Informal Dementia Care: Policy and Practice

In this post, I want to tell you more about the project’s investment in policy developments related to ageing and care.

In my earlier contribution to this blog, I mentioned my book The Poetics and Politics of Alzheimer’s Disease Life-Writing (2017). This monograph explores how spouses or adult children of people living with dementia write about the condition as compared to how people with dementia themselves describe it. The urgency with which carers articulate challenges of care, while calling for changes in health and social care policies, left a deep impression on me. As I continued in the field of health humanities scholarship, I increasingly wondered how my work could matter more to those about whom I read, eventually seeking out conversation with a local charity, the Pam Britton Trust for Dementia in Warwickshire.

Tony Britton, the charity’s Founder Trustee, is a retired businessman, who cared for his wife Pam, after she developed Alzheimer’s disease, until her early death in 2013. Taking stock from their experience of poor care in the community, Tony set up the charity in 2014. The charity initiates and funds local support groups and carer events and compiles and produces ‘The Little Pocket Book of Support’, currently on Version 9. This booklet gives carers comprehensive information on local groups and support in their area. Tony is deeply invested in raising awareness of the illness and lobbying for improvement in community care. In 2022, these efforts were recognised with the Queen’s Award for Voluntary Service to the Pam Britton Trust for Dementia.

Tony and I have been working together since 2018 to influence how care support is delivered on a local and countywide level. Funding from UK Research and Innovation for SAACY formalised this interaction in 2020, the Pam Britton Trust for Dementia being one of the project partners on the grant. This funding has given us time and resources for bringing together lived experience and theory: Tony’s perspective as a carer-turned-activist who has navigated local administration to challenge insufficient dementia support for over a decade, and my academic perspective on scientific and cultural understandings of dementia.

Recently, we have produced an analysis of the informal dementia care situation in England and beyond. Published in Dementia: the international journal of social research and practice, the piece critically reflects on contemporary policy issues related to dementia care and proposes actions for change.

Our observations are based on an analysis of literary writing, policy documentation and social research. We find that, since dementia emerged as a major condition in Western countries during the 1980s, support for informal dementia care at a local community level has not been working for most carers. The care experience is characterised by feelings of isolation, exhaustion, and perceived lack of support. This, we observe, is mainly due to an absence of an empowered named support for the carer and an effectively actioned care plan, both backed up by resources available at the local level. Our deliberations centre on the UK context, and England in particular, but similar concerns have surfaced across other European nations, if not most prosperous countries of the Global North.

One of the reasons for a lack of resources seems that 40 years of policy-driven efforts to find a cure have eclipsed attention to care. The Prime Minister’s Challenge on Dementia, for example, calls for ‘high-quality relationship-based care and support for people with dementia’, but allocates only a small fraction of funding to improving care. Add to this budget squeezes at the local level (where responsibility for adult health and social care lies in England), and support for carers increasingly falls to local volunteer groups, who are asked to act like named contacts, although they do not have the necessary resources or healthcare training. A further compounding factor, we find, is a lack of clarity in policy documents, as they do not clearly identify who should be the named contact for carers (they could be the GP, the local council or memory assessment services).

Photo by Javier Allegue Barros on Unsplash

Tony and I agree that, at a macro-level, a deep culture shift is needed that would see the need for care just as much as cure. Or, as the World Health Organization baseline report related to the Decade of Healthy Ageing puts it, healthy ageing will only be achieved if we ‘change how we think, feel and act towards age and ageing’, a perspective echoed also by the UK Ageing Society Grand Challenge. Such a shift would create a commitment to sharing finances more evenly between efforts to transform care and research into cure.

But based on our joint lobbying activities and work at the coalface of care — what could be changed in the meantime? The lived experience of dementia care is shaped by the presence (or not) of two things: a joined-up approach between health and social care and adequate information on available support services, accessible through an empowered named contact. To enhance the lived experience of dementia care, we believe that provision in two areas should become essential to local implementation of the care policy: consistent provision of individual named support and professional care support, as and when required. As long as carers are unable to access specialist services promptly, and care remains fragmented, the lived experience of dementia care will continue to be frustrating and lonely.

Photo by Dominik Lange on Unsplash

If you would like to engage with us on these issues or learn more about how SAACY tries to pioneer collaboration between the academy and the third sector, please write to us by e-mail. For more details on our work, please visit our research project website