The newly published Report Women and Dementia provides the first official recognition that dementia disproportionately affects women. This imbalance arises as a result of it being women who do most of the caring (both as family members and as paid staff), and also because age is the major risk factor and more women live longer than men. While in truth I can’t think of why it has taken so long for this thinking to be documented, I welcome the report in finally drawing much needed attention to this marked gender imbalance.
From relative obscurity half a century ago, with the Prime Minister making it a priority at the G7/8 meeting in 2013, dementia has really shot up the national agenda. The successful Dementia Friends and Dementia Friendly Communities campaigns led by the Alzheimer’s Society have raised awareness of the need for all of us to support those affected by this dreadful condition. Women and Dementia builds further on this work. From research collected on women living with dementia and the families and paid carers involved in their care, the Report recognises the significant role that women play around dementia and highlights the importance not only of increased care and support but of such care and support being gender focused.
In my mind women have always played a significant role around dementia. While there has been little research specifically on this, fortunately various women have written books about their experiences. One of the first that came my way ten years ago was Christine Bryden’s Dancing with Dementia. She set the scene so well with the words “Nothing about us without us”. The Mental Capacity Act 2005, introduced later that year, made it a legal necessity to include the person with dementia in all decision-making however trivial. For me Bryden’s words said it all – it seems a shame that it took legislation to enforce common sense and respect.
Throughout the world women are expected to look after elderly parents and other relatives. This is not only the case in lower and middle income countries but also true of industrially developed countries. Many years ago, a study carried out by Enid Levin, in which I took part, highlighted the stresses involved in caring for someone with dementia – stresses that resulted in many carers experiencing pathological anxiety and depression. Because women are used to multi-tasking with child bearing, domestic work and cooking and, arguably have better social skills and support networks than men, it has been taken for granted they will undertake most of the caring for people with dementia. And do so without complaining and often with remarkably little help and support. Women are not good, or at least not as good as men, at finding others to help them or realising that sometimes they need a break. As the film Still Alice illustrated, men in the position of carers are less likely than women to feel they have to give up their careers to undertake caring tasks.
As a result women need much greater support and information about the condition and resources they can tap and they also need to be given the skills to access the help that is available in their communities. It is crucial for there to be recognition that all carers need individualised specialist help from dementia experts on an ongoing basis if they are to perform their roles as effectively as possible.
I don’t see myself as a feminist, but I’m well aware this could be seen as yet another situation in which women’s contribution is just taken for granted. Would care staff be so badly paid if most of them were men? I think not. Perhaps society should realise they only stand to benefit if the status of women in caring roles both in families and in the paid workforce is much more adequately rewarded financially and in status than is the case at the present time. The Report, very appropriately produced by Alzheimer Disease International, draws attention to the need for the world to sit up and pay attention to the plight of women everywhere so that their contribution is no longer taken for granted but is appreciated for the valuable resource it is.
Dr Nori Graham
Non-executive Director, Red & Yellow Care
Vice President, Alzheimer’s Society
Vice President, Alzheimer’s Disease International