Authors of the report found that 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.
The report provides an overview of international 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.
Palliative care is a key approach to improve the quality of life of people living with, and dying from, dementia, and their carers.
Figures in the World Health Organisation and Worldwide Hospice Palliative Care Alliance (WHPCA) Global Atlas on Palliative Care At the End of Life show that over 315,000 people who die of Alzheimer’s disease and other forms of dementia require palliative care at the end of life each year, and this is likely to be a significant underestimation.
There are numerous barriers to the provision of quality palliative care for people with dementia. Palliative care advocates, particularly in countries with less developed health systems, recognise that lack of early diagnosis for people living with dementia is one of the major issues preventing access to treatment and care.
In addition, the need to integrate knowledge, skills and training in hospice and palliative care for those caring for people with dementia is also recognised, particularly in settings where many people living with dementia are in long term care and nursing facilities.
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 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.”
Dr Liz Gwyther, Chair of the WHPCA, said: “This report highlights the disproportionate burden of dementia on women around the world. It is absolutely fundamental that we build health and social care services to support these women and to provide person centred care right through the life course to the end of life.
“There is always something that can be done, even when cure is not possible, and the palliative care approach should be available to all those living with, and dying from, dementia and other life-limiting conditions.”
The report was supported by grants from Red & Yellow Care and WomenAgainstAlzheimer’s.
Read the report and find out more about the work of Alzheimer’s Disease International online.
The WHPCA has published a palliative care and dementia statement, you can access this on the WHPCA website.
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