Since the prevalence of dementia is increasing as the population ages, estimates of the number of people with dementia are constantly being adjusted; the current estimate is that 7–8 million people in Europe have got dementia.1 In 2010, the number of people in the world affected by dementia is estimated to be 35.6 million.2 People die with and from dementia, which is well known to be under-reported on death certificates.3 Dementia may well be the third leading cause of death.4
In a recent study in Boston involving 323 nursing home residents with dementia, 54.8% died over an 18-month period.5 There is a known association between poor cognitive function and increased mortality.6 Similarly, increasing cognitive impairment and severity of dementia was associated with higher mortality in a cohort of older people admitted acutely to a hospital in the UK.7 The implication of such findings is that advanced dementia is a terminal condition; if this is the case, palliative care seems to be an appropriate response.8
With the increasing interest in palliative care in dementia,9–17 it is perhaps surprising that a systematic review found little evidence to support its efficacy in advanced dementia.18 However, this may reflect terminology and underlying conceptual issues.
The terminological difficulty is that there is a whole host of components involved in palliative care – such as withdrawing or withholding treatment, for instance – that may not show up in a search for ‘palliative care’ alone. This in turn reflects underlying conceptual difficulties, because ‘palliative care’ suggests everything from the palliative care approach, applicable to all chronic conditions from the time of diagnosis, to end-of-life care, where palliative care is understood to apply specifically to a person’s last few days.19 There are also practical difficulties: for example, it can be difficult to recognise when the person with dementia is actually entering the dying phase and prognostication remains tentative despite indicators such as general dependency, hip fractures and the need for artificial feeding proving useful.12 Nevertheless, the holism of palliative care does seem relevant to dementia, whether at the time of diagnosis, when advance care planning may be appropriate,20,21 or at the time of death, especially if this approach to care is located within the broader framework of supportive care.22,23