.- uncertainty in prognosis.Many of the systems for end of life care are designed around people with cancer, rather than peoplewith dementia. People with dementia may not be referred for specialist end of life care (such as at ahospice), and specialists in end of life care are more used to dealing with conditions with a steepperiod of decline, such as cancer, rather than the more uncertain prognosis of dementia.
A 'good death'
The End of life care strategy (Department of Health, 2008) suggests 'although every individual mayhave a different idea about what would, for them, constitute a "good death", for many this wouldinvolve:.- being treated as an individual, with dignity and respect.- being without pain and other symptoms.- being in familiar surroundings.- being in the company of close family and/or friends'.Alzheimer's Society believes this is just as true for people with dementia as it is for people who haveother health conditions.
Public awareness and planning
Diminishing capacity becomes a particular problem in end of life care for people with dementia. Incases where a person still has capacity, they would be involved in the decision to shift from treatingthe condition to palliative care, along with decisions such as where they would like to die and whattreatments they wish to receive. However, where capacity to make these decisions is lost, as is oftenthe case for people with dementia, this is no longer possible and decisions will have to be made ontheir behalf.The lack of public understanding of dementia, and the 'taboo' about discussing death and dyingcombine to create a double stigma around dementia and death. This means that it is rarely thoughtabout and conversations that could achieve positive outcomes for personal choice at the end of life donot take place. Planning care, even if it is an unstructured conversation about the person's wishes,makes decision making easier at the end of life. Under theMental Capacity Act, in England andWales there are formal tools in place for someone to state wishes about who they would like to makedecisions on their behalf, or the treatments they would not like to have. However, uptake of thesetools is low (Alzheimer's Society 2012). In Northern Ireland, such tools do not have a formal basis inlaw as there is not currently any capacity legislation.The clinical value ofadvance planning for end of life careis also clear. A recent study (Baker et al,2012) found that advance care plans drawn up in primary care could help reduce unplanned hospitaladmissions by 52% as more was understood about the person's wishes, which means that where theyexpressed a wish not to be hospitalised it was possible for this to be followed. However, professionalsmay be unwilling to discuss end of life planning with people with dementia (Alzheimer's Society 2012).There is a broad lack of engagement with dementia as a terminal condition. While it is possible to live,and in some cases live well, for many years with dementia, it is a progressive disease and one of the