Care for People with Young Onset Dementia towards the End of Life

The importance of palliative care in dementia is increasingly being recognized
and the number of studies in this area is growing gradually. According to the
World Health Organization, palliative care is defined as an approach that
improves the quality of life of patients and their families facing the problems
associated with life-threatening illness, through the prevention and relief of
suffering by means of early identification and impeccable assessment and
treatment of pain and other problems, physical, psychosocial and spiritual. At
the request of the European Association for Palliative Care (EAPC), a white
paper was published containing 57 recommendations for optimal palliative care
in dementia. However, these recommendations are only based on literature and
consensus in late-onset dementia.
Almost no research is available regarding palliative care in people with a
symptom-onset of dementia before the age of 65, also known as young-onset
dementia. People with young-onset dementia are in a different phase of life and
they have different needs. Therefore, we expect that the wishes regarding
palliative care will be different for this specific group compared to people
with late-onset dementia. We have asked healthcare professionals who have
experience with young-onset dementia to assess which of the 57 recommendations
of the white paper are of special interest to this group. According to them,
these were in particular the recommendations regarding shared decision-making
and the discussion of the progressive course of dementia.
The objective of Care4Youngdem study is to map current practice and wishes
regarding palliative care in people with young-onset dementia and provide
young-onset dementia specific recommendations for optimal palliative care. The
research project started in October 2016 on specialized care units for people
with young-onset dementia. Questionnaires about palliative care are completed
by family caregivers, doctors and carers. The research question regarding
advance care planning will be further explored with qualitative interviews with
persons with dementia, family caregivers and healthcare professionals. Persons
with dementia and their family caregivers will be interviewed individually,
whereas the healthcare professionals will be interviewed in a group setting,
during focus group discussions.
Recently, a similar qualitative research project has been carried out with
family caregivers of people with young-onset dementia. A couple of other
studies have also been conducted in which persons with late-onset dementia have
been interviewed about topics related to palliative care. These studies
indicated that providing comfort is important and advance care planning can
ensure that patients worry less about the future.

Understand perceptions of people with young-onset dementia and their family
caregivers about quality of life, advance care planning and care including
end-of-life care, and understand what professional caregivers can learn from
understanding and discussing these perceptions.

Qualitative research: individual interviews with persons with dementia and
their family caregivers, followed by group interviews with professional
caregivers.

There is a risk on emotional stress. However, the risk is limited to a minimum
by providing clear explanations about the content of the interview beforehand.
In addition, the interview can be stopped immediately at the respondent's
request or in case of distress, and there are options for follow-up care if
needed.