Women affected by dementia have valuable evidence: we ignore it at our peril

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Recently, I have had separate conversations with three women who are utterly passionate about improving the lives of those who care for people living with dementia. They are women who are inspirational, strong and articulate. They are also women who are living on the edge emotionally because of their experiences and who cannot understand why policy makers do not ‘get it’. Thankfully, all three are seeking out ways to channel their emotion into positive action.

One said that despite being involved in several policy-type groups she feels her contribution is reduced to second-rate evidence, a case study to embellish the ‘real’ evidence. What can be more real than living the evidence?

In the past few weeks we have seen the launch of two reports which state that women are disproportionately affected by dementia and that their voices are missing from discussions that determine policy.

‘Dementia – through the eyes of women’* published by the Joseph Rowntree Foundation found, amongst other things, that:

  • there is often a resistance to talking about dementia as a women’s issue;
  • research does not focus as much as it could on the voices, experiences and perceptions of women affected by dementia;
  • there needs to be more attention given to issues specific to women living with dementia;
  • women whose lives are affected by dementia in some way are a marginalised majority.

The Dementia Services Development Centre, Stirling, recently published findings from its ‘Big Ask’* survey which highlighted differences in male and female attitudes to dementia. In its conclusions, the publication states that “there are questions to be asked about the extent to which dementia policy in the UK is dominated by a ‘typically male’ outlook that does not reflect the reality of caring”.

One area in which women affected by dementia are very much impacted is in the working world. The Scottish Commission on Older Women (SCOW)* recently published a report on older women and work which emphasised the disproportionate number of women aged 50 to 64 who provide unpaid care in one context or another. The issue is not just that these women provide care but that they may absorb a disproportionate amount of caring responsibility – caring for older relatives, partners, children and/or grandchildren. Some caring may be manageable, but if caring responsibilities pile up then tipping point is reached and the carer will no longer be able to cope. Similarly, if social or statutory support diminishes the burden becomes too heavy to bear. The result is that something has to ‘give’ and usually that is paid work, which can be hugely detrimental.

Many women over the age of 50 need more flexible working arrangements in order to provide care and earn but this is rarely available – even in those workplaces with shiny awards for investing in the workforce. Requests for flexible working, part-time working or additional leave can be very hard to negotiate when the caring does not involve parenting. All too often women leave the workplace in order to manage caring responsibilities, which can have a devastating effect on their financial situation – both in the present and in the future. Where a woman leaves work to care for a partner with dementia, it is likely that the family unit will have lost two salaries in a relatively short space of time.

Of course, women do not just leave the workplace because they are carers; they may leave because they themselves have dementia. In these circumstances, people diagnosed with dementia report being almost immediately earmarked for ‘the scrap heap’.  A Joseph Rowntree Report* which explores how society should adjust to dementia outlines a number of reasons why workplaces do not accept people living with dementia, ranging from failure to understand the condition through to being directly disrespectful or even abusive.

What is the answer? We can start by really listening to women whose lives are affected day to day, minute to minute, by dementia. They will tell you what needs to change and how it can change. They are not dreamers or seeking Utopia; they just want to ensure that they have some money in their bank account, that they get a good night’s sleep and that their life still has a sense of value, meaning and purpose.

We also need more research into the specific needs of women whose lives are affected by dementia and we must actively include them in policy making. Public policy makers have not made sufficient effort to keep up with the increasingly complex lives of women and the caring demands placed upon them; these women are helping hold our society together and deserve better.

Public sector organisations have a particular role in setting an example in how women affected by dementia should be supported, particularly in light of the Equality Act 2010 (Specific Duties) (Scotland) Regulations 2012. Perhaps the third Dementia Strategy for Scotland should remind public bodies of these duties.

The matters raised in this blog are nothing to do with a feminist perspective – they are a response to statistics that tell us that dementia does disproportionately affect women. Men affected by dementia also have specific dementia-related issues that are lost in the generalities; these too must be explored as we develop a more nuanced narrative about dementia.

We must listen intently to women who are living the evidence today if we are to make changes for generations to come.

Anna Buchanan, Director, People Affected by Dementia Programme

*Find the reports here:

‘Dementia – through the eyes of women’

The Big Ask survey

Older Women and Work – Scottish Commission on Older Women

How can and should UK society adjust to dementia?