The intention of this paper is to stimulate debate concerning how we should think about dementia as a condition at the end of life and how, therefore, we should plan and provide care for people with dementia and for their families. It considers questions of whether there is a need for dementia specific palliative care services and when discussions about end of life care should begin. It is about our models of care and how we put them into practice.
- At the personal level, professionals must embrace therapeutic optimism and rule out nothing if it might help persons with dementia to live life to the fullest. (Small et al., 2007)
- Professionals and families must also learn to accept that when investigations or treatments are ineffective or burdensome they are not morally obligatory, even if it remains a moral imperative to provide comfort and dignity. (Hughes 2010)
- When the person is in the most advanced stages of dementia it is not generally in their best interests for them to be admitted to a hospital if their physical state deteriorates. The view is that the person should not be subjected to invasive investigations and treatments (including resuscitation) when these are likely to be ineffective and burdensome. (Hughes 2010)
- There is good evidence that people with dementia do not do well in acute hospitals (their mortality is higher than for those without dementia), which raises the question as to why they are transferred from an environment in which they are known well to one which is disorienting and frightening. (Sampson et al. 2009b)