King's College London

Did you know that the number of people dying with dementia is expected to more than double by 2040? Despite this, the quality of end-of-life care for people with dementia is variable. As I explored in my PhD thesis, people affected by dementia often encounter barriers to accessing end-of-life care in the community, and instead, endure unplanned and unwanted trips to hospital.

This inequity must change, but it’s a hard sell: dying with dementia is not a topic that people often discuss. Understandably, national priorities include finding a cure and improving diagnosis rates. Meanwhile, we are accruing strong evidence that many people with dementia do not die well. Up to 20% of their last six months of life is spent in a hospital bed, and for many, this is where they die. So, as we continue to search for a cure and increase diagnostic rates, the numbers of people dying with dementia continue to grow – as does the moral and economic imperative for change.

I wanted to find a way to share the evidence with those who have the authority and power to influence the way public services are run. I was motivated to do this based on my experience on the King’s Parliamentary Research Internship (KPRI), which I did during my PhD (2021-22). During the internship, I attended several Parliamentary receptions organised by different charities, and was often given a policy brief. These policy briefs had been developed by the charities, which summarised their recent research in an accessible format for policymakers. It seemed like the perfect way for me to share the evidence on dementia end-of-life care.

Taking inspiration from the KPRI

Inspired by this, I applied for and was awarded Faculty seedcorn funding to produce my own policy brief. Using NIHR guidance on how to write policy briefs, I led the development of, ‘A Right to be Heard’, a 28-page policy brief calling for better palliative and end-of-life care for people affected by dementia. With support and contributions of peers and senior clinical academics, I led the synthesis of up-to-date evidence into fours calls to action, each with two targeted recommendations (see below).

A Right to be Heard: Four calls to action with recommendations.

1. Prioritise dementia as a life-limiting condition: clinical training and public health messaging must prioritise dementia as a life-limiting condition to facilitate equitable access to care.
2. Ensure equitable access to integrated palliative dementia care: an integrated palliative care approach should be adopted, and commissioners must consider dementia in fulfilling their statutory duty to respond to local palliative care needs.
3. Optimise investment in community and primary care closer to home: primary, community and urgent care services must be locally integrated through greater investment and joint workforce planning.
4. Invest in palliative dementia care research: routinely collected data needs expansion and dementia care research needs greater priority and investment.

You’ve got a policy brief – now what?

It was not enough to develop a policy brief; I needed to place it in the hands of policymakers and explain to them why this mattered to people affected by dementia, why it mattered to wider society, and why it mattered to them. Therefore, I decided to replicate what I had seen during the internship: I organised a Parliamentary reception to launch the brief and create the opportunity to push the agenda for change among policymakers.

My KPRI mentor and the Faculty Impact Lead provided me with useful advice during the process of organising the reception. The Baroness Watkins of Tavistock, for whom I had worked during my internship, has academic and clinical experience of supporting people with dementia, and very kindly hosted the reception and identified key people to invite. This was invaluable – and only made possible through the KPRI.

We arranged the reception to coincide with Dementia Action Week as a window of opportunity to maximise the potential for stakeholder involvement. Using a stakeholder map, I sent out invitations and, on the day, we welcomed over 40 people including Peers, MPs and representatives from NHS England, the Department of Health and Social Care and different health and social care related charities, think tanks, Royal Colleges and local Integrated Care Boards.

I enrolled the valued support of peer and senior colleagues, including co-authors of the policy brief. The Baroness Watkins of Tavistock delivered opening remarks, my PhD supervisor introduced the policy brief and evidence base, and a public representative, who had been involved in my PhD, provided a speech on her experiences as a dementia caregiver. These speeches set the scene for engaged discussion over afternoon tea, with guests not only speaking of the need for better palliative and end-of-life care for people affected by dementia but, importantly, how better care could be achieved in practice.

Ripples, not waves.

The reception was a great success with positive feedback from those who attended. Though, I realised a one-off statement event was insufficient to bring about change. From then until now, I and co-authors have worked steadily to disseminate the policy brief, sharing the brief with relevant All-Party Parliamentary Groups, national clinical networks, community groups, local commissioners, and patient and public networks. I arranged for the brief to be added to the Houses of Parliament library catalogues, and successfully applied for the brief to be included on the WHO Global Dementia Observatory Knowledge Exchange Platform. Crucially, The Baroness Watkins of Tavistock alerted Peers to the policy brief during a debate in the House of Lords, which is now published in Hansard.

Thanks to the KPRI and the support of colleagues, I have had a glimpse into the process of policy engagement and research impact. It was hard but rewarding work – and does not stop here. I hope to continue to seek and create opportunities to engage policymakers, joining forces with others as a coalition for change, with the long-term goal of informing better, fairer end-of-life care for people affected by dementia.

Further details

If you would like to know more about the policy brief, reception, or the King’s Parliamentary Research Internship, please feel free to email me: Lesley.Williamson@kcl.ac.uk.

You can also read more about my experience of the internship in this blog: Mind the Gap: Bringing evidence and policy closer with the King’s Parliamentary Research internship.

Acknowledgements: I would like to thank everyone involved in the brief and the reception. I am especially grateful to those who supported the cause throughout planning and delivery, including The Baroness Watkins of Tavistock, Ms Mair Graham, Professor Katherine Sleeman, Professor Catherine Evans, Professor Liz Sampson, Dr Emel Yorganci, Dr Javiera Leniz, Ms Laura Yoshimoto-Turpin and Dr Harriet Boulding.