11 01

Writing a paper on dementia

writing a paper on dementia

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Clinicians and researchers within the palliative care community have traditionally focussed on care for cancer patients. However, there are important differences in terms of disease trajectory, communicating with patient and family, and care provision that distinguish end of life with dementia from life-limiting disease with a better defined disease trajectory. For example, prognostication is more difficult than in cancer patients. Patients may survive to the last phase of dementia, but more patients die earlier from, e.g., pneumonia, intake problems, or comorbid disease.

Because of progressive cognitive problems, early advance care planning at a stage where this is still possible provides the opportunity to involve the patient, but this requires a context of acceptance and willingness to plan ahead. Because its application is not routine, several countries have initiated programs to promote advance care planning in populations that include dementia patients, such as for nursing home residents. Further, physical and behavioural problems in dementia are distinct, and elderly dementia patients frequently suffer from comorbidities which have to be considered in treatment decisions. Nursing and spiritual end-of-life care in dementia patients is largely undeveloped. Ethics and dignity are major issues in palliative care with dementia, and these concepts are relevant to the different palliative care domains. Patients with dementia often die in institutional settings. Most research in palliative care for dementia patients has been performed in nursing homes also because of the practicality of the infrastructure, and palliative care in long-term care is focus of diverse research and policy initiatives. However, palliative care for dementia patients at home and in hospitals deserves attention, especially when palliative care is initiated early.

So far, two-thirds of publications on end of life in dementia originates from the US. Treatment approaches vary widely cross-nationally, and in view of highly variable European settings, research including comparative studies in a diversity of European countries is desirable. This will help assess best practice elements of palliative care in dementia. Based on the distinct features of end of life with dementia touched upon above, future directions for policy, practice, and research into palliative care in dementia in Europe will be highlighted in the white paper.

The white paper argues that the palliative care approach is relevant and beneficial also for dementia patients.

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