End-of-life care in institutionalized people with Young Onset Dementia (YOD): the Care4Youngdem-study

Young-onset dementia (YOD) refers to the onset of dementia before the age of 65. As dementia progresses the risk of institutionalization of People with YOD (PwYOD) increases. Although literature about institutionalization rates in YOD is scarce, our NEEDs in Young-onset Dementia (NEEDYD)-study showed that 33% of the patients was institutionalized after two year follow-up. Studies on characteristics of institutionalized PwYOD are largely lacking. Our Dutch Behavior and Evolution in Young Onset Dementia (BEYOND)-study is the only study that assessed institutionalized people with YOD, but did not have the aim to map end-of-life care. As in people with Late Onset Dementia (LOD), PwYOD will die with or from dementia, but there are only few studies that report about survival, mortality and causes of death in PwYOD. Moreover, a Pubmed search revealed no papers at all about palliative care practices, end-of-life decision-making or symptom prevalence and symptom management in PwYOD. However, it is likely that dying because of YOD has a different impact on the person with dementia and his relatives than in people with LOD, probably resulting in different needs and a different process of decision-making. The white paper of the European Association for Palliative Care (EAPC) on defining palliative care in dementia that was published recently was based on a Delphi study and limited to people with LOD. We propose a study in which we map the practice of palliative care in PwYOD from the views of Elderly Care Physicians (ECPs) and PwYOD and their family members and to provide YOD specific recommendations on palliative care. This Care4Youngdem-study partly replicates The Dutch End-of-Life in Dementia (DEOLD)-study. The DEOLD study is a large national cohort-study of the course and care-related aspects of institutionalized people with LOD. ECPs and family-members completed questionnaires covering a broad area of care-aspects with special emphasis on palliative care. The Care4Youngdem-study is a mixed-method study and consists of three parts: 1. a. Questionnaire based survey among ECPs who care for people with YOD on palliative care practices at baseline and within two weeks after death of institutionalized people with YOD. b. Questionnaire based survey among family members on palliative care practices at baseline and within two months after death of institutionalized people with YOD. 2. a. Focusgroup interviews with ECPs treating institutionalized people with YOD. b. Focusgroup interviews with community dwelling people with YOD and with family-members (partner, children, parents) about views regarding palliative care. 3. Delphi consensus procedure in order to formulate YOD specific, recommendations for the white paper based on the outcomes of part 1 and 2. The DEOLD study employed comprehensive questionnaires. These assessed patient characteristics including type of dementia, comorbidity, Activities of Daily Living, and severity of dementia. Further, questions on symptoms, (non) pharmacological treatments, and the End-of-Life in Dementia (EOLD) subscales Symptom Management (EOLD-SM), Satisfaction With Care (EOLD-SWC) and Comfort Assessment in Dying (EOLD-CAD); the Pain Assessment in Advanced Dementia (PAINAD) and the Quality of Life in Late-stage Dementia (QUALID) were also part of the DEOLD-questionnaires. The greater part of the DEOLD-questionnaires including the assessment scales is appropriate for the use in the current study. However, If needed, we will adapt and extend the questionnaires and we will pilot-test the questionnaires among professionals and family-members. For the qualitative part 2, we will develop an interview guide. The aim of the focus group interviews in ECPs, PwYOD and their family members is to better understand issues specific to YOD, and challenges regarding advance care planning (ACP), advance directives, and the process of shared decision-making. We will also explore differences in palliative care practices and end-of-life decision-making between LOD and YOD. Finally, a Delphi study will be conducted among experts in palliative care and research in PwYOD in order to achieve consensus on YOD-specific recommendations in addition to those in the white paper. Bringing together the Principal Investigators of the NEEDYD, BEYOND, DEOLD and EAPC Delphi study in the project group warrants feasibility of the study, by combining expertise on YOD, end-of-life care and quantitative and qualitative research. This study will provide very relevant information on the highly understudied area of palliative care in PwYOD.