Specialist palliative care in dementia

In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.¹ In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.^{1 w1} Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.²

The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic approach, involves the patient and the family in decisions, and fosters good supportive communication between all concerned.^w2 Hence, it equates to person centred care in dementia.^{w3 w4} Evidence suggests a palliative care approach in dementia is favoured by formal and informal carers.³ The wishes of patients themselves, however, are hardly known—although preliminary results show high rates of satisfaction when a palliative care approach is adopted.⁴

Palliative care in dementia would facilitate discussion about the diagnosis and thus allow subsequent care to be based on previously agreed goals, which could be modified periodically.^{w5 w6} Good communication would also involve families, where bereavement around dementia is different to bereavement following cancer.⁵

The palliative care approach should be integral to the management of all non-curative diseases, so this is hardly a controversial idea in connection with dementia. However, it is still worth voicing, given the evidence that the quality of care for people with advanced dementia is so poor.^w7 The select committee commended the use of care pathways for palliative care.^w8 A more controversial suggestion is that people with dementia require specialist palliative care. What might this entail?

Specialist hospices for people with advanced dementia, focusing on terminal care, have existed in the United States for some time. When compared with usual nursing care, patients with dementia experienced less discomfort in a palliative care unit, which was also cheaper.⁶ Specialist hospice dementia units tend to limit medical interventions, including both tube feeding and cardiopulmonary resuscitation,^{w9 w10} that inflict discomfort and do not provide unequivocal benefit.

Such units make the control of symptoms a priority. Research into whether or not antibiotics relieve distress in advanced dementia continues.^{7 w11} Some evidence exists that conservative management does not seem to hasten death.⁸ Despite instruments to detect it, pain is undertreated in people with Alzheimer's disease.^{9 w12} Adequate analgesia may help to combat behavioural disturbances in dementia.¹⁰ Research into these issues would be encouraged by specialist dementia palliative care units. But is this model all that is required?

The model would certainly serve a function, particularly in those people who die with dementia but from some other cause. Yet there are problems. Firstly, 41% of people with dementia die in nursing or residential care.² To move them in the terminal phase to a hospice might be deleterious. Secondly, identifying the terminal phase in dementia can be problematic.^w13 Thirdly, most hospice staff feel undertrained to care for people with dementia.³ Finally, we do not know whether this model would be the one chosen by people with dementia and their carers.

Is there a need, therefore, for some alternative form of specialised palliative care in dementia? Firstly, a need exists for the palliative care approach to be pursued in all community and hospital settings. Dedicated teams would help to improve the skills in delivering palliative care more broadly to patients in the community.¹¹ Such teams could also support existing hospice personnel in managing people with dementia.

Secondly, the specialist expertise of such teams might focus on the management of behavioural and psychological signs in dementia (BPSD), which are ubiquitous.^w14 Palliative care fosters a holistic view, with attention to the psychological, social, and spiritual needs of people with dementia. Psychosocial interventions, which may incorporate alternative therapies,^w15 are now recommended as the first line of treatment for BPSD.^w16 By encouraging an empathic approach, a facilitating social environment and meaningful activities, with the judicious use of medication, specialist teams might nurture a better quality of life for people with dementia.^{w17 w18}

The evidence shows that specialist palliative care would be beneficial in dementia.¹² The select committee was also concerned about the use of NHS facilities for long term care.¹ Conceivably, a more positive philosophy for continuing care units for people with dementia might come from looking on them as specialist palliative care units. Through outreach and liaison they could foster broad palliative care for people with dementia in the community, including in nursing and residential homes, as well as supporting hospitals and hospices. They could continue to provide inpatient care for people with complex needs, while encouraging research and enabling a more flexible, holistic, and person centred approach to the difficulties that arise for people with advanced dementia.