01 24

Writing a paper on dementia

writing a paper on dementia

What our writers are good at

Our writers come from a variety of professional backgrounds. Some of them are journalists and bloggers, others have a degree in economy or law, some used to be literature or chemistry teachers. But above all we value those who are curious enough to keep on learning new things. That is why our writers are able to deal with practically any topic.

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.

This remit, an outline of the white paper, and subsequent drafts are prepared by a small writing committee with Dr Jenny van der Steen and prof. Cees Hertogh as lead authors, and prof. Lukas Radbruch and Marike de Boer as co-authors. To draft a first version of the set of recommendations as a core piece of the paper (phase 1), we have consulted with a few experts who have published extensively in this field and also have clinical experience in providing palliative care for dementia patients. The content is based on research findings, guidelines and consensus statements such as the guidelines issued by Alzheimer Europe, along with clinical experience of the experts.

We include experts in cancer and other palliative care, and in dementia care, as part of the target groups. We aim at consensus on the contents and relevance to the target groups. We ask for general feedback as well as for the level of agreement /disagreement with the recommendations, according to previous work in the white series paper (Educational remit) and formats in use for evaluation of decision aids.

The set of recommendations is revised with the feedback from these experts if needed and we will analyse and report on the process of achieving consensus, or areas where consensus is not achieved.


Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>