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 ,Aud Johannessen ,Geir Selbæk ,Per Kristian Haugen ,Jón Snædal ,Peter Høgh ,Torgeir Bruun Wyller ,Hege Kersten

doi:10.4172/2167-0870.1000204

Abstract

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 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

Highlights

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
Each consisting of 75 dyads with Alzheimer’s Dementia (AD) and 75 dyads with Fronto Temporal Dementia (FTD) with symptom debut 70 years
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

Summary

Introduction

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 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. Dementia is a condition usually affecting older people, but dementia symptoms can occur before the age of 65 years, defined as young or early onset dementia (YOD/EOD).The prevalence of dementia varies with age [1]. A recent Swedish study identifying risk factors in early adolescence for later development of YOD in men, raises concern for the contribution to YOD due to exposure to drugs and alcohol abuse in the younger population [6]. The hallmark symptom in AD is memory impairment, while FTD is characterized by the “frontal syndrome” with

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