Dementia is a progressive and largely irreversible clinical syndrome that is characterised by a widespread impairment of mental function. As the condition progresses, people with dementia can present carers and social care staff with complex problems including aggressive behaviour, restlessness and wandering, eating problems, incontinence, delusions, hallucinations and mobility difficulties.
It is estimated there are about 700,000 cases of dementia in the UK and 1,000,000 people caring for people with dementia. Demographic changes mean this number is likely to increase.
The definition of palliative care emphasises its “total” nature, encompassing not only physical symptoms, but also the psychological, social and spiritual aspects of non-curable diseases. The aim is to achieve “the best quality of life for patients and their families” from an early point in the disease (World Health Organization,1990). There is growing interest in the subject of palliative care for people with dementia from both health and social care services.
Case-note studies in the UK in psychiatric and acute hospital wards have suggested there is inadequate palliative care for people with dementia (Sampson et al 2006). In a retrospective survey of carers (McCarthy et al 1997), the most commonly reported symptoms suffered by the person with dementia in the last year of life were confusion (83%), urinary incontinence (72%), pain (64%), low mood (61%), constipation (59%) and loss of appetite (57%).
Most people with dementia die in long-term care or in hospitals, with only 19% dying at home and very few using hospices. Palliative care in dementia can raise many ethical issues for health and social care practitioners including choice over treatments, interventions and living arrangements.
● Dementia care should incorporate a palliative care approach from the time of diagnosis until death. The aim should be to support the quality of life of people with dementia and to enable them to die with dignity and in the place of their choosing, while also supporting carers during their bereavement process.
● Health and social care professionals working with people with dementia and their carers should adopt a palliative care approach. They should consider physical, psychological, social and spiritual needs to maximise the quality of life of the person with dementia and their family.
● Palliative care professionals, other health and social care professionals, and commissioners should ensure that people with dementia who are dying have the same access to palliative care services as those without dementia.
● Primary care teams should ensure that the palliative care needs of people with dementia who are close to death are assessed and that the resulting information is communicated within the team and with other health and social care staff.
● Health and social care staff should encourage people with dementia to eat and drink by mouth for as long as possible. Specialist assessment and advice concerning swallowing and feeding in dementia should be available. Dietary advice may also be beneficial. Nutritional support, including artificial (tube) feeding, should be considered if dysphagia is thought to be a transient phenomenon, but artificial feeding should not generally be used in people with severe dementia for whom dysphagia or disinclination to eat is a manifestation of disease severity. Ethical and legal principles should be applied when making decisions about withholding or withdrawing nutritional support.
● Sampson E L, Gould V, Lee D, et al (2006) “Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study”, Age and Ageing, 35, 187-189
● McCarthy M, Addington-Hall J & Altmann D (1997), “The experience of dying with dementia: a retrospective study”, International Journal of Geriatric Psychiatry, 12, 404-409.