Living with Dementia Magazine, December 2008

End of life care for people with dementia is a complex area which needs greater understanding if we are to improve the care people receive towards the end of their lives, says Catherine Evans*

Living with dementia is a common experience as more of us live to an advanced age. Individuals living with dementia will die with the disease and towards the end of life many will require the support of a care home.

A multi-disciplinary group of researchers based in Hertfordshire and London is addressing the issue of end of life care by carrying out a study to find out how best to develop palliative care for older people with dementia in care homes.

The aim of the study (known as the EVIDEM End of Life study*) is to develop and test a specific approach for older people with dementia in care homes to ensure they receive the best possible care towards the end of life.

End of life care is closely related to palliative care, which focuses on the support of people as they live and die with a life limiting illness.

Complexities
End of life care for people with dementia is complex. The nature of death for someone living with dementia is difficult to predict. An older person may die with dementia but may equally die from another medical condition, for example cancer or heart disease, or as a result of another illness and dementia. A minor illness can also exacerbate underlying conditions, causing a decline in a person's condition or death.

Optimising end of life care for people with dementia requires a greater understanding of their care needs and experiences of gradual decline and eventual death. Understanding these areas could inform how best to support health and care home staff to provide palliative care.

Recognising the onset of death
One of the challenges faced by practitioners and families is recognising and acknowledging nearness to death for an older person with dementia. Older people often experience a gradual, long-term decline in their condition so clear indicators of when they may be approaching death are difficult to recognise and agree on. A lack of recognition of dementia as a life limiting disease and uncertainty over how changes in a person's symptoms can indicate closeness to death can contribute to under treatment of symptoms, such as pain, and the use of more aggressive interventions such as artificial feeding.

Problems with communication, common in the later stages of dementia, can also lead to difficulties in identifying the significance or severity of symptom change.

What is needed
End of life care and dementia care have become growing areas of prominence in policy (evident in the NHS End of Life Care programme, the recent End of Life Care Strategy and the forthcoming National Dementia Strategy). The End of Life strategy, however, assumes the timely recognition of an end stage for people with dementia and suitability of frameworks that draw on cancer models of care with limited understanding on appropriateness for people with dementia.

The National Dementia Strategy identifies the importance of improving the care people with dementia receive in care homes but fails to identify end of life care as an area for development.

Claire Goodman, Principal Investigator for the End of life study, says,

'End of life care for people with dementia requires a broad approach over many years which addresses the changing needs of the person with dementia, their families and the NHS and social care staff who provide care.

It also needs closer working between carers and NHS and care home staff, and policy commitment to recognise and support the needs of people living with dementia towards the end of life.'

End of life study
As part of the EVIDEM End of Life study, researchers will be visiting ten care homes over four years to review older people's care home records, assess standards of care and document support needs. They will also talk to older people about their experiences and wishes for the future and to staff about the challenges involved in providing care.

The findings will lead to the development of a dementia specific toolkit to support the provision of palliative care, which will be developed and tested in the second stage of the study.

Heather Maggs, a member of the study's Research Advisor Group, said,

'Everyone deserves to have the death they would choose for themselves, not just the mentally robust. If issues can be investigated and best practice developed for all end of life settings, it is more likely that more people with dementia can have the death they would want.'

Planning ahead

Advance decisions
The Mental Capacity Act 2005 gives people in England and Wales a statutory right to refuse treatment through an advance decision. An advance decision allows a person to state what forms of treatment they would or would not like should they become unable to decide for themselves in future. Prior to October 2005, advance decisions were called advance directives. (Any advance directives made before this date are still valid provided they conform to the Mental Capacity Act guidelines).

The increasing prominence of advance decisions indicates a wider recognition of dementia as a terminal disease. It also underlines the importance for individuals and their families to discuss and document treatment preferences towards the end of life. In practice, however, the use of advance decisions (and advance directives before them) has mainly focused on their content and not on their implementation in social or care home settings, for example.

Read this example of how a man with advanced dementia has planned with his family how he wants to be cared for at the end of his life. He had set up an advance directive. The case illustrates how complex this area of care is and the difficulties involved in implementing an advance directive/decision. Parties need to ensure there is a shared understanding of a dying state, optimal symptom management and wishes are clearly expressed in an advance directive/decision.

*Catherine Evans is a research fellow at the University of Hertfordshire. The End of Life study is one of five research projects that form part of a £2 million programme of research known as EVIDEM (Evidence-based interventions in dementia). The programme is funded by the National Institute of Health Research. For more information about the study or other EVIDEM projects, visit the website at www.evidem.org.uk

Lynden Emery's story

Read Lynden Emery's story

Factsheets

The Society's factsheet, Advance decision (463), has more information about advance decisions and includes a form for drafting one. Our Later stages of dementia factsheet (417), which has information on how to recognise symptoms in the later stages and tips for coping, may also help.

For a free copy of either, contact Xcalibre on 01753 535751 or email alzheimers@xcalibrefs.co.uk