A qualitative meta-synthesis of common and unique preferences for supportive services among persons with young onset dementia and their caregivers.

Abstract

Young onset dementias (young onset dementia) produce a myriad of stressors for persons with young onset dementia and their caregivers, yet there is a critical shortage of supportive services that address their needs. To develop such services, it is necessary to first comprehensively understand persons' with young onset dementia and their caregivers' service preferences. Therefore, we conducted a meta-synthesis to integrate and summarize qualitative data on persons' with young onset dementia and caregivers' preferences for supportive services for young onset dementia, defined as support provided by medical providers, psychosocial interventions, and any other resources/services provided to promote positive adjustment in persons with young onset dementia and their caregivers. We searched five electronic databases for qualitative articles from inception to January 2020. We extracted and synthesized data from eligible articles using thematic analysis. After removal of duplicates, we screened 219 articles identified through database and hand searches. Forty-three studies met our inclusion criteria. We extracted findings from these 43 studies on preferences within three a priori defined domains: 1) general characteristics of supportive services, 2) format and modality of supportive services, and 3) content for supportive services. Persons with young onset dementia and caregivers predominantly expressed common preferences, with some unique preferences based on their specific roles within the partnership. Persons with young onset dementia and their caregivers endorsed largely overlapping preferences, including having direct contact with providers and the ability to participate together in programs that have content and skills relevant to their specific needs and challenges. Findings can directly inform the format, content, and procedures of supportive services for persons with young onset dementia and their caregivers.