Dementia Priority Setting Partnership

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Alzheimer's Society led a Dementia Priority Setting Partnership with the James Lind Alliance to identify some of the priorities for dementia research.

Through extensive engagement with people with dementia and their carers, health and social care practitioners, and organisations that represent these groups, over 4,000 questions on the prevention, diagnosis, treatment and care of dementia have been whittled down to a top 10 list.

Alzheimer's Society's Research programme remains committed to funding high quality research into the cause, cure, care and prevention of dementia. We undertook this exercise to focus and stimulate research to improve the quality of life of people living with dementia, and we are currently considering how we and other funders may take these questions forward.

The final top 10 priorities

  1. What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings?
  2. How can the best ways to care for people with dementia, including results from research findings, be effectively disseminated and implemented into care practice?
  3. What is the impact of an early diagnosis of dementia and how can primary care support a more effective route to diagnosis?
  4. What non-pharmacological and/or pharmacological (drug) interventions are most effective for managing challenging behaviour in people with dementia?
  5. What is the best way to care for people with dementia in a hospital setting when they have acute health care needs? 
  6. What are the most effective ways to encourage people with dementia to eat, drink and maintain nutritional intake?
  7. What are the most effective ways of supporting carers of people with dementia living at home?
  8. What is the best way to care for people with advanced dementia (with or without other illnesses) at the end of life?
  9. When is the optimal time to move a person with dementia into a care home setting and how can the standard of care be improved?
  10. What are the most effective design features for producing dementia friendly environments at both the housing and neighbourhood levels?

Process for setting the priorities

A survey was open for a period of four months in April 2012, which gave people the opportunity to submit the questions about dementia that they wanted to see answered through research. Over 1,500 people completed the survey and over 4,000 questions about dementia were submitted covering the prevention, diagnosis, treatment and care of dementia.

The next stage of the process involved sorting through the questions, combining duplicates or similar questions, and checking them against existing research evidence to ensure they had not already been answered. Alzheimer's Society awarded the University of Cambridge a grant to lead this work with the support of the steering group.

This reduced the list of questions to 146, which were sent out to partner organisations to prioritise. Each organisation was asked to identify their top 10 questions in order of preference from the list. The 25 questions that received the highest number of votes from partner organisations were taken to a final workshop on 12 June 2013.

The workshop was attended by representatives from partner organisations. Only people with dementia and their carers or health and social care practitioners were eligible to participate. After a long day of discussions, debate and compromise the final top 10 questions were agreed.

Why is this important?

By 2015 there will be 850,000 people with dementia in the UK; this is expected to rise to over 1 million by 2025. Dementia has a huge impact on a person's whole life, as well as their families, carers and the community. In addition to the substantial personal cost of the condition, dementia costs the UK economy an estimated £26 billion per year, more than cancer and heart disease combined. Despite this, dementia research is severely underfunded. It is therefore essential that future research is prioritised according to the most critical issues in the prevention, diagnosis, treatment and care of the condition.

This list of questions has been prioritised by people with dementia, their carers and health and social care practitioners. This will help to ensure that researchers investigate what is important to the whole community, resulting in the biggest impact on people's lives.

For more information

If you would like more information or you have any questions about the partnership please contact research@alzheimers.org.uk

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