davis Coakley, professor of geriatric medicine at Trinity College Dublin: "They are a huge resource, which won't continue to be available, due to changes in the number of women working outside the home."
In 1999, the National Council on Ageing and Older People published an Action Plan for Dementia.
It included 33 recommendations, some of which were included in last year's National Health Strategy. Has it made a difference? Mr Maurice O'Connell, chief executive officer of the Alzheimer's Society, says the action plan's biggest achievement has been to "herald a change in attitude to dementia". He singles out two key factors: it has emphasised that dementia care must be person centred rather than disease orientated and it has initiated positive changes at health board level.
An example of the need for dementia services to be more "joined up" in the community is a pilot project undertaken by the South Western Area Health Board. It appointed a dementia case manager who looks after more than 30 patients who are living at home.
She has the ability to "buy in" services for individual patients and, perhaps most importantly, liaises on behalf of the patient and family with hospital consultants, the GP and the public health nurse. As a result the person with dementia is at the centre of care and has a valuable advocate who is in a position to anticipate problems and anticipate long-term care needs.
The project will be formally evaluated by December and the Alzheimer's Society hopes to see it extended to other health boards throughout the State.
Although the society's budget has increased from €381,000 to €3 million in the last three years - and it now operates 24 day-care centres and employes 350 home-care workers - it still needs to raise 40 per cent of its budget by voluntary means.
"We have been funded relatively well by Government and had great support from every health board, but we are still discovering people down boreens and in high-rise flats with dementia who need our services," said Mr O'Connell. Acknowledging the likely budgetary cutbacks next year, he said: "It would be a shame to curtail what is a big support for so many people out there."
Despite the progress made, if the infrastructure for dementia does not continue to develop, our already poor service will become desperate. There are not enough day-care facilities, short-term respite beds are in very short supply and dementia-specific, long-term beds - such as those in the Royal Hospital - are practically non-existent. A recent national survey by the Alzheimer's Society of GPs and consumers bore this out. When asked to highlight the gaps in services, 73 per cent of GPs said there was an urgent need for greater respite care and 54 per cent of the public called for better home-care support for patients with dementia in tandem with improved short-term respite care.
Prof Brian Lawlor, professor of old-age psychiatry at Trinity College Dublin believes earlier diagnosis of dementia is the key. "By coming forward earlier, people who are diagnosed can lead far more productive and happier lives. Families will feel less strain and be able to plan ahead, which ultimately will take the burden of providing long-term respite away, in favour of home-care support with short-term respite care."
For more information, contact the Alzheimer's Society in the Republic: 01-2846616. The Northern Ireland Alzheimer's helpline number is: 028-90664100.