Children and young people's experience of parental dementia: A systematic review

Abstract

Objectives Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care. Design A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out. Results Twenty‐one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a “whole family” approach. Conclusions The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population.

Use of technology by people with dementia and informal carers during COVID‐19: A cross‐country comparison

“…The pandemic indeed could represent an additional stressor even for informal carers, 30,31 who already provide most of the care during non-pandemic times. 32,33 Whilst there are several studies on the efficacy of psychosocial interventions, [34][35][36] there is emerging evidence supporting its use in a digital format. 20,21 However, broader research is needed to precisely establish what online activities work, for which populations and conditions, taking account of equity and quality.…”

Needs-appropriate services for people with young onset dementia: The perspectives of healthcare professionals

“…Indeed, people with YOD are often young spouses in the middle of their lives: they used to work and look after their old parents or their children, whose capability to be independent is still insufficient, in most cases. As a consequence of such a diagnosis and prognosis, sons and daughters are prompted to review their life plans, and spouses have to reprogramme many of their habits to adapt to the new situation (Van Vliet et al, 2010; Chirico et al, 2021b).…”

“…However, when counselling paths are available, people with YOD and their families can take advantage of such facilities (Adelman et al, 2014; Brodaty et al, 2003; Richardson et al, 2016). A recent study aimed at exploring the attempts of children of people with YOD to cope with dementia-related difficulties indicates that children with higher levels of empowerment showed higher levels of well-being than the ones recorded at the disease onset time (Johannessen et al, 2016a; Chirico et al, 2021b). In this light, counselling needs to be focussed on resilience and empowerment by accepting the situation and obtaining psychosocial support.…”

Childhood perspectives of parental young onset dementia: A qualitative data synthesis

“…To the best of our knowledge, there have been six analyses of the literature on children’s and young adults experiences of having a parent with young onset dementia ( Gelman & Greer, 2011 ; Poole & Patterson 2020 ; Wang & Brooke, 2020 ; Cartwright et al, 2021 ; Chirico et al, 2021 ; Grundberg et al, 2021 ) with one review ( Wang & Brooke, 2020 ) synthesising purely qualitative data. This is likely to lead to a significant gap in the research in relation to the perspectives of children and young adults with a parent with young onset dementia.…”