Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study.

Monica Cations,Apo Demirkol,Nicole Denham,Perminder Sachdev,Clement Loy,Henry Brodaty,Brian Draper,Fiona White,Ruth Horsfall,Peter Gonski,Julian Trollor,Robert G Cumming,Adrienne Withall,Jong-Ling Fuh

doi:10.1371/journal.pone.0180935

Abstract

Background/AimsDespite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.MethodsEighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.ResultsAlthough at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.ConclusionPeople with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

Highlights

Young onset dementia (YOD; onset of symptoms under the age of 65) is associated with significant distress and burden [1,2]
Few of the clinical or demographic factors included here were related to service use
Anderson [16] posits that the strongest predictor of formal service use in any context is perceived need, and this appears to apply well to older people with dementia and their supporters [17]

Summary

Introduction

Young onset dementia (YOD; onset of symptoms under the age of 65) is associated with significant distress and burden [1,2]. Use of formal community care services can delay institutionalisation [7], provide respite [8], facilitate access to peer support [9], and spread the caregiving load [10]. Despite these benefits, previous studies have identified a low level of formal care use in YOD groups [11,12,13,14]. Anderson [16] posits that the strongest predictor of formal service use in any context is perceived need, and this appears to apply well to older people with dementia and their supporters [17]. Establishing the experiences of people with YOD and their supporters, and their perceived barriers to service use, can inform design and in turn improve uptake of the services intended for them [20]

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Discussion

Conclusion