By Alan Gillies

Recent research has suggested that the rate of growth in the prevalence of dementia may be levelling out as the general health of the population increases. While such findings are encouraging, commentators have pointed out that increasing rates of obesity and diabetes, as well as the fact that people are living longer, means they have to be treated with caution.

Whether we face a continuing increase, a stabilisation or a decline in dementia, for those who are affected it will continue to have a devastating impact. And this includes not just the person with dementia, but also their loved ones and those who care for them.

A recent enquiry to our Ask a Researcher service asked for our help on this very question. As a social worker needing to understand the broader impacts of the disease on the family in order to be to provide appropriate help and support, the enquirer came to us looking for the available research evidence on the impacts of dementia on those caring for them. Our researcher was able to provide a comprehensive roundup of the current literature, highlighting the variety of issues facing carers of those with dementia.

Carers’ working lives

Not all the issues covered were ones that might be immediately obvious, like the practicalities of caring and the emotional impact of seeing a loved one affected. For example, one piece of research we were able to flag up examined the impact on carers’ working lives and workplace relationships.

Over half of respondents to a survey (53%) said that their work had been negatively affected due to their caring responsibilities. The survey highlighted the pressure on those in the prime of their working life, most often women, who are combining care for an older relative, often at a distance, with a range of other family responsibilities.

Minority ethnic carers

We also highlighted research on the way dementia can affect different sectors of the population. One recent study we identified, examined how the migration experiences and life histories of Sikhs living in Wolverhampton impacted on their experiences of caring for a family member with dementia and the barriers to accessing services.

It found that, rather than cultural differences, it was migrants’ experiences and perceptions of social exclusion, their perceived and actual social position as migrants, that affected the ways in which they accessed services.

Communicating with family members who have dementia

As well as drawing together a range of research on carers’ experiences and difficulties, we were able to include examples of initiatives, such as Talking Mats, which can help to improve the experience of caring for a loved one with dementia.

Talking Mats are a simple communication tool, developed at the University of Stirling, to help people with communication difficulties to express their views. It uses a simple system of picture symbols that allow people to indicate their feelings about various options relating to a topic.

Research for the Joseph Rowntree Foundation looked at their use for people with dementia and their family carers. It found that, unexpectedly, although the people with dementia and the family carers both felt more involved in discussions using Talking Mats, the increased feeling of involvement was significantly higher for the carers. Carers repeatedly reported feeling ‘listened to’ by the person with dementia and felt that their loved one could actually ‘see’ their point of view. It found that many family carers said they often choose not to say something that is going to inflame a situation, so instead they say nothing at all. Whereas the Talking Mats tool allowed them time and space to have their say, and helped to organise and structure their conversation with the person with dementia for whom they cared.

Our response to the enquiry provided our member with a speedy and concise roundup of the currently available literature on the issues and difficulties facing those who provide vital care for people with dementia.

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Our popular Ask a Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

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