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. However, 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. 

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 of the King’s Parliamentary Research Internship (KPRI), which I completed in 2021-22 alongside my PhD. During the internship, I attended several Parliamentary receptions organised by different charities to promote the findings of their most recent projects. At these receptions, I was often given a policy brief that summarised the project findings in an accessible format, with specific policy recommendations. This 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 the support and contributions of peers and senior clinical academics, the evidence was synthesised into four 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.

I had worked for the Baroness Watkins of Tavistock during my internship. With academic and clinical experience of supporting people with dementia, the Baroness Watkins of Tavistock very kindly agreed to host the reception. Meanwhile, my KPRI mentor and the Faculty Impact Lead gave me useful advice and guidance during the process of organising the reception.

I arranged the reception to coincide with Dementia Action Week, as a window of opportunity to maximise the potential for stakeholder involvement. Guided by stakeholder mapping, I sent out the 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, charities, think tanks, Royal Colleges and local Integrated Care Boards.

I enlisted the invaluable 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 care partner to someone with dementia. 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, there has been concerted effort to disseminate the policy brief with relevant All-Party Parliamentary Groups, national clinical networks, community groups, local commissioners, and patient and public networks. The brief has been added to the Houses of Parliament library catalogues, and the WHO Global Dementia Observatory Knowledge Exchange Platform, following peer review. 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.

This unique experience in policy engagement is thanks to the KPRI and valued support of colleagues, for which I am extremely grateful. Although challenging at times, the experience has been hugely rewarding. It has inspired me to seek and create further opportunities to engage policymakers and continue to build a coalition of support, working towards 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.