A study by Dr Claudia Cooper (UCL Psychiatry) found that dementia patients in England’s poorest areas are 27 per cent less likely to be prescribed anti-dementia drugs than those in richer places. Read more in the Sun.

Over 800,000 people in the UK have dementia and numbers are growing as people live longer. There is no cure but drug treatments can help, for example by slowing memory loss among some people. The 2009 National Dementia Strategy made fair access to these treatments a priority.

We investigated how likely it is that people living with dementia get these drugs. We looked at primary care records from 6% of the UK population, including 75,000 people with dementia, from 2002 to 2013. In England people from least deprived areas (generally the richest) were 25% more likely to be started on ‘anti-dementia’ drugs than people in the most deprived areas. This did not change over time despite the National Dementia Strategy and other government policies. By contrast, in Scotland, how deprived the area where people lived did not affect whether they got this treatment.

It is striking that people with dementia living in more deprived areas get less treatment in England but not Scotland. Scotland spends more on health than England and the countries have different health policies. One reason for this difference in dementia prescribing may be that from 2006 to 2009 NICE restricted prescribing of these drugs to people with moderate dementia but the Scottish Intercollegiate Guidelines Network did not. We think that people from more affluent areas may be more likely to ask for and get treatments not endorsed by guidelines. In addition, younger people with dementia were more likely to be treated than older people, and men were more likely to be treated than women.

More research is needed to help ensure that dementia treatment in England is fair and meets equalities targets. We should be aware that policies to restrict treatment availability probably affect people in deprived areas most and make sure that changes benefit everyone.

This work was supported by The Dunhill Medical Trust [grant number R296/0513].

Progress to Date

Dementia directly affects about 820,000 people in the UK with numbers increasing rapidly as the population ages. Our study team has  learnt from previous research that agitation is extremely common in people with dementia and causes distress to themselves, family carers and paid carers; incurring significant costs and leading to the break down of relationships.

The MARQUE Project is an ongoing five year long study currently taking place all over England, led by our research team at UCL.

MARQUE was funded in response to the government’s “Challenge on Dementia” in 2012(1). Professor Gill Livingston was awarded over £3 million of funding by the ESRC and NIHR to conduct this study to increase knowledge about dementia, agitation and personhood with the ultimate aim of improving quality of life of people with dementia(2). Agitation has previously always been tackled at an individual level, but in this project, we aim to tackle agitation at an organizational level.

There are 6 streams of MARQUE. Please see www.ucl.ac.uk/psychiatry/marque for full details of these streams. Below is an update of where we are at.

Stream 1 – Theoretical understanding of personhood and agitation

The conceptual stream of MARQUE is active. Professor Paul Higgs is conducting a theoretical investigation into the concepts of person and personhood and their application to care practises for people with dementia.

Stream 2 – Longitudinal study of agitation, quality of life and coping strategies in care homes.

This stream has been active since April 2014 when recruitment began.

We have made fantastic recruitment progress to date:

We have recruited 97 care home clusters nationally – the map to the right shows the spread of our recruitment nationally.

We currently have 4193 people consented to the study:

• 1649 staff
• 1456 residents
• 1088 relatives

Stream 3 – Development and testing of intervention in care homes

We are in the process of finalising a manual based training programme for care staff to test in a randomised control study with 20 care homes.

The manual has been developed based on the our previous systematic review of non pharmacological interventions in dementia (Livingston et al 2014), the START manual(3) for family carers and has been informed by multiple interviews with care homes staff about the barriers and facilitators of managing agitation in care homes.

We plan to begin piloting the intervention in one care home in January 2016.

Research Assistants are currently being trained to deliver the intervention to start mid 2016.

Stream 4 – Qualitative exploration of agitation and family carers coping at home.

Recruitment is active and 5 family carers have been interviewed so far.

Stream 5 – End of life and agitation: Ethnographic study of people with dementia, families and paid carers.

Recruitment is active and 4 full observations of agitation at the end of life in hospital have been completed so far.

Stream 6 – Pilot intervention at end of life

Stream 6 is planned to start following the completion of stream 5.

Ongoing PhD projects attached to MARQUE:

Quality of life: a comparison of the perspectives of paid staff, family relatives and individual’s with dementia in care homes.

Sarah Robertson:

This PhD is embedded into Stream 2 and compares and explores the perspectives of paid staff, family relatives and people with dementia in a care home setting. I am exploring these perspectives qualitatively and quantitatively to build a conceptual model of quality of life in this context. Supervisors: Prof Gill Livingston, Dr Claudia Cooper, Dr Juanita Hoe.

A longitudinal study exploring the prescription and administration of analgesic and psychotropic medication in UK care home residents with dementia

Francesca La Frenais

A prospective study embedded into Stream 2 exploring medication use in residents with dementia in UK care homes. The primary objective investigates whether taking a higher dose of analgesic medication means that a resident will receive more or less psychotropic medication. Supervisors: Dr Liz Sampson, Prof Paddy Stone, MCPCRD, and Prof Carmel Hughes, Queen’s University Belfast).

Development of an evidence based intervention to improve agitation for people with dementia in care homes

  Dr Penny Rapaport

 This PhD is embedded within Stream 3. The PhD will explore and describe: staff understanding of agitation; the barriers and facilitators to psychosocial intervention through staff training; the contributors to “care home culture” and what can facilitate a shift in these factors. This exploratory work will inform the development and piloting of the intervention. Supervisors: Prof Gill Livingston, Dr Claudia Cooper.

Written by Sarah Robertson, PhD Student & Research Assistant on the MARQUE Project.

Email: sarah.robertson@ucl.ac.uk 

Twitter: @1SarahMae

References

1. https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia
2. https://www.ucl.ac.uk/ion/articles/news/20150223
3. http://www.ucl.ac.uk/psychiatry/start/

 

The PRIDE project aims to find ways that people diagnosed with dementia can stay independent for longer. It is one of six ESRC-funded project in the UK (three more of them are within UCL) that together comprise the world’s largest study into dementia. The meeting yesterday had representatives from Universities of East Anglia, Manchester, Sheffield, Hull and Loughborough as well as two universities in Santa Catarina in Brazil. The programme is extremely ambitious and it was great to get the team together for the first time, with the first component starting shortly. We look forward to bringing you more details of this in the coming weeks.