Experiences and Needs of Children Who Have a Parent with Young Onset Dementia: A Meta-ethnographic Review

ABSTRACT

Objectives: The aim of the present review was to critically evaluate empirical evidence regarding the needs and experiences of children who have a parent with young onset dementia (YOD).

Methods: A systematic search of five databases was carried out and the resulting 16 studies were reviewed using a meta-ethnographic approach.

Results: Three main themes arose from the data: ‘Dementia Impact”, which describes how the child experiences the deterioration in their parent and changes to relationships; “Psychological Impact”, comprising the child’s private emotional experiences and the psychological consequences of changes in roles; and “Practical Impact”, detailing the ways in which children adapt their lives in response to parental YOD, and children’s needs for support.

Conclusions: These themes synthesize the existing literature and produce a line of argument explaining the experience of children whose parents have YOD.

Clinical Implications: Information and policies regarding YOD should take account of the experiences of patients’ children and should include targeted support for children of parents with YOD.

KEYWORDS:

• Young onset dementia
• working age dementia
• children
• parents
• needs

Disclosure statement

No potential conflict of interest was reported by the authors.

Supplementary material

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