The personal is political: women's experiences of dementia

Little is known about the particular experiences of women living with or caring for people with dementia, particularly in respect of issues such as power, control, choice and influence. This project aims to address this gendered gap in evidence by consulting women and using their stories to change the tenor of policy and practice debates and to adjust the focus of future research.

SPRU research team

Professor Gillian Parker

External collaborators

Nada Savitch, Innovations in Dementia
Emily Abbott, Innovations in Dementia
Katherine Ludwin, University of Bradford
Eloise Ross, photographer
Helen Cadbury, writer

Background

Dementia is an issue that disproportionately affects women. Of the estimated 750,000 people with dementia in the UK, two-thirds are women; three-quarters of family caregivers for people with dementia are women; and it is mostly women who deliver paid care to people with dementia. Despite this, women’s voices within the dementia field are relatively quiet. Little is known about the particular experiences of women living with or caring for people with dementia, particularly in respect of issues such as power, control, choice and influence.

This project aims to address this gendered gap in evidence by consulting women and using their stories to change the tenor of policy and practice debates and to adjust the focus of future research.

Methods

The first phase of the project is a brief literature review to inform our work, highlight good practice and identify people who are currently active in thinking about women and dementia. We will use this to develop an initial framework of the issues that women may face.

In the second phase, we will recruit and support 18-20 women (women with dementia, family carers and care workers) to take part in the consultation. Working primarily through a professional storyteller and a photographer, we will record women’s stories in a way that allows them to ‘live on the page’. Based on the stories, we will produce a report, a permanent display and a website to provide firm ground for the influencing activities that we will plan in the third phase.

The third phase will begin with a launch event at the University of York, where we will present the work from phase 2 and issue a ‘call to action’ report. We will invite key stakeholders and individuals to this event. We will also ask five people from across the stakeholder groups and individuals to look at the call to action report and talk at the event about its implications for their own work and lives, about how they plan to take forward the ideas in it.

Policy and practice aims

Throughout the remainder of the project we will work to influence research, practice and policy agendas across health and social care. This will include writing articles for publication, running small meeting and seminars, running awareness raising sessions, as well as using our own networks of influence.

Visit the project website for stories of women's experiences of dementia, and thought-pieces about the roles that women play either having dementia, or caring for those who have it.

Workshop

We hope to begin to change public and personal attitudes and public policy towards women with dementia and female carers, whether paid or unpaid.

We held an event in York on 6th November 2014 to discuss this issue further. Key influencers and decision makers from around the country gathered together to:

Share the thoughts and experiences of women living with dementia, women who are caring for family members with dementia, and the female workforce.
Debate the underlying issues about dementia from a women’s perspective.
Decide what more needs to be done to change attitudes, policy and practice.