TABLE 2.
Main characteristics of the included studies
| Author/year | Country | Design | Children | Parents | Measures | Key results | |||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Gender | Mean age (range) | Living arrangement | Gender | Mean age (range) | Care setting | Diagnosis | |||||
| Allen et al. (2009) | UK | Q, CS | F 7, M 5 | 19 (13–24) | FH 12 | M 7 | 56 (51–64) | H 5, RC 2 | AD 3, FTD 2, mixed 1, VD 1 | Semi‐structured interview | Five themes: damage of dementia; reconfiguration of relationships; strain; caring; coping. Overarching theme: one day at a time |
| Aslett et al. (2017) | UK | Q, CS | F 3, M 2 | 31 (23–35) | OH 3, FH 2 | F 2, M 3 | 60 (52–65) | H 4, RC 1 | AD 3, FTD 2 | Semi‐structured interview | Five themes: changes in relationships with YOD parent; shifts in role and responsibilities; concern for the nonaffected parent; the need for participants to be supported; the personal impact to self of the parental YOD diagnosis |
| Barca et al. (2014) | NO | Q, CS | F 12, M 2 | NS (20‐35) | OH 14 | F 12, M 2 | NS (45– 60+) | H 3, RC 11 | AD 6, FTD 4, mixed 1, NS 3 | Semi‐structured interview | Two themes: experiences in social relationships; experiences and needs related to services. |
| Davies et al. (2000) | US | MM, CS | F 14, M 6 | 28 (16–34) | OH 18, FH 2 | 20 NS | NS | H 20 | AD 20 | Questionnaires: Symptom Checklist‐90 (SCL‐90), Knowledge Questionnaire (KQ), Self‐Control Schedule (SCS); Semi‐structured interview | SCL‐90: highest scores on interpersonal sensitivity, depression, anxiety and hostility; KQ: 72% average score of correct answers; SCS: skills for managing adverse life events were in the normal range. Four stages of sequential resolving: awareness, explanation, attribution, integration |
| Denny et al. (2012) | US | QT, CS | F 17, M 7 | NS (18–35) | NS | F 9, M 14 | NS | NS | FTD 23 | Self‐completed online survey | Diagnosis: 52.4% unaware of the name of their parent's diagnosis. Most common sources of information: well parent (23.8%), parent and Internet (23.8%), Internet (19.0%). Emotions: sadness, anger, scariness, and confusion. Most supportive activities included being with friends, sports, music, staying busy, video games, and staying away from home. Caregiving: 57.9% provided regular or significant care. Some felt stressed, annoyed, angry, while others responsible, helpful and grown up. Most difficulties: behavior problems, loss of past relationship, cognitive symptoms and caregiving. Impact: increased closeness of family relationships and growth in self‐confidence. Support: 72.2% interested in meeting children or teens with similar experience |
| Gelman and Rhames (2016) | US | Q, CS | F 5, M 3 | 18 (15–20) | FH 8 | M 4 | NS | H 4 | AD 3, FTD 1 | Semi‐structured interview | Three themes: abrupt interruption/disruption of child's developmental course; adaptation, coping and growth; lack of YOD information and relevant services |
| Hall & Sikes (2017) | US | Q, L | 22 NS | NS (6–31) | NS | NS | NS | NS | NS | Two to three unstructured interviews over 18 months | Three themes: the process of narrating dementia; “taboo” subjects; portrayals of dementia by people without dementia |
| Hall and Sikes (2018) | US | Q, L | F 16, M 4 | 22 (8−31) | OH 11, FH 6, NS 3 | F 8, M 10 | NS | NS | FTD 8, VD 2, LB 1, PCA 1, NS 6 | Two to three unstructured interviews over 16 months | Three themes: something is amiss “you don't normally put three and a half spoons of sugar in your tea”; navigating the pathway; the unpredictability of dementia |
| Hall and Sikes (2018) | US | Q, L | F 18, M 4 | 20 (6–31) | OH 11, FH 8, NS 3 | F 8, M 11 | NS | NS | FTD 8, VD 2, LB 1, PCA 1, NS 7 | Up to three unstructured interviews over 12 months. Sessions with children under‐10s involved activities such as “my day,” timelines and family trees | Three themes: disruption to existing family practices; continuities; reconceptualization of relationships |
| Hall and Sikes (2020) | US | Q, L | F 19, M 4 | 20 (6‐31) | OH 11, FH 9, NS 3 | F 9, M 13 | NS | NS | NS | Up to three unstructured interviews over 12 months. Sessions with children under‐10s involved play, drawing, family tree and ‘my day’ storytelling activities | Three themes: constructing the life course; being betwixt and between; managing the betwixt and between. |
| Hutchinson et al. (2014) | AU | Q, CS | F 11, M 1 | 24 (19–33) | NS | F 7, M 5 | NS | NS | NS | Semi‐structured interview | Four themes: the emotional toll of caring; keeping the family together; grief and loss; psychological distress |
| Hutchinson et al. (2016) | AU | Q, CS | F 11, M 1 | 24 (19–33) | NS | F 7, M 5 | NS | NS | NS | Semi‐structured interview | Three themes: invisibility; connectivity; being empowered |
| Johannessen et al. (2015) | NO | Q, CS | F 9, M 5 | 24 (18–30) | OH 11, FH 3 | F 5, M 9 | NS | NS | NS | Semi‐structured interview | Four themes and related metaphors: the development and course of the dementia: “my parent is sliding away”; feelings: “emotional chaos”; the transformed relations: “becoming a parent to my parent”; the provision of public services: “a battle” |
| Johannessen et al. (2016) | NO | Q, L | F 9, M 5 | 24 (18–30) | T1: OH 11, FH 3; T2: OH 12, FH 1 (dropout 1) | F 5, M 9 | 61 (57–66) | T1: H 9, RC 5; T2: H 6, RC 7(dropout 1) | NS | Two semi‐structured interviews (T2: 1 year later) | Two themes: detachment; resilience |
| Lövenmarck (2019) | SE | Q, CS | 3 NS | NS (15–25) | NS | 3 NS | NS | NS | NS | Discourse analysis of blogs written by participants who had grown up/lived with a parent diagnosed with dementia (TOT = 371 posts over 6–9 years) | Three themes: parent to your parent(s); orphan with parents; time traveler stuck in time |
| Millenaar et al. (2014) | NE | Q,CS | F 8, M 6 | 21 (15–27) | FH 14 | F 3, M 8 | 53 (47–62) | H 11 | AD 5, FTD 4, VD 1, NS 1 | Semi‐structured interview | Three themes: the impact of dementia on daily life; coping with the disease; the need for care and support |
| Nichols et al. (2013) | US, CA | Q, CS | F 10, M 4 | 14 (11–18) | FH 14 | F 1, M 6 | NS | H 7 | FTD 7 | Focus group | Seven themes: emotional impact of living with a parent with FTD; caregiving; coping; symptoms of FTD; diagnosis; relationships; support |
| Sikes and Hall (2016) | UK | Q, L | F 16, M 3 | 22 (8–31) | OH 10, FH 6, NS 3 | F 8, M 9 | NS | NS | FTD 7, VD 2, LB 1, PCA 1, NS 6 | Unstructured interviews (at least two) | One theme: not the same person narratives |
| Sikes and Hall (2017) | UK | Q, L | F 18, M 4 | 20 (6–31) | OH 11, FH 8, NS 3 | F 8, M 11 | NS | NS | AD 7, FTD 8, VD 2, LB 1, PCA 1 | Unstructured interviews (at least two) over 18 months. Sessions with children under‐10s involved play, drawing, family tree and “my day” storytelling activities | Six themes: diagnosis; ongoing loss; life on hold; missing landmark events; envy; coping or not |
| Sikes and Hall (2018) | UK | Q, L | 24 NS | NS (6–31) | NS | NS | NS | NS | NS | Up to three unstructured interviews over 18 months. Sessions with children under‐10s involved play, drawing, family tree and “my day” storytelling activities | Five themes: locating parental dementia with reference to educational milestones; dementia‐specific challenges; education as an escape/coping mechanism; dementia and educational choices; educational institutions' responses |
| Svanberg et al. (2010) | UK | MM, CS | F 6, M 6 | 14 (11‐18) | NS | F 2, M 7 | NS | H 5, RC 2 (deceased 2) | AD 5, FTD 3, VD 1 | Questionnaires: Recent Mood and Feelings Questionnaire (MFQ), Zarit Burden Interview‐short (ZBI‐short), Resilience Scale (RS); Semistructured interview | MFQ: 33% had a mood disorder; ZBI‐short: 58% high levels of burden; RS: 83% moderate levels of resilience. Four themes: discovering dementia; developing a new relationship; learning to live with it; going through it together. Three stages of adaptation: grief, emotional detachment, increased maturity |
Abbreviations: AD, Alzheimer’s disease; AU, Australia; CA, Canada; CS, cross‐sectional; F, females; FH, family home; FTD, frontotemporal dementia; H, home; L, longitudinal; LB, Lewy bodies; M, males; MM, mixed methodology; NE, Netherlands; NO, Norway; NS, not specified; OH, own house; PCA, posterior cortical atrophy; Q, qualitative; QT, quantitative; RC, residential care; SE, Sweden; UK, United Kingdom; US, United States; VD, vascular dementia.