Improving hospital treatment for people with dementia

Lead Investigator: Dr Elizabeth Sampson
Institution: University College London
Grant type: Project
Duration: 26 months
Amount: £112,206 
Start date: February 2011
Completion date: April 2013

Scientific Title: The Impact of acute Hospitalisation on People with Dementia: The Behaviour and Pain (BepAid) Study

What was the project, and what did the researchers do?

Over a year, at least a quarter of people with dementia will have at least one unplanned hospital admission. Once in hospital, people with dementia have longer stays and are at greater risk of accidents. The quality of care is often poor.

The term 'behavioural and psychological symptoms of dementia' (BPSD) covers a range of symptoms including agitation, hallucinations and depression.  Worsening of BPSD is a common result of hospital admission for people with dementia.

Pain is poorly detected and undertreated in people with dementia. This may occur because they are unable to express that they are in pain.

There have been no UK studies on how common BPSD are in people with dementia on acute medical wards and how these impact on patients, carers, and the NHS (in terms of costs). There has been no work on how well pain in people with dementia is detected in this setting.

Dr Sampson and her research team studied people with dementia who had unplanned medical admissions and measured how commonly BPSD and pain occurred. They collected information on how these affect a range of outcomes including length of hospital stay and inappropriate prescription of sedative 'antipsychotic' drugs. They also investigated whether under-treatment of pain causes BPSD.

What were the key results, and how will this help in the fight against dementia?

The researchers recruited 230 people with dementia to the project. They found that three-quarters of people with dementia in the acute hospital had behavioural problems at some time, mainly agitation and aggression.

BPSD were associated with adverse events whilst in hospital (i.e. falls) and poorer quality of acute hospital care. They did not find any links between BPSD and the length or cost of the hospital admission.

They found that staff are still using sedative and neuroleptic drugs to manage these and did not consider other behavioural techniques such as reassurance or diversion in a logical or structured way. The use of these drugs was associated with higher mortality.

The team found that only half of the study participants could use the FACES pain scale (a pain tool commonly used in the NHS). When they observed people with dementia on the acute hospital ward using another tool, designed for use in people with poor memory who may not be able to communicate, they found that over one-third had pain during a care task or on movement. Staff appeared to have difficulties in detecting this and providing appropriate pain medicine. 

There was a link between BPSD (particularly aggression and anxiety) and pain. This suggests that these behavioural problems may be a way in which people with dementia communicate that they are in pain.

Carers of people with dementia who had been admitted to hospital were keen to assist with care. They usually visited for six times or more during the admission and had particular concerns about the quality of care, especially with regards to eating and drinking. Despite this most carers who answered the survey felt their relative or friend had been treated with respect and dignity; although these results must be interpreted with caution as only 57 per cent of carers responded to the questionnaire. 

This study provides important evidence that may drive improvements in care. We now know where to focus training for acute hospital staff; on how to better manage BPSD, particularly agitation and aggression. They need support and guidance in using non-drug management strategies such as re-orientation or complimentary therapies.

Hospital staff need more training in identifying and treating pain in people with dementia and improvements in this may reduce behavioural problems and the distress these cause to people with dementia, their carers, and hospital staff. 

What happened next? Future work and additional grants:

Dr Elizabeth Sampson (PI): This project led to me being a co-applicant on a successful NIHR project grant 'The detection and management of pain in patients with dementia in acute care settings: development of a decision tool'.

Nicola White (Project Research assistant): Is remaining in clinical research and doing a PhD on prognostic markers in older people admitted to hospitals.

Kathryn Lord (Project Research assistant): She has decided that she wishes to have a career in dementia research. She was re-deployed on to our Marie Curie Programme grant on palliative care for people with dementia. She is moving onto a PhD at UCL on supporting early diagnosis in dementia.

Professor Steven Morris, Dr Louise Jones: remain working in clinical research at UCL

Karen Harrison-Dening: now appointed as head of UK Admiral Nursing, doing a PhD on advance care planning in dementia

Sharon Scott: worked on the project as senior clinical research nurse (post funded through Marie Curie UK departmental core funding). Now working on our Marie Curie Programme grant on palliative care for people with dementia.

Dr Martin Blanchard: Retired

How were people told about the results? Conferences and publications

Publication:

Scott S, Jones L, Blanchard MR, Sampson EL. Study Protocol: The Behaviour and Pain in Dementia Study (BePAID). BMC Geriatr. 2011 Oct 17;11:61. (Appendix 1)

Posters and abstracts:

  1. ICAD, Paris, July 2011. Elizabeth Sampson, Kathryn Lord, Nicola White, Martin Blanchard, Sharon Scott, Louise Jones. 'The Impact of Acute Hospitalisation on People with Dementia: The Behaviour and Pain (BePaiD) Study'.
  2. Alzheimer's Society Research Conference, October 2011 Kathryn Lord, Nicola White, Martin Blanchard, Sharon Scott, Louise Jones, Elizabeth Sampson. 'The Impact of Acute Hospitalisation on People with Dementia: The Behaviour and Pain (BePaiD) Study'
  3. European Union Pain and Impaired Cognition Winter School, University of Bamberg, March 2012 Kathryn Lord, Nicola White, Martin Blanchard, Sharon Scott, Louise Jones, Elizabeth Sampson . 'The impact of acute hospitalisation of people with dementia: The Behaviour and Pain Study (BePaiD)'.
  4. Royal College of Nursing Research Conference, January 2012. Sharon Scott.  'The Impact of Acute Hospitalisation on People with Dementia: The Behaviour and Pain (BePaiD) Study'.
  5. European Association for Palliative Care, Prague, May 2013. Sharon Scott, Nicola White, Kathryn Lord, Martin Blanchard, Louise Jones, Elizabeth Sampson. 'The feasibility of recruiting people with advanced dementia into research: The Behaviour and Pain (BePaid) Study.'
  6. European Association for Palliative Care, Prague, May 2013. Kathryn Lord, Nicola White, Sharon Scott, Martin Blanchard, Louise Jones, Elizabeth Sampson. 'The BePAID study: the use of pain assessment tools in the acute setting.'

Oral presentations conferences and meetings:

  1. Haringey Dementia Forum, London, January 2012. Elizabeth Sampson-invited speaker. 'The BePAId project- preliminary results.' Audience comprised of lay people and professionals from within the borough who have an interest in dementia care
  2. Royal College of Physicians, London, June 2012. (Delirium and dementia in the acute hospital conference - Elizabeth Sampson-invited speaker). 'Dementia and delirium in the acute hospital: how, and how serious?'
  3. Liaison Psychiatry for Older People Conference, Leeds, October 2012. Elizabeth Sampson-invited speaker. 'Results from the BePaid project.'
  4. North Middlesex Hospital Health Services for Older People, London, November 2012. Elizabeth Sampson-invited speaker. 'Results from the BePaid project.'
  5. 5th International Conference on Pain and Impaired Cognition, Dresden, February 2013. Elizabeth Sampson-invited speaker. 'Pain in frail older people on acute medical wards.'
  6. Marie Curie Cancer Care Conference, London, March, 2013. Oral presentation-Kathryn Lord. 'The BePaid study: dementia patients who die in the acute hospital.'
  7. European Association for Palliative Care, Prague, May 2013. Oral presentation/poster discussion-Kathryn Lord. 'The use of pain assessment tools in the acute setting.'
  8. Alzheimer's Society Research Conference , London, June 2013. Elizabeth Sampson –invited speaker. 'The Impact of Acute Hospitalisation on Older People with Dementia: The Behaviour and Pain (BePAID) Study.'

Dissemination events

Staff training and dissemination event (NHS London)

This event was hosted by NHS London on the 5th of December 2013 through its on-going programme of dementia care training in all NHS acute trusts in the greater London area. This uses a 'train the trainers' model where each NHS acute trust has four clinicians per trust (in addition to their dementia leads) who receive detailed training and materials in a range of dementia care topics. They are then tasked with going back to their place of work and training all staff (including porters, health care assistants, nurses, occupational l therapists, physiotherapists, doctors of all levels and senior trust management teams)  in particular aspects of good dementia care. 

The researchers developed a module on pain and management of BPSD using our project data which was delivered by Dr Liz Sampson (BePAID project Principal Investigator) and Vicki Leah (Nurse Consultant, Older People UCLH Hospitals Trust) to 140 participants from ten north London acute hospital trusts.

Overall the programme has trained over 2000 acute hospital staff and the training module on Pain and BPSD , developed from the BePAID data has been one of the most frequently delivered.

Using the NHS London dementia network ensured a good attendance at because it assists trust in meeting their 'CQUIN' (Commissioning for Quality and Innovation) targets on dementia recognition and management.

Our Alzheimer's Society monitors Barbara diVita and Sylvia Wallach also attended the day and were able to see how research data can be used to inform training and meet some of the staff working in acute hospitals to improve care.

For further details on this programme see their website.

National Dementia Congress, London November 2013

We have used some of our dissemination funding to offer a repeat of the London dissemination and training at this national congress.

Report to NHS Trust dementia leads: This work is on-going. We will link with the Dementia Action Alliance Call to Action on Acute Hospital Care. A report will be forwarded to all UK NHS Trust dementia leads. This will be a joint piece of work with Simon Kitchen from the Alzheimer's Society.  This will enable the clinical and economic data from BePAID to be used to underpin and support the call to action, providing strong evidence around key areas of improvement. Trust dementia leads can use this information to lobby for better services at Trust Board/executive level. 

This project was jointly funded by Alzheimer's Society and the Bupa foundation.