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Circles of support

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Alison MacadamRecent experience of working on a project with people with dementia, their carers, families and friends has raised some questions and thoughts about how women are affected by dementia – and how this can differ from the experiences of men.

Our 3 year project - Circles of Support for People with Dementia – involved 48 people with dementia and their wider networks, who were supported to use person centred approaches to identify what would help them to live well and work together to achieve goals or changes to help make this happen.

We did not have any preconceptions or targets about the gender of people we were aiming to work with on this project, however despite this 65% of the people with dementia involved were men – which surprised us given that the latest Alzheimer's Society statistics estimate that two thirds of people living with dementia are women.

Although the numbers involved in this project are clearly very small and really cannot be used to draw significant conclusions, the reversal of the proportions involved compared to prevalence did lead us think about some of the factors which may have influenced this. In addition, one of the Dementia Support Workers from a partner organisation involved in the project led a discussion group with some men with dementia, which uncovered some opinions and experiences which are of further interest.

In order to recruit people with dementia to take part in the project, we worked with people, groups and organisations in 4 site areas, specifically looking for people who were interested in working with us to reach goals or make changes in their lives. This prompted us to ask – are there more men who are living with dementia who actively want to make changes and do different things and – if so - why might this be? The outcomes of the group discussion with men – and feedback from some of the men involved individually may help to shed a bit of light on this. There was a strong feeling amongst many of the men that the activities and support available for people with dementia in communities is more suited to (and overwhelmingly used by) women and there are proportionately far fewer opportunities which appeal to men. We did not carry out a similar discussion group with women to gather their views on support and opportunities available to them, therefore it is difficult to reach any conclusions, however this could be an interesting area for further investigation.

Coming at this from another angle, partners (either current or former) and family members were often instrumental in promoting and supporting the involvement of people with dementia in this project. This group was almost entirely female. Whilst this did reflect the situation that the majority of unpaid carers of family members in the UK are women, it did also prompt us to wonder whether women are more likely to take an active role in supporting members of their family who are living with dementia to take part in activities and opportunities within their community? More widely, is it most often women who organise and coordinate any kind of family activity / support / gatherings etc?

These remain interesting questions – and prompt many more, particularly related to the impact of dementia on both women and men. In terms of numbers, dementia clearly affects many more women – both living with it themselves and as the main carer for a partner or family member. However, the experience of how well women and men live with dementia and are being supported to do and achieve the things they want is a more complex picture, but one which is well worth further investigation. In that context, we very much welcome the Women and Dementia project and look forward following its progress.

Alison Macadam, Project Manager, Circles of Support Project, National Development Team for Inclusion

Tags: carers, family, female roles Written 2014-09-30

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