School of Nursing, University of British Columbia, Vancouver, Canada.
Department of Community Health Sciences, Rady Faculty of Health Sciences, 423134University of Manitoba, Winnipeg, Canada.
Dementia (London). 2023 Jan;22(1):180-196. doi: 10.1177/14713012221138145. Epub 2022 Nov 14.
People living with young onset dementia and their families have significant support needs, but experience difficulties accessing services. This study explored the process of accessing community-based services drawing on semi-structured interviews with people living with dementia, family members and providers in Winnipeg, Canada. Data analysis involved a combination of inductive coding and theoretical analysis using the candidacy framework as a conceptual lens. Forced to navigate services that do not recognize people with young onset dementia as a user group, participants experienced ongoing barriers that generated continuous work and stress for families. Access was constrained by information resources geared towards older adults and restrictive eligibility criteria that constructed people with young onset dementia as "not impaired enough" or "too impaired". At the organizational level, fragmentation and underrepresentation of young onset dementia diminished access. Our findings underscore the need for continuous, coordinated supports alongside broader representation of young onset dementia within research, policy, and practice. We conclude with a discussion of how the candidacy theory could be extended to account for the social and political status of user groups.
患有早发性痴呆症的人和他们的家人有很大的支持需求，但在获得服务方面存在困难。本研究通过对加拿大温尼伯的痴呆症患者、家庭成员和服务提供者进行半结构化访谈，探讨了获得社区服务的过程。数据分析采用了归纳编码和理论分析相结合的方法，以候选框架为概念视角。由于被迫使用不将早发性痴呆症患者视为用户群体的服务，参与者经历了持续的障碍，这给家庭带来了持续的工作和压力。由于针对老年人的信息资源和限制资格标准，将早发性痴呆症患者定义为“不够受损”或“过于受损”，因此获得服务受到限制。在组织层面，早发性痴呆症的碎片化和代表性不足也减少了获得服务的机会。我们的研究结果强调了需要提供持续、协调的支持，同时在研究、政策和实践中更广泛地代表早发性痴呆症。我们最后讨论了候选理论如何扩展到考虑用户群体的社会和政治地位。
