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

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.

Evaluating a young-onset dementia service from two sides of the coin: staff and service user perspectives

“…Research suggests that carers of people with YOD require more care support due to the higher levels of behavioural disturbances than in late-onset dementia [3]. However, growing evidence suggests that services are often maladapted to the needs and wishes of people living with the condition and their carers ( [8,9,16,20,21]; 2018). The barriers to post-diagnostic services span from insufficient information [16] to not receiving support and help at the right time [10].…”

Health Professional Perspectives on Rehabilitation for People With Dementia

“…Clinical guidelines for dementia care recommend that people with dementia should have access to care pathways that support them to maintain their independence and community participation for as long as possible (Guideline Adaptation Committee, 2016;National Collaborating Centre for Mental Health, 2007). However, people with dementia and their families report that they receive insufficient professional support after their diagnosis (Cations, Withall, et al, 2017;Low, Swaffer, McGrath, & Brodaty, 2017;Prorok, Horgan, & Seitz, 2013).…”

Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

“…People living with YOD constitute a “sandwich generation” caring for their children while also having responsibilities for aging parents. When the need for healthcare services arise, such services may not be available, be age-inappropriate (e.g., age-restricted) or not meet the individual needs of their families [18]. …”

“…People with YOD tend to be community-dwelling relatively long [27], relying on the informal help provided by the family. This may lead to an underuse of formal healthcare services [18], which may add additional strain on the whole family. As there is no cure for dementia, support and early intervention for symptomatic relief is imperative in maintaining and improving QOL for people with YOD and their families.…”