Values, Equalities, Rights and Dementia

Laura Cole is Senior Research Associate at the Social Care Workforce Research Unit, King’s College London. (929 words)

It is often overlooked that two thirds of people with dementia are women, and caring is often viewed as a woman’s role; both in the family and the workplace. These seemingly obvious points were highlighted at the second* event of the VERDe Network, ‘Venus, Mars and Dementia – Gender perspectives on dementia’ held on 2 June 2016 in central London. Everyone who  attended was keen to explore the equalities dimensions arising from gender differences that affect the services, policies and practitioners that aim to support people with dementia and their carers.

VERDe is an acronym for Values, Equalities, Rights and Dementia, and is part of the legacy from the ‘Dementia without Walls’ programme. The VERDe Network aims to think and do things differently in policy and practice for people with dementia. It is coordinated by the Mental Health Foundation, and funded by the Joseph Rowntree Foundation. This event was additionally supported by Innovations in Dementia, and co-funded by the Life Changes Trust.

The day’s proceedings were co-chaired by Toby Williamson (Head of Development and Later Life) from the Mental Health Foundation and Joy Watson, a Dementia Champion; both experienced and charismatic Chairs who grabbed our attention with their light-hearted quips and personal asides.

The first topic of the day was ‘Women and Dementia’ facilitated by Ming Ho (scriptwriter and carer), Nada Savitch (Innovations in Dementia) and Philly Hare (Innovations in Dementia on secondment from The Joseph Rowntree Foundation), and Joy Watson.

Ming presented her experience of caring for her mother who had dementia. She highlighted the importance of identity, relationships and shared memories, for her and her mother. She has expressed her thoughts and experiences on the subject in a personal blog. Ming reflected on the fact that kindness and empathy are not attributes that are typically valued in society, but that are critical for the care of people with dementia.

Joy explained how she lives well with dementia. She advocates for choice and control in all aspects of her life but particularly around services and support networks. As a younger person with dementia, Joy expressed the need for personalised activities and support groups. She has made advance decisions and reflected on gender and relational issues when she receives personal care from family members or friends.

Nada presented The Dementia Engagement and Empowerment Project (DEEP), which has been talking to women with dementia over time to find out more about their key concerns. She highlighted the importance of emotions for this group, and how women often talked about themselves in relation to other people and the roles that they held. Throughout this talk Philly asked Joy for her perspectives, comparing the findings from DEEP with Joy’s own experiences.

Dr Simon Evans, Head of Research at the Association of Dementia Studies, University of Worcester, spoke about the findings of a new report by his colleague Prof Dawn Brooker and colleagues. This report Women and Dementia: A global research review, published by Alzheimer’s Disease International, calls  for more longitudinal studies capturing women’s experiences over time. It points to the need for research to be undertaken in low and middle-income countries, where the responsibility of caring for a person with dementia falls even more on women than in higher income countries.

The afternoon sessions were led by three main presenters, Anna Buchanan from Life Changes Trust, Keith Oliver a Dementia Envoy and Alzheimer’s Society Ambassador, and Tony Watson from Dementia Havens.

Anna presented her research from Scotland. Reassuring us that people with dementia living in Scotland are very similar to people with dementia in England, Anna argued that the healthcare system in Scotland offers better support for people with dementia compared to other parts of the UK, primarily because it offers one year post-diagnosis support. However, further work needs to be done, especially around the areas of preserving personhood, identity, and relationships. In addition, gender perspectives in dementia need to move away from binary gender categories (male or female) and consider other populations, such as people who identify as transgender.

‘Men’s perspectives on dementia’ were movingly expressed by Keith and Tony. Keith has a diagnosis of dementia and explained how this affects his daily life. Now retired, he reflected on his career as a Head Teacher and how he discovered that his love for the job had influenced one of his students to become a doctor; this former pupil now provides Keith with care and support through his dementia journey. Tony is Joy’s husband and spoke about his experiences as a spouse carer. He explained how at the time of Joy’s diagnosis he was very angry. Now, the majority of his friends live with dementia and his world has become consumed by dementia; Tony reflected on how this had both positive and negative impacts on his life.

In additions to these presentations, we all took part in lively roundtable discussions about ‘key issues involving gender and dementia’ and ‘examples of positive practice and experiences’. Notes from the roundtable discussions will be available shortly on the VERDe website.

Laura Cole is a Senior Research Associate at the Social Care Workforce Research Unit, King’s College London. She is working on a NIHR School for Social Care Research funded project, Optimal Timing, which is exploring whether there is a ‘best time’ to move to a care home.

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*The first VERDe event was held in Scotland in January 2016; details of this event can be found on the VERDe website.