Case study:

23 July 2010

End of life care for people with dementia

Key points

A study into the care of people with advanced dementia in one London borough suggests that small changes to local health and social care services could significantly improve their end of life care as well as providing greater value for money.

End of Life Care for People with Dementia, produced by the Marie Curie Palliative Care Research Unit with a number of partners, including ForDementia and the National Council for Palliative Care, says that dementia patients are often hospitalised in times of medical or social crisis. But, the report suggests, most of these people would be better cared for if they remained in the community.

It recommends, among other things, a holistic dementia care pathway in the borough, better coordination among the different community agencies and more training for those acute hospital staff expected to care for people with dementia.

The objectives of the project, which began in 2008 were to: identify key issues of importance and concern to patients, carers and services; identify any barriers to good quality end of life care; scope existing dementia services in the borough, and make cost-effective recommendations to improve care pathways and outcomes at the end of life.

The study was based on focus group meetings with a range of professionals, in-depth conversations with seven carers who had recently been bereaved and a detailed examination of the case notes and care pathways experienced by nine patients with dementia who died in a home or institutional environment between May 2008 and March 2009.

Most of the people studied spent an average of 12 days on each admission in an acute hospital setting, ranging from two to 40 days. All the admissions reviewed were unplanned and in most cases involved ambulatory care sensitive conditions – that is, conditions that with adequate support could have been treated within the community, ranging from falls, urinary tract infections and dehydration, the need to give the carer respite or where a care package was breaking down.

The study calculated that the average cost of purchased care for someone with dementia in their last six months of life was around £25,000 with acute hospital episodes responsible for almost 20% of those costs. The costs of looking after someone at home (just under £20,000) were significantly less than for residential or nursing care (£37,000).

The authors recommend greater use and discussion about advance care planning from early on in the disease trajectory. There should be more help for carers, including greater respite support. They also support the introduction of a register for people with dementia similar to the GPs’ palliative care register.

Partners involved with the project have already committed to using the findings to improve local services. In addition the borough is setting up several care pathways to address some of the issues identified.

A report of the study’s findings and recommendations, including a full technical and economic analysis report, is now available on the Marie Curie Cancer Care website. In addition the team has produced a toolkit on the internet to enable other UK service providers to carry out similar work in their localities.