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

Abstract

Background and Objectives 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. Research Design and Methods 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. Findings 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. Discussion and Implications 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.

Good practice in needs-based post-diagnostic support for people with young onset dementia: findings from the Angela Project

“…Our study shows that younger people experience enhanced sense of agency not only when they are actively involved in disease management (Bannon et al, 2022) but also through public advocacy initiatives and cross-sector collaborations aiming to bring changes in real-life practice and public awareness of YOD.…”

“…Previous research has shown that maintaining autonomy is highly important for younger people (Greenwood and Smith, 2016). Bannon et al (2022) conducted a meta-synthesis of preferences for supportive services among younger people and their care-givers, and reported younger people's preference for services that enable managing symptoms while maintaining autonomy. Contrary to findings related to LOD (Holroyd et al, 2002), our study implies that younger people prefer to have honest facts about the condition and its prognosis to understand how to cope with symptoms and maintain control over their experience with YOD.…”

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

“…Furthermore, participants highlighted that it was pleasing to receive information tailored for different YOD-subtypes. Previous research has confirmed that caregivers have a need for YOD-subtype specific information ( Bannon et al, 2021 ; Bruinsma et al, 2021b ; Rosness et al, 2008 ). As known, support mainly focuses on Alzheimer's dementia or older peers ( Cations et al, 2017 ; Mayrhofer et al, 2018 ).…”

“…These results are consistent with the previous study on other versions of the RHAPSODY program ( Metcalfe et al, 2019 ). For YOD caregivers, flexibility is an important aspect of using support programs ( Bannon et al, 2021 ; Cations et al, 2017 ). This also applied to the RHAPSODY program which allowed participants to visit it from a place and time of their convenience.…”

“…Caregivers experience significant difficulty in coping with these circumstances and express an explicit need for age-appropriate professional support ( Arai et al, 2007 ; Bannon et al, 2021 ; Lockeridge and Simpson, 2013 ; Millenaar et al, 2014 ; Millenaar et al, 2016 ). Currently, YOD caregivers often experience most information is too generic and focused on caregivers of persons with dementia in old age ( Bannon et al, 2021 ; Cations et al, 2017 ; Mayrhofer et al, 2018 ; Millenaar et al, 2016 ). Especially following the diagnosis, caregivers have a need for specific information about what YOD entails, the prognosis, advice on informing others, questions regarding heredity, and available support and care.…”