The personal is political - women's experiences of dementia
Dementia is an issue that disproportionally affects women.
This project has addressed the hidden stories behind the statistics - the experiences of women affected by dementia.
We have been working with women affected by dementia to enable them to tell their stories.
What we found:
- There is often resistance to talking about dementia as a women's issue.
- More and different research is needed. In particular, women's experiences are missing from research.
- Women's experiences of dementia reflect women's experiences in society they are affected by stereotypes of women, their lack of a voice in decision-making, and the low value placed on 'feminine' attributes such as kindness and empathy.
- Service provision needs to reflect the needs, skills and attributes of women with dementia, female carers and the female care workforce. Being person-centred means taking gender into account: gender-blind policy and services are unhelpful for both women and men.
- The way women experience dementia is affected by their gender, but also by many other factors including education, ethnicity, sexuality, class, age, and disability.
- Special consideration needs to be given to issues that are specific to women for example the large number of women with dementia who live alone.
- Many women's identities are tied into their caring roles. Although this can be a positive thing, it can also lead to unhelpful expectations around women taking on caring responsibilities. Women can also experience caring as a duty.
- Organisations and individuals can think differently about dementia if they consider women as a marginalised majority.
Download the reports from the JRF website: https://www.jrf.org.uk/report/dementia-through-eyes-women
ResourcesWe have produced a booklet about these experiences - which you can down load from this website. Go to Women's Experiences of Dementia
The voices of the women involved in this project are initiating a debate and opening up discussions around the lives of women affected by dementia.
Download a PDF file of a paper produced by some women with dementia as part of the Dementia Engagement and Empowerment Project (DEEP) - Women with dementia: Our Voices (Adobe PDF, 288KB)
We have also produced a review of the published work.
Download a PDF of the paper entitled Women and Dementia: All But Forgotten? A literature review (Adobe PDF, 268KB)
In June 2015, Alzheimer's Disease International published a report global research review around women and dementia.
Their recommendations are:
- All countries need to understand the current and predicted prevalence and acknowledge that dementia disproportionately affects women. Accordingly, policy makers should review what support is currently available and what is required to meet future needs.
- There is also a need for skilled care competencies for health and care staff and professionals working with people living with dementia with complex needs and co-morbidities.
- In all regions people should be able to access appropriate information and support in place, enabling women across the world to continue to provide care, and to feel cared for themselves
Read the full report at the ADI website -
Statistics from the UK
In March 2015, Alzheimer's Research UK published a report which said that dementia has not only become the leading cause of death among British women but that women are far more likely to end up as carers of those with dementia than men.
Two thirds of the people living with dementia in the UK are women and many research papers state that most family carers and those paid to care for people with dementia are also women.
The report 'Women and Dementia: A Marginalised Majority' can be downloaded from the Alzheimer's Research UK website -
Wipe out Alzheimer's - led by women
In the USA, Maria Shriver, journalist, Alzheimer's advocate and the Former First Lady of California, has started a new movement calling on women's brains to help wipe out Alzheimer's with the Alzheimer's Association. She wants you to JOIN her movement here: http://wipeoutalzheimers.org/ and is looking for brave women already leading the way to beat Alzheimer's to join her Big Wall of Empowerment here: http://wipeoutalzheimers.org/big-wall.html.
This project is funded by Joseph Rowntree Foundation as part of their Dementia Without Walls programme.
It is run jointly by Innovations in Dementia CIC and the Social Policy Research Unit at the University of York.