Diversity and dementia

 

The Association for Dementia Studies works across a broad spectrum of areas to ensure that all people living with dementia are able to live well. Supporting people to live well requires us all to recognise individual needs based on life history, identity and experiences.

Our portfolio of work includes or has included research on and education about on Women and Dementia, Black, Asian and Minority Ethnic (BAME) communities, LGBT and cultural competence.

Teaching resources

The Association for Dementia Studies was awarded funding by the DH Workforce Advisory Group to develop resources for use to increase cultural competence in in the domiciliary care workforce. The result is an education package that can be used by anyone with responsibility for education and quality in organisations that provide care for people living with dementia in their own homes.

ADS education courses

ADS delivers cultural competency training as part of all of our courses. The intended learning outcomes are for participants to:

  • Understand the needs and experiences of people from minority ethnic communities in relation to dementia and caring for a person with dementia;
  • Consider how their organisation and personal practice meets the needs of such people;
  • Identify and discuss some of the ways in which their organisation and personal practice can offer culturally competent care via a person-centred approach.

To find out more about our education courses please see our Dementia Education and Development pages.

Research activities

ADS was commissioned by the Royal Surgical Aids Society to investigate new and innovative ways of improving the quality of life for people living with dementia and their families at home. The charity wished to achieve this through the design and delivery of a project or service model which could provide support to carers and families of people living with dementia at home to ensure that they can maintain their independence and dignity, and remain in their own homes and within their community for as long as possible. Recognising the importance of person-centred care, the charity sought to ensure that the developed service was culturally inclusive. 

Seminars and Knowledge Transfer

ESRC Seminar Series: Age, Race and Ethnicity

ADS partnered with Brunel University and Swansea University to deliver six seminars focusing on issues concerned with age, race and ethnicity. The objective of this seminar series was to develop, explore, theorise and codify our knowledge and understandings of the experiences of later life amongst minority communities in the UK. They brought together academics from a range of disciplines, policy makers, health and social care practitioners, commissioners of services, and those working in the voluntary and statutory sectors to share their perspectives, the theoretical and methodological approaches they have been developing, and their empirical findings and policy/practice implications of their research. For more information visit the ESRC Seminar Series page.

Connecting Communities Project

The Alzheimer’s Society was awarded funding from the Department of Health for an innovative three-year pilot project to engage volunteers from Black, Asian and Minority Ethnic (BAME) communities to design and deliver awareness raising activities appropriate for diverse communities across eight London boroughs. The Connecting Communities Project aimed to increase:

  • Engagement with BAME communities and community specific dementia health care providers
  • Dialogue between BAME communities and the Alzheimer's Society and wider stakeholders
  • Dementia awareness and knowledge of dementia care services in BAME communities
  • Understanding amongst professional groups of dementia specific issues faced by BAME groups

The Association for Dementia Studies was commissioned to evaluate the impact of the project and assess the extent to which the project met the expected outcomes. The final project report is available here and there is also a project summary.

If you would like further information about this project please contact Jennifer Bray at j.bray@worc.ac.uk or visit the Alzheimer's Society website.

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