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It’s time to to insist on proper care for people with dementia

We need services that enhance the life of those living with memory problems

Home care packages in much of the Irish health system have effectively been frozen since just after the election in March.

This week’s column comes from Tampere in Finland, host to the Nordic Gerontology Congress, the largest and best scientific meeting on ageing in Europe. Known as “Red Tampere” for its central role in the short and savage Finnish civil war in 1918, the city is a model for preserving, adapting and capitalising on a Victorian industrial heritage. The large brick buildings are a foil to the adjoining lakes and a range of beautiful buildings, including a stunning art nouveau fire station.

The academic and research infrastructure of the Nordic countries has taken a lead in European terms in promoting research into ageing. The theme of the meeting, Good Ageing – Better Society, reflects an increasing awareness that population ageing, far from being a threat, is valuable addition to our society and a cause for celebration.

One highlight was an overview of the Finnish Finger study in which a package of preventive measures were intensively applied to older people with risk factors for developing dementia, but not affected by the illness. They included nutritional guidance, exercise, brain training and social activity, management of metabolic and vascular risk factors.

Both groups performed better on memory tests at 24 months – a mixture of training and placebo effects were used for the control group – but those in the intervention group performed even better. Although this is not the same as preventing dementia, it is encouraging that brain function can be improved in this way, and suggests a way forward for prevention strategies for dementia.

However, a danger of over-emphasising prevention and medication treatment of dementia might be to fail to focus on how to optimise life for those living with dementia. Much of the popular literature in the media portrays a “go” or “no-go” pattern for life with and without dementia, thereby exacerbating the stigma of life with dementia.

While no one wishes for any illness, both clinical experience and repeated studies show that those living with dementia want as full a life as possible and report preserved quality of life for themselves. The key challenge is more often the distress of those close to them, who often have to make significant adjustments from the changes in ways of relating and disruption of previous inter-personal patterns.

The congress reported on many efforts to improve this network of support and communication, from the use of leisure and arts activities to re-thinking how care and activities in nursing homes are structured. An Irish researcher in the Open University, Geraldine Boyle, typified this with a presentation on emotional pathways to communication.

Lack of supports

A particularly interesting study was on continuing working with memory difficulties, an inspiring approach recognising that there can be long periods of mild symptoms for the majority of those affected, a theme echoed in my own area of research in driving and dementia.

The vibrancy and imaginative approaches displayed prompted me to think about some unhappy experiences in Ireland around dementia care, and the absence of a forceful public outcry about the lack of enabling supports and services for those living with dementia.

The most striking has been the effective freezing of home care packages in much of the Irish health system since just after the election in March, without a clear and honest statement from the HSE. Does open disclosure not apply to managers as well as other healthcare professionals? Apart from the obvious knock-on effect on hospital services, including ED trolley waits if the exit from the hospital is delayed, home care packages support to a great extent people living with dementia, and often other disabilities, and their absence causes great suffering and frustration.

On another front, I have been dismayed to see plans for a number of nursing homes in Ireland which fail to embrace the homely and domestic environment, increasingly the norm in Nordic countries.

Instead of quadrangles comprising corridors of bedrooms with large day-rooms, we should be building distinct sub-units of no more than 10 bedrooms, with associated small sittingrooms and private spaces, and kitchen and dining areas which facilitate dignity and independence. These in turn could lead into more open shared public spaces and gardens for activities and leisure.

Understanding that memory problems and dementia will form a part of our common fate should rouse us from our passivity to shout out for a framework of support and care which liberates and enhances living with dementia.

Des O’Neill is a geriatrician and co-chairman of the Medical and Health Humanities Initiative.