If ever there was a vehicle to drive home the devastating personal and downstream effects of dementia, it’s the movie Still Alice.
Lisa Genova, the neuroscientist who wrote the book that inspired it, captures with heartbreaking accuracy its progressive impact.
As memory loss sets in, the central character Alice, who is diagnosed with Alzheimer’s, tells us she has “no control over which yesterdays I keep and which ones get deleted”.
“This disease will not be bargained with. I can’t offer it the names of the US presidents in exchange for the names of my children.”
In a book awash with poignancy, perhaps most touching is Alice’s hope that, as a mother, “the love she had for her daughter was safe from the mayhem of her mind, because it lived in her heart”.
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This mayhem of the mind, brought on by dementia, of which Alzheimer’s disease is the most common form, will become substantially more widespread over the coming decades according to our best estimates, which forecast that the population of people with dementia will increase from an estimated 41,447 in 2006 to 67,493 in 2021 (a 63% increase) and to 140,580 in 2041 (a 240% increase from 2006).
“A dementia tsunami” is how stroke expert and consultant geriatrician, Dr Ronan Collins, describes it.
This “tsunami” poses a significant challenge to our health service, carers, and the public purse. The average cost per person with dementia in Ireland is estimated at €40,500.
Despite the inevitable rise in dementia cases that a growing ageing population and greater life expectancy will bring, Ireland has barely been at the races when it comes to investing in and developing appropriate care.
A report published last January highlighted an alarming deficit of specialist care units for people with dementia in long-term care.
The study, carried out by researchers from the School of Social Work and Social Policy at Trinity College Dublin and the Dementia Services Information and Development Centre, found that of 602 nursing homes surveyed, just 54 (11%) provided dementia specific segregated care in small scale domestic units, even though estimates suggest 63% of long-stay residents have dementia. While the private sector is providing the majority of high-dependency care, it receives the least funding.
The report, An Irish National Survey of Dementia in Long-Term Residential Care, also found there were only 66 respite beds available to cater for the needs of an estimated 30,000 living with dementia in the community. In public nursing homes (HSE-operated), only one third of nursing staff and healthcare attendants had been specially trained in dementia care.
What this research — the first of its kind — and a separate study by Trinity and NUI Galway researchers, entitled Excellence in Dementia Care: A research review for Ireland’s National Dementia Strategy, highlight is that we are entirely reliant on estimates for dementia prevalence rates both in nursing homes and in the community.
The Excellence in Dementia Care report said reliable information on the numbers of people with dementia in long-stay settings, including data on the severity of their condition “is largely absent in Ireland”.
It said community support services for people with dementia and their carers “are under-developed and fragmented” and that “only a small proportion of people with dementia are known to service providers”, coming into contact with health and social services only when a crisis occurs “involving the person with dementia, their carer, or both parties”.
The authors said their calculations suggests there are 26,104 people with dementia currently living at home in the community, most of whom do not have a formal diagnosis and “many of whom are not aware that they have the disease”.
The National Dementia Strategy tells us there is no epidemiological study in Ireland which can be relied on for providing accurate numbers on the prevalence of dementia.
It recommends the HSE take measures “to ensure appropriate recording of dementia in primary care, and the development of practice-based dementia registers”, a no-brainer if we are to develop adequate supports for those with dementia going forward.
We’ve a long way to go to catch up with the likes of Sweden, says Suzanne Cahill, research associate professor at Trinity’s School of Social Work and Social Policy and national director of the Dementia Services Information and Development Centre.
Prof Cahill, who led the research in the two reports mentioned above, believes our lack of clarity around prevalence rates goes back to the “whole invisibility of dementia in our society and people not getting a diagnosis and the stigma of dementia”. This explains, at least partially, why dementia “didn’t really appear on files and in registers” when Dr Cahill’s team was carrying out its research.
When Prof Cahill spoke to the Irish Examiner after the launch of the national survey report last January, she said the reason countries such as Sweden had a better track record in caring for people with dementia was partly because they had “a longer history of having an ageing population” as well as larger numbers of elderly.
“They have close to 20% of their population over the age of 65, whereas we are only at about 11%-12%.”
She said Ireland also seemed to be stuck in the “medical model of care” even though a person with dementia doesn’t always need a lot of medical care; “they need normalisation and occupation,” she said.
In Sweden, the need to keep it normal is recognised in many care homes where people have personalised bedrooms, “surrounded by their own mementos to reinforce their identity and to make them feel comfortable and homely and to improve their quality of life”, Prof Cahill said. Families can often furnish the rooms themselves. “You visit these places and the staff are going around in cheery T-shirts with big name badges.
“There was one place I visited and the resident was allowed take her cat with her. The staff later said that she was very angry about having to go in [to the home] and she became very withdrawn and didn’t want to go outside her room. But the cat would go off wandering down the corridors and this brought her out and made her engage with other people and it was very effective.”
Prof Cahill’s experience in Sweden was that those in specialist dementia care were encouraged to go in and out of the community, “as opposed to being socially marooned”.
Gerry Martin, chief executive of the Alzheimer Society of Ireland, who also spoke at the January launch, said the new dementia strategy was a cause for hope. “I suppose the publication of the strategy doesn’t change anything of itself, but it is an important milestone, and is absolutely welcome in terms of how we plan for dementia care,” he said.
The problem now, as Mental Health Minister Kathleen Lynch pointed out in the Dáil last month, is that while “we as a country are very good at strategy, our weakness is implementation”.
“Developing implementation alongside strategy is key to how we do things in future,” she said.