Interventions for Persons with Young-Onset Dementia and Their Families: A Scoping Review

Article type: Review Article

Authors: Cui, Xiaoyan^a | Wang, Junqiao^a | Wu, Bei^b | Zhao, Qianhua^{c; d; e} | Tang, Xueting^a | Wang, Jing^{f; *}

Affiliations: [a] Fudan University School of Nursing, Shanghai, China | [b] Rory Meyers College of Nursing, New York University, NY, USA | [c] Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China | [d] National Center for Neurological Disorders, Huashan Hospital, Fudan University, Shanghai, China | [e] National Clinical Research Center for Aging and Medicine, Huashan Hospital, Fudan University, Shanghai, China | [f] University of New Hampshire, NH, USA

Correspondence: [*] Correspondence to: Jing Wang, PhD, College of Health and Human Services, University of New Hampshire, 105 Main Street, Durham, NH 03824, USA. E-mail: [email protected].

Abstract: Background: Dementia occurring before age 65 is known as young-onset dementia (YOD), with Alzheimer’s disease being the most common type. YOD poses unique challenges for persons and families, impacting their working-age years and family responsibilities. Person-centered interventions and services are essential to improve their quality of life and social engagement. Objective: This study aims to synthesize non-pharmacological interventions for persons with YOD and their families to inform future targeted interventions. Methods: We conducted a systematic literature search across four databases: PubMed, PsycINFO, Scopus, and CINAHL. The included articles were carefully screened, categorized, and synthesized by following Arksey and O’Malley’s five stages framework. Results: We included 20 studies reported in 24 papers, with 11 studies (14 papers) on persons with YOD and nine studies (10 papers) on families. Quantitative intervention results vary, but qualitative interviews show positive feedback. Stakeholders provided positive evaluations, stating these interventions provided a sense of normalcy, facilitated communication among families, enhanced the independence of persons with YOD, and improved the families’ caregiving self-efficacy, thereby reducing care burden and psychological distress. The heterogeneity among the studies posed integration challenges. Conclusions: Interventions for YOD can improve the quality of life for both persons with YOD and their families. More extensive intervention studies are urgently needed, especially in developing countries, with a focus on family-centered and life course perspectives. In future intervention research design, a more extensive incorporation of stakeholder involvement is essential for successful implementation. Moreover, the integration of new technologies shows promise as a potential avenue for intervention advancement.

Keywords: Alzheimer’s disease, early-onset dementia, non-pharmacological interventions, review, young-onset dementia

DOI: 10.3233/JAD-231006

Journal: Journal of Alzheimer's Disease, vol. 97, no. 4, pp. 1519-1531, 2024