Young-onset dementia: A systematic review of the psychological and social impact on relatives.

Patient Educ Couns

Graduate School of Health, University of Technology Sydney, Ultimo, NSW, Australia; Genomic Medicine Department, The Royal Melbourne Hospital, Parkville, VIC, Australia; Department of Medicine Royal Melbourne Hospital, The University of Melbourne, Parkville, VIC, Australia.

Published: February 2023

AI Article Synopsis

  • Young-onset dementia (YOD) not only affects those diagnosed but also poses significant psychological and social challenges for their families, especially for biological relatives who face a higher genetic risk.
  • A systematic review of empirical studies revealed that most research focuses on the experiences of children with a parent suffering from YOD, identifying themes such as disruption of family dynamics, profound emotional turmoil, uncertainty about the future, lack of support, and various coping strategies.
  • The study emphasizes that while the effects on relatives are substantial, their needs often go unrecognized, and suggests a framework for addressing these challenges in genetic counseling practices.

Article Abstract

Objective: Young-onset dementia (YOD) has significant impact for the affected person, but also has far-reaching effects on the family. Additionally, biological relatives have an increased genetic risk of developing the condition themselves. This review aimed to identify the psychological and social impacts of YOD in the family, for asymptomatic relatives.

Methods: A systematic review of key databases for empirical studies about the lived experience of biological relatives at risk for YOD was performed. Data was collated and interpreted via narrative synthesis.

Results: The majority of the nineteen included studies were qualitative and explored the experiences of children with a parent with YOD. Five themes were developed: (1) Onset of YOD disrupts family functioning (2) Emotional impact is significant and varied (3) Uncertain future (due to uncertainty of diagnosis, care-giving responsibilities, and their own increased genetic risk) (4) Lack of visibility in health care and society (5) Coping strategies include physical/cognitive distancing, and emotion-focused coping.

Conclusion: Our findings demonstrate a diagnosis of YOD significantly impacts the lives of relatives, yet their experiences and needs often go unnoticed.

Practice Implications: We present a practical framework of questions and strategies for care of relatives, mapped to the self-regulation model of genetic counselling.

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Source
http://dx.doi.org/10.1016/j.pec.2022.107585DOI Listing

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