Establishing and sustaining high-quality services for people with young onset dementia: the perspective of senior service providers and commissioners.

Abstract

Objectives: We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters.

Design: This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis.

Setting: A purposive sample of providers was selected from diverse areas and contrasting YOD services.

Participants: Eighteen senior staff from YOD services and two dementia service commissioners took part.

Measurements: For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured.

Results: Recorded interviews lasted 30-40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance.

Conclusions: Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.