Care4Youngdem: Care for people with Young-Onset Dementia towards the end of life/ Zorg bij dementie op jonge leeftijd

Young-onset dementia refers to the onset of dementia before the age of 65. Studies on characteristics of institutionalized people with young-onset dementia are largely lacking. Our Dutch Behavior and Evolution in Young-Onset Dementia (BEYOND)-study is the only study that assessed institutionalized people with young-onset dementia, but did not aim at mapping end-of-life care. As in people with late-onset dementia, people with young-onset dementia will die with or from dementia, but there are only few studies that report survival, mortality and cause of death in people with young-onset dementia. There are hardly any reports about palliative care practices, end-of-life decision-making or symptom prevalence and symptom management in people with young-onset dementia. However, it is likely that dying because of young-onset dementia has a different impact on the person with dementia and his relatives than in people with late-onset dementia, probably resulting in different needs and a different processes of decision-making. The white paper of the European Association for Palliative Care (EAPC) on defining palliative care in dementia that was published in 2014 was based on a Delphi study and limited to people with late-onset dementia.
We propose a study in which we map the practice of end-of-life care in people with young-onset dementia from the views of elderly care physicians, nursing staff members, people with young-onset dementia and their family members and to provide young-onset dementia specific recommendations on palliative care. One of the objectives of this study is to identify the differences between end-of-life care in people with young-onset dementia compared to end-of-life care in people with late-onset dementia. To this end, the Care4Youngdem-study partly replicates The Dutch End-of-Life in Dementia (DEOLD)-study. The DEOLD study was a large national cohort-study on the course and care-related aspects of institutionalized people with late onset dementia. Elderly care physicians and family-members completed questionnaires covering a broad area of care-related aspects with special emphasis on palliative care.

The Care4Youngdem-study is a mixed-method study and consists of three parts, the first part concerns the prospective observational study which is further clarified in the sections mentioned above:

1. a. Questionnaire-based survey among nursing staff members and elderly care physicians who care for people with young-onset dementia on palliative care practices at baseline and within two weeks after death of institutionalized people with young-onset dementia.

b. Questionnaire based survey among family members on palliative care practices at baseline and within two months after death of institutionalized people with young onset dementia.

2. a. Focus group interviews with elderly care physicians and nursing staff members who care for institutionalized people with young-onset dementia.

b. Focus group interviews with community dwelling people with young-onset dementia and with family-members (partner, children, parents) about views regarding palliative care.

3. Delphi consensus procedure in order to formulate young-onset dementia specific recommendations for optimal palliative care to supplement the white paper based on the outcomes of part 1 and 2.

The aim of this study is to describe the last phase of life of people with young-onset dementia. The research questions for this prospective observational study are:

1. What is the practice of end of life care in people with young-onset dementia regarding advance care planning, symptom prevalence, pharmacological and non-pharmacological treatments, and spirituality?

2. What are the views of family members on end of life care regarding the process of shared decision making, social support, quality of life, quality of dying and satisfaction with care?

3. What are the views of elderly care physicians and nursing staff members of people with young-onset dementia on end of life care regarding the process of shared decision making, symptom management and quality of life?

4. What is the difference between the practice of end-of-life care and views in the terminal phase (last month of life) compared to the period prior to the terminal phase?

We will administer adapted versions of the Dutch End-of-life in Dementia(DEOLD)-questionnaires for the elderly care physicians, nursing staff members and the family-members of the people with young-onset dementia at inclusion.
The single follow-up questionnaire for the elderly care physicians and nursing staff members will be administered two weeks after the patients’ death and the family-members will be asked to complete a single follow-up questionnaire two months after death of their relative.

Not applicable