A roadmap to advance dementia research and care by 2025

treasure-map-1850653_1280

People with dementia experience difficulties with a whole range of symptoms, from managing their finances (Giebel et al., 2018), to problems with their memory (Tchakoute et al., 2017) and changes in their behaviour (Breitve et al., 2018). To help people with dementia and their carers to live as good a life as possible, it is important to understand how things can be improved throughout the care pathway, from prevention to diagnosis, all the way through to intervention and care.

Whilst there is a lot of dementia research out there, trying to find a cure and helping improving the lives of people currently living with dementia, it is really important to set priorities about where to focus next. When we set priorities, we can address those issues that are considered to be most important by researchers, but also by people providing care, and most importantly, by people living with dementia and their carers.

Back in 2015, the then Prime Minister published his ‘Challenge on dementia 2020’. This has definitely helped raise awareness about dementia. Just take a look at Iceland (the shop, not the country) for example, displaying dementia friendly signs drawn by Tony Husband.

In this blog, I am looking at a recently published paper by Pickett and colleagues (2018) which sets out a roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.

Alzheimer's Society facilitated a taskforce of leading UK clinicians, researchers, people with dementia and carers to develop goals and recommendations to advance dementia research.

Alzheimer’s Society facilitated a taskforce of leading UK clinicians, researchers, people with dementia and carers to develop goals and recommendations to advance dementia research.

Methods

A taskforce was set up by the Alzheimer’s Society, who invited a wide range of leading experts and emerging leaders in their fields within dementia, including backgrounds from gerontology, psychology, health economics, primary care, public health, social care, as well as lived experience.

In order to develop priorities for dementia research and care, the taskforce attended three face-to-face meetings, five teleconferences, and were all interviewed once each. In addition, once they had created a draft of the goals and recommendations, they distributed these online for feedback by mostly researchers, as well as people living with dementia and carers. In total, 60 people provided feedback on these goals and recommendations.

Once the priorities and recommendations were finalised, the taskforce met with additional stakeholders and people with dementia and carers at a half-day workshop. At the event, small group discussions were held to develop an action plan to effectively translate these goals into practice.

The roadmap for dementia research and care was designed by a taskforce with a broad range of experiences and heavily involved members of the public

The roadmap for dementia research and care was designed by a taskforce with a broad range of experiences and heavily involved members of the public

Results

The taskforce identified five goals that should be addressed until 2025. However, it was acknowledged that the translation of evidence and turning it around into practical applications might take longer.

  1. “Prevent future cases of dementia through increasing knowledge of risk and protective factors”. This includes conducting epidemiological studies, developing and testing interventions, and better communication to increase awareness.
  2. “Maximise the benefits to people living with dementia and their families when seeking and receiving a diagnosis of dementia”. This would involve better understanding of regional and socio-economic differences in diagnosis and service usage/quality, models of post-diagnostic support provision, and pathways of care.
  3. “Improving quality of life for people affected by dementia, by promoting functional capabilities and independence, while preventing and treating negative consensus of dementia”. In order to improve the quality of life, it was suggested to be important to promote everyday functioning, improve social interaction, housing layouts, and strongly involve the public in co-producing research.
  4. “Enable the dementia workforce to improve practice and skills by increasing evidence to inform changes in practice and culture”, which could be achieved by transfer of knowledge.
  5. “Optimise the quality and inclusivity of health and social care systems that support people affected by dementia”. In order to do so, it is important to understand differences in care services, innovative models of health and social care, and support people and carers to access services better.
The taskforce developed 5 goals and 30 recommendations, all put together into a 10-point action plan.

The taskforce developed 5 goals and 30 recommendations, all put together into a 10-point action plan.

Conclusions

It appears like the taskforce went through a thorough process of identifying these five goals, by having a variety of experts and members of the public involved in co-producing these goals. As a dementia researcher myself, we are aware that many of these issues need to be addressed. Having them brought up through a methodologically sound investigation however helps to have a solid document to refer to. What’s more, it will hopefully raise awareness outside our bubble of dementia researchers and clinicians, and highlight to anyone how much more really needs to be done to ultimately help improve the lives of people living with dementia and their carers.

Strengths and limitations

One of the strengths of this roadmap is the thorough process of identifying the goals and recommendations by involving a wide range of experts and people having direct lived experience of the condition. This ensures that different opinions were captured.

Not a limitation of the study as such, but recommending changes by 2025 may appear too enthusiastic. Considering the time it takes for researchers to develop funding proposals, and studies generally taking between 3 to 5 years, it may be necessary to extend the timeline until 2028 or 2030 for example. It is possible that some studies might not find significant results, so that other studies might need to follow.

Overall a thorough development of this roadmap, but it may be considering a too-short time frame.

Overall a thorough development of this roadmap, but it may be considering a too-short time frame.

Implications for practice

The taskforce has come up with a 10-point action plan, to help put the five identified goals into action:

10-point action plan

  1. Increasing funding available for research
  2. Streamlining set-up processes of research
  3. Advancing public and patient involvement
  4. Advancing research methods
  5. Enabling research to be more inclusive
  6. Initiatives to support study recruitment
  7. Increasing data storage and reanalysis
  8. Increase involvement of professional stakeholders in research
  9. Support knowledge exchange and research practices that facilitate uptake and implementation of findings
  10. Creating effective researcher networks

These 10 actions seem valuable and are important to put into practice. For example, the National Institute for Health Research has already set up a new researcher network for early career researchers, called the ‘Dementia Researcher’. The network provides regular updates on topics that are relevant for us early career researchers, such as information on submitting grant proposals, but it also offers the opportunity to network outside the realms of social media or conferences.

However, so much more needs to be done to advance dementia research, as the taskforce has described. It is still a long way to improve dementia care, but working up and summarising the important next tasks is a first step in this direction. Let’s hope that this action plan will result in more positive changes than previous ones!

Conflicts of interest

None.

Links

Primary paper

Pickett J, Bird C, Ballard C, et al. (2018). A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025. International Journal of Geriatric Psychiatry, doi: 10.1002/gps.4868

Other references

Breitve MH, Brønnick K, Chwiszczuk LJ, Hynninen MJ, Aarsland D, Rongve A. (2018) Apathy is associated with faster global cognitive decline and early nursing home admission in dementia with Lewy bodies. Alzheimer’s Research & Therapy 2018 10:83

Giebel CM, Flanagan E, Sutcliffe C. (2018) Finance management in dementia: Managing bills and taxes matters. International Psychogeriatrics, doi: 10.1017/S1041610218000820 [Abstract]

Tchakoute CT, Sainani KL, Henderson VW, for the Raloxifene in Alzheimer’s Disease Investigators. (2017) Semantic Memory in the Clinical Progression of Alzheimer Disease. Cognitive And Behavioral Neurology, 30 (3) September 2017, pp. 81-89(9) [Abstract]

Photo credits

Share on Facebook Tweet this on Twitter Share on LinkedIn Share on Google+
Mark as read
Create a personal elf note about this blog
Profile photo of Clarissa Giebel

Clarissa Giebel

Clarissa is currently a Research Fellow at the University of Liverpool. Her research focuses on enabling people with dementia staying at home for as long as possible, whilst addressing potential health inequalities in accessing the right care. She is currently leading the first Covid-19 dementia study in the UK, exploring the effects of social service closures on the lives of people with dementia and unpaid carers. In her role as postdoctoral research associate at the NIHR ARC NWC, Clarissa is the Principal Investigator on a number of dementia and health inequalities projects. This includes a European Alzheimer's Society funded project into health inequalities in dementia care access in England and the Netherlands, also collecting Young Onset dementia specific data in Australia. Further funded international collaborations in dementia care include Colombia and Chile. She is also involved in the North West Coast Household Health Survey, looking at health inequalities in health service usage across the population. In addition, Clarissa is leading a care home collaboration, where she works jointly with colleagues from the Netherlands on implementing changes to a local Liverpool-based care home and developing a UK Dementia Village. Additional collaborations and projects include working with the Brain Charity evaluating social support groups for people with dementia, and with the Liverpool House of Memories to look into evaluating their intervention for family carers of people living with dementia and care professionals, and trying to roll the intervention out to other neighbourhoods.

More posts - Website

Follow me here –