Liz Sampson (pictured) is a clinical senior lecturer at University College London, in a post funded by Marie Curie Cancer Care, and a consultant psychiatrist at Barnet Enfield and Haringey Mental Health Trust. Alistair Burns is the National Clinical Director for dementia in England, professor of old age psychiatry at the University of Manchester and a consultant psychiatrist at the Manchester Mental Health and Social Care Trust. Mike Richards is National Clinical Director for Cancer and End of Life Care at the Department of Health and led the development of the End of Life Care Strategy.
Today approximately 750 000 people in the UK have dementia; by 2025 this will have increased to over 1 million. Perhaps an even more sobering fact is that one in three people over the age of 60 will die with dementia. Reference Brayne, Gao, Dewey and Matthews1 The paper in this month’s Journal by Lawrence et al aims to define good end-of-life care for people with dementia and identify how this can be delivered across a range of care settings. Reference Lawrence, Samsi, Murray, Harari and Banerjee2
Why do people with dementia experience poor end-of-life care?
Recent epidemiological studies have demonstrated significantly increased mortality rates in people with dementia. A study of a UK population screened for dementia gave a median survival time from diagnosis of 4.1 years. Reference Xie, Brayne and Matthews3 In a primary-care-based study, where the illness may be diagnosed at a much later stage, median survival times were 6.7 years in those diagnosed at age 60–69, falling to 1.9 years for those diagnosed at age 90 or over. Reference Rait, Walters, Bottomley, Petersen, Iliffe and Nazareth4
A US study of care-home residents with advanced dementia revealed an even shorter median survival of 1.3 years, a life expectancy similar to that of metastatic breast cancer. Reference Mitchell, Teno, Kiely, Shaffer, Jones and Prigerson5 Medical and nursing home staff consistently overestimate prognosis in advanced dementia; at nursing home admission only 1.1% of residents were thought to have a life expectancy of less than 6 months; however, 71% died within that period. Reference Mitchell, Kiely and Hamel6 In addition, there is a poor understanding of the pathophysiology of dementia among professionals. Reference Thuné-Boyle, Sampson, Jones, Kings, Lee and Blanchard7 Thus, people with dementia, particularly those in the advanced stages, may experience poor end-of-life care because they are often not perceived to have a terminal illness, despite the fact that they are often bed bound, doubly incontinent and unable to communicate. Health and social care services may not be optimally configured to meet their complex needs.
What are the end-of-life care needs of people with dementia and their families?
In terms of physical problems, people with advanced dementia suffer a range of symptoms, similar to those found in the terminal stages of cancer, for example pain and dyspnoea. Many of these symptoms remain poorly detected and often go untreated. Reference Shega, Hougham, Stocking, Cox-Hayley and Sachs8 Pressure sores, agitation and eating problems (i.e. difficulty swallowing or anorexia) are very common. A study comparing symptoms experienced by people dying with dementia compared with those with cancer showed that the symptom burden between the two groups was comparable; in particular 64% of patients with dementia experienced pain and 57% loss of appetite. The healthcare needs of both groups were also similar. Reference McCarthy, Addington-Hall and Altmann9 People with advanced dementia are often immobile, bed bound, at increased risk of aspiration and have impaired immunological function leaving them more at risk of pneumonia, urinary and other infections. These often lead to futile and distressing admissions to acute hospitals and are the commonest cause of death.
Numerous studies have highlighted how there is a failure to adopt a palliative or supportive approach to people with dementia and how inappropriate interventions are used. In contrast to those with cancer and other advanced chronic disease, most people with severe dementia lack the capacity required to make decisions about their care and treatment. This has a profound impact on providing the vital components of good end-of-life and person-centred care.
Support for carers, both during a person’s illness and after their death, is a key aspect of the national Dementia and End of Life Care Strategies for England (see Appendix). There has been little research on carers of people with advanced dementia and their experiences of caring at the end of life; these may differ in important features from caring for those with other terminal diseases. Carers and family members of people with dementia often suffer significant levels of distress, burden and in particular ‘anticipatory’ or ‘pre-death’ grief. The unpredictable nature of disease progression as well as personality changes, behavioural and psychological symptoms of dementia add to this. Carers are frequently expected to act as ‘proxies’ and may have to make difficult and emotionally demanding choices at the end of life, for example, regarding parenteral feeding and resuscitation.
How can we improve the provision of good-quality end-of-life care to people with dementia?
The World Health Organization defines palliative care as: ‘The active, total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families’. 10
It has been suggested that people with dementia are denied access to hospice care, which is widely regarded as a gold standard. However, it could be argued that hospices provide specialist palliative care and that they should focus on cases of specialist need. Most of the symptoms experienced by people with dementia at the end of life, such as pain, pressure sores or difficulties swallowing, do not require specialist palliative care intervention but good-quality basic care. It is vital, as Lawrence et al state, that care is more than just ‘task focused’ and that staff should go ‘beyond’ this. Reference Lawrence, Samsi, Murray, Harari and Banerjee2 Most care professionals are keen to attend to the person with dementia’s social, emotional and cultural needs but, as an inquiry by the UK Equality and Human Rights Commission has found, time constraints and high levels of staff turnover pose a challenge to providing even a basic standard of care. 11
Directly transferring interventions and models of care from the cancer field may not be appropriate. In contrast to the cancer workforce, most end-of-life care for people with dementia is provided by relatively inexperienced care assistants in residential settings and by social services carers. Training and educational programmes on end-of-life care for nursing home staff are effective in improving knowledge and increasing satisfaction with end-of-life care in bereaved family members. Reference Arcand, Monette, Monette, Sourial, Fournier and Gore12
Advance care planning is a cornerstone of the Government’s end-of-life care strategy in England and is often promoted as a possible way of improving choice and autonomy for people with dementia. However, it may be necessary to do this in the earlier stages of dementia when a person is still able to make decisions and express their values and preferences. There is a paucity of information on whether advance care plans, made around the time of a diagnosis of dementia, actually change outcomes or improve the ‘quality of death’. Lawrence et al highlight some key concerns regarding this including the reluctance of staff to assume the responsibility for discussing advance care planning and concerns that a person with early dementia may adapt and undergo a ‘response shift’ in their view of what constitutes a good quality of life as the disease progresses. Reference Lawrence, Samsi, Murray, Harari and Banerjee2
In terms of specific interventions for people with dementia, the evidence base is somewhat limited, particularly when compared with research on palliative care for people dying from cancer. Systematic reviews have identified how care mainly focuses on specific interventions such as ‘fever management policies’, pain control or the withdrawal of care (i.e. not prescribing antibiotics), rather than a more active palliative mode. Reference Sampson, Ritchie, Lai, Raven and Blanchard13 Good person-centred care requires a more rounded approach and a number of multicomponent complex interventions and pathways have been developed that may improve the quality of end-of-life care in the acute hospital and in the community. These include the National Institute for Health and Clinical Excellence (NICE) guidelines for dementia 14 that include some recommendations, in particular the use of the Gold Standards Framework (see Appendix) and the Liverpool Care Pathway for the dying.
Some people felt that the National Dementia Strategy contained inadequate reference to end-of-life care and that the End of Life Care Strategy should have made more acknowledgement of the rising numbers of people who will die with dementia (see Appendix). The focus of many psychiatric services on a ‘recovery model’ and the important emphasis on early detection and management of dementia may conflict with taking a more palliative approach. Policy guidance and end-of-life initiatives have multiplied over the past 5 years but these have not been underpinned by good-quality evidence on end-of-life care for people with dementia and their families. Research has tended to focus on people with advanced dementia and comparatively little is known about those in the earlier stages of dementia who may be dying from other chronic comorbid conditions, such as end-stage renal or respiratory failure, or cancer. It was therefore encouraging that the recent Ministerial Advisory Group on Dementia Research highlighted the need for more research on end-of-life care. 15
New interventions or service models to improve care will have to be developed carefully, taking account of the wide range of settings in which people with dementia die, as well as cultural and staff factors, with due consideration of what may work best for whom and in what circumstances. In view of the increasing numbers who will require care as they die with dementia, interventions that are developed must also be cost-effective. The paper by Lawrence et al defines a good death with dementia as being free from pain and being surrounded by those who are close to the person with dementia; Reference Lawrence, Samsi, Murray, Harari and Banerjee2 these are not highly technical or difficult goals but require cooperation, communication and good coordination by and between health and social care professionals.
Key guidelines and documents
National Dementia Strategy:
National End of Life Care Strategy:
End of Life Care for People with Dementia: Commissioning Guide
(6 July 2010). National End of Life Care Programme/National Institute for Health and Clinical Excellence:
Care towards the End of Life for People with Dementia:
An Online Resource Guide:
Gold Standards Framework: