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Young Onset Dementia study – A Prospective Cohort Study of Quality of Life and Specific Needs in Persons with Young Onset Dementia and their Families

Lara Hvidsten, Knut Engedal, Geir Selbaek, Torgeir Bruun Wyller, Peter Høgh, Jon Snaedal, Aud Johannessen, Per Kristian Haugen and Hege Kersten

Background: Young-Onset Dementia (YOD) causes challenges and concerns that are likely to affect quality of life and generate specific needs for health care, which may be different from what is observed in late onset dementia. The knowledge about the impact of YOD, in particular Fronto Temporal Dementia (FTD), on the affected families is scarce, and previous studies have underscored the importance of differentiating between diagnostic subgroups of YOD in future research. Accordingly, the aims of this study are to identify and compare factors influencing quality of life between persons with young onset FTD and Alzheimer’s Dementia (AD) and their families as the condition progresses. An additional aim is to compare the use of health care services among younger and older persons with dementia, and to investigate the life-stage specific needs for health care services in persons with YOD. Methods/Design: This is a two-year observational Nordic multicentre cohort study of community-dwelling persons with YOD and their families. Two diagnostic subgroups, each consisting of 75 dyads with AD and 75 dyads with FTD with symptom debut <65 years, will be included, and compared with a control group consisting of 100 older persons with dementia and onset >70 years. Participants are recruited from nine Nordic memory clinics. Comprehensive assessments are made at baseline, 12 and 24 months, supplemented with telephone follow-ups at 6 and 18 months. Primary outcome measure is Quality of life measured by Quality of Life in Alzheimer’s Disease (QoL-AD) and EuroQol-5D (EQ-5D). Secondary outcome measures are needs for health care services measured by Camberwell Assessment of Needs in the Elderly (CANE) and Resource Utilization in Dementia Lite (RUD Lite). The inclusion period is from February 2014 to February 2015, with follow-up data collection until February 2017. Conclusion: The sample size, the outcome measures, and the explanatory factors chosen in this study will provide new knowledge of quality of life in families with young onset FTD and AD, and contribute to tailoring the health care services to the life stage-specific needs of families with YOD. ClinicalTrials.gov identifier: NCT02055092