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Swedish dementia care holds its own in international comparison

25 March 2011

Staffan Karlsson (left) and Connie Lethin (right) interview patients, relatives and staff. Professor

Dementia care in Sweden is good on the whole, in the view of Professor Ingalill Rahm Hallberg, who has compared care in eight different countries. ”The main conclusion is that there is not a lot we can learn from the others; rather we must safeguard what we have built up here.”

Ingalill Rahm Hallberg is aware that relatives bear a lot of the burden of dementia, even in Sweden.

”But when they can’t manage anymore, we have a means-tested, publicly financed system that takes over”, she says.

This is not the case in many other EU countries. Especially in Eastern and Southern Europe, adult children are legally responsible for their parents with dementia, regardless of their own situation. In Estonia, even the grandchildren share the responsibility for their grandparents.

Sometimes daughters and daughters-in-law have to take on the work, sometimes a carer is employed. In Spain, for example, it has become more common to ‘import’ help in the form of women from Colombia, Ecuador and other poor countries. They have no training in how to care for people with dementia and often find themselves in the role of underpaid maids, trapped in the patients’ homes.

Ingalill Rahm Hallberg is no more enthusiastic about the German system, with a ‘care grant’ for each patient. This grant is not means-tested, and as a result, those who have millions in the bank or committed, locally based children receive the same amount as those who have neither money nor relatives. The care grant is also too small: if residential care is needed, the money does not go far.

The comparison of dementia care in different European countries is part of an EU project in which Lund University is responsible for part of the work. The Lund researchers will also do interviews to find out the experiences of patients, relatives and care staff (see related article). The work began last year with the fundamental task of finding a common nomenclature.

“We have to have words for what is offered in the eight countries that form part of the study. One question was what the Swedish term särskilt boende* was in English”, says project manager Staffan Karlsson from the Department of Health Sciences.

Once the glossary was complete, they went on to a make long list of care types. The participating countries then responded as to whether each type of care exists in their country, who receives it and from where. For example, is there any screening programme in primary care to identify people with dementia? Is there an established way of making a diagnosis or does each doctor do it in his or her own way? Can a dementia patient receive medication to slow the disease, and if so, is this only in the first stage of the disease or for the rest of their lives? How much training, advice and support do relatives receive?

On the latter point, all the countries studied fall short. In Sweden there is still a lot of work to do, according to Ingalill Rahm Hallberg.

“We should be better at recognising the important role of the relatives. We mustn’t place more of the burden on them – the municipalities must not reduce their home-help services, even if the economy worsens. On the contrary, we should incorporate an alarm system to provide an early warning when it gets too much for the relatives”, she says.

The EU project RightTimePlaceCare includes Sweden, Germany, the United Kingdom, Estonia, Finland, France, the Netherlands and Spain. It is not by chance that the project is starting now – with an ageing population in Europe it is very pertinent. In Sweden, over 18 per cent of the population are now over 65 and within a decade that figure will rise to 25 per cent. Nonetheless, Sweden is comparatively well off.

”Here, the age distribution has changed so slowly that we have been able to adapt to an increasing proportion of elderly people. In countries such as Italy and Spain, the average age has only risen in recent years. The development is much faster there, while the birth rate is lower. This is paving the way for problems in the future”, says Staffan Karlsson.

- Ingela Björck

Footnote: Särskilt boende is the Swedish care form for elderly people with dementia who can no longer live at home. It is usually a single room in a home with a shared dining room and 24-hour supervision. The English term chosen to describe this is a nursing home.