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Complexity and gaps: The high-hanging fruit of dementia and palliative care research

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Healthcare teams have been looking after people dying from the dementias for aeons. But research on dementia and palliative care has only emerged as a specific field in the last… Click to show full abstract

Healthcare teams have been looking after people dying from the dementias for aeons. But research on dementia and palliative care has only emerged as a specific field in the last 30 years. It was back in 1986 that JAMA published a paper on the development and evaluation of the first dementia-specific hospice programme aimed at comfort.1 Since then, many more researchers from all around the world have entered the field. We are grateful to all those who submitted papers for the current special issue. The submissions we received showed the breadth and innovative nature of the work that is being done. The selection we now publish demonstrate the richness of that work and confirm the international nature of the research endeavour. Reviewing the papers published in this issue (as well as those submitted), or published elsewhere recently, we would make two observations. First, that the work still to be done is becoming more complex; and, second, that some important areas are relatively under-represented. Both observations could be summed up by saying that the low-hanging fruit has been harvested! The high-hanging fruit that remains is marked by its complexity and is required to fill the gaps in research that persist. Nevertheless, we are able to publish both quantitative and qualitative studies that demonstrate sophisticated methodology and include at least one negative trial (Boogaard et al.2). For we need to know what works and what does not. A general point is that the importance of education and of multidisciplinary input is obvious. The need for more work in the area of dementia and palliative care is shown by a recent Cochrane review in which only two studies were eligible for inclusion.3 It is pleasing, therefore, to have had a good response to the call for this special issue. Part of the complexity is conceptual: there are misconceptions about dementia and palliative care. Changing conceptions is a complex business. We would highlight four misconceptions. First, dementia is still not regarded as a terminal condition and, therefore, palliative care is seen as irrelevant (see Chen et al.4 (this issue), McInerney et al.5 and Poole et al.6). These papers indicate that this is true for the general public, as well as family and professional carers. This goes some way to explaining why it is so difficult to implement advance care planning (ACP) in dementia. Of course, there may be other reasons why people avoid ACP, ranging from existential angst to plain uncertainty about what to plan for (which is evident in the study of Poole et al.6). And yet we see evidence (Verreault et al.7 and Brazil et al.8) that information about both end of life issues and ACP are helpful for the families of people with dementia. The second misconception is that dementia is regarded as being no different from other conditions from which people die. Sometimes this is true, but people with dementia and their caregivers also have specific palliative care needs before and during the dying phase. In the White Paper developed for the European Association for Palliative Care (EAPC), optimal care for people with dementia was defined in terms of 11 domains and 57 specific recommendations.9 Many of these would have similar salience in other conditions, but some are specific to dementia, such as prognostication or dealing with uncertainty around the course of the disease. Third, there is a problem of fit. Dementia seems not to fit in the palliative or hospice model of care. In some countries, this may be because people with advanced dementia cannot consent to this sort of care, but it may also be because palliative services are not set up to accommodate some of the behavioural issues associated with dementia. Furthermore, palliative care is not seen as falling within the remit of psychiatry or other medical specialities. Hence, we continue to seek a panacea: a perfect palliative service for people with dementia. Is there such a thing? Or is it (see Broady et al.10 and Schmidt et al.11) that the needs of people with dementia and their families are so individual and multifarious that one service is unlikely to provide everything that is required? Unless, of course, the service facilitates or coordinates as much as provides care. Elsewhere, at least in the United Kingdom, there is evidence that services with strong leadership, which are nurse-led and linked to other palliative care services, can provide appropriate support to people dying with or from dementia.12 And we also know there is evidence that some specific palliative programmes can be useful.3,13 Nursing homes may be able to provide hospice-type care and avoid hospital admissions for this population,14 but this may 755280 PMJ0010.1177/0269216318755280Palliative MedicineHughes et al. research-article2018

Keywords: research; palliative care; hanging fruit; dementia palliative; care

Journal Title: Palliative Medicine
Year Published: 2018

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