Women's experiences of Dementia
In 2015, Alzheimer's Disease International (ADI), commissioned the Association for Dementia Studies to write a report about the evidence base relating to women’s experiences of dementia. The report Women and Dementia: A global research review provides an overview of research from all over the world, highlighting the need for a broader, evidence based approach to female-targeted dementia health programmes in low and middle income countries, where female-led family caring remains the predominant care model. Read a short blog piece about the report.
Dr Karan Jutlla contributed to a Joseph Rowntree Foundation project exploring women's experiences of dementia, which provided a platform to highlight some of the issues faced by South Asian women caring for a family member with dementia, particularly daughters-in-law who quite often remain hidden from services. Read Karan's blog about this.
The majority of people living with the disease and those most at risk of developing dementia are women, and women account for an overwhelming majority of caregivers and health professionals.
ADI estimates that by 2050, 71% of the 135 million people with dementia will live in low and middle income countries (LMICs). The vast majority of these people will be cared for at home, most likely by a female relative. The report outlines the numerous socio-economic and domestic challenges facing women living in LMICs and suggests that women all over the world are much less likely to access help and support than their male counterparts.
The report also highlights the experiences of female caregiving in high income countries, and calls on policy makers to integrate better support systems for lesbian, gay, bisexual, transgender and intersex (LGBTI) females.
In light of this research, ADI is urging all countries to acknowledge and address the disproportionate impact of dementia on women, and to provide tailored information provision and support to better enable women to provide care and to feel cared for themselves.
Professor Dawn Brooker, Director of the Association for Dementia Studies at the University of Worcester, author of the report, commented: “The reality is that more women live with dementia, more women are family carers and more women make up the health and social care workforce. Dementia initiatives will impact on women differently from men and all policy makers need to be aware of this. This report underlines the fact that the increasing prevalence of dementia worldwide will have a significant impact on women worldwide and needs to be recognised at a family, community and policy level.”
Marc Wortmann, Executive Director of Alzheimer’s Disease International, also commented: “This report demonstrates the growing need for governments across the world to acknowledge that the challenges faced by women affected by dementia are part of the wider scope of women’s issues that need addressing, especially in low and middle income countries. We must take action immediately to develop public health and care policies that support women in all aspects of their dementia journey, whether it is as a caregiver or as someone living with dementia themselves.”
The report was supported by grants from Red & Yellow Care and WomenAgainstAlzheimer’s.
Impact on women in the UK
The findings from the report show that the impact of dementia on women in the UK is significant. Two thirds of people with dementia in the UK are women .
Dementia is a challenging and progressive condition that is now the leading cause of death among UK women, accounting for 12.2% (31,850) of deaths in 2013, more than heart disease, stroke or the most common forms of cancer.
Adding to this women are living longer than men so may face not having a partner to care for them. The report identified that in England and Wales, 60% of women aged over 75 are widowed compared to 29% of men.
Women in the UK – whether they are wives, daughters or daughters-in-law – also provide the lion share of informal care for relatives with dementia, which can have a significant impact on their psychological and physical health with a study revealing that 78.5% of carers in the UK admit to feeling ‘under strain’ .
The full report can be found here