Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.
AbmaT. A.SchrijverJ. (2019). “Are we famous or something?” Participatory Health Research with children using photovoice. Educational Action Research, 28(3), 405–426. https://doi.org/10.1080/09650792.2019.1627229
2.
AldridgeJ.BeckerS. (2003). Children caring for parents with mental illness (p. 61): Policy Press.
3.
AslettH. J.HuwsJ. C.WoodsR. T.Kelly-RhindJ. (2017). “This is killing me inside”: The impact of having a parent with young-onset dementia. Dementia, 18(3), 1089–1107. https://doi.org/10.1177/1471301217702977
4.
BaxterP.JackS. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13(4), 544–559. https://doi.org/10.46743/2160-3715/2008.1573
5.
BlackB. S.RabinsP. V.SugarmanJ.KarlawishJ. H. (2010). Seeking assent and respecting dissent in dementia research. The American Journal of Geriatric Psychiatry, 18(1), 77–85. https://doi.org/10.1097/JGP.0b013e3181bd1de2
BukowskiK.BuetowS. (2011). Making the invisible visible: A photovoice exploration of homeless women’s health and lives in central Auckland. Social Science & Medicine (1982), 72(5), 739–746. https://doi.org/10.1016/j.socscimed.2010.11.029
8.
CacchioneP. Z. (2011). People with dementia: Capacity to consent to research participation. Clinical Nursing Research, 20(3), 223–227. https://doi.org/10.1177/1054773811415810
9.
CandaE. R. (2013). Filial piety and care for elders: A contested Confucian virtue reexamined. Journal of Ethnic & Cultural Diversity in Social Work, 22(3-4), 213–234. https://doi.org/10.1080/15313204.2013.843134
10.
CartwrightA. V.StonerC. R.PioneR. D.SpectorA. (2021). The experiences of those affected by parental young onset dementia: A qualitative systematic literature review. Dementia, 20(7), 2618–2639. https://doi.org/10.1177/1471301220988231
11.
CatalaniC.MinklerM. (2010). Photovoice: A review of the literature in health and public health. Health Education & Behavior, 37(3), 424–451. https://doi.org/10.1177/1090198109342084
12.
ChaoR. K. (1994). Beyond parental control and authoritarian parenting style: Understanding Chinese parenting through the cultural notion of training. Child Development, 65(4), 1111–1119. https://doi.org/10.1111/j.1467-8624.1994.tb00806.x
13.
ChevrierB.LamoreK.UntasA.DorardG. (2022). Young adult carers’ identification, characteristics, and support: A systematic review. Frontiers in Psychology, 13(13), Article 990257. https://doi.org/10.3389/fpsyg.2022.990257
14.
ChiricoI.OttoboniG.ValenteM.ChattatR. (2021). Children and young people’s experience of parental dementia: A systematic review. International Journal of Geriatric Psychiatry, 36(7), 975–992. https://doi.org/10.1002/gps.5542
15.
ClarkeV.BraunV. (2013). Teaching thematic analysis: Overcoming challenges and developing strategies for effective learning. The Psychologist, 26(2), 120–123.
ColorafiK. J.EvansB. (2016). Qualitative descriptive methods in health science research. Health Environments Research & Design Journal, 9(4), 16–25. https://doi.org/10.1177/1937586715614171
DrewS. E.DuncanR. E.SawyerS. M. (2010). Visual storytelling: A beneficial but challenging method for health research with young people. Qualitative Health Research, 20(12), 1677–1688. https://doi.org/10.1177/1049732310377455
FlyvbjergB. (2011). Case study. The Sage Handbook of Qualitative Research, 4, 301–316.
22.
García-ToroM.Sánchez-GómezM. C.Madrigal ZapataL.LoperaF. J. (2018). “In the flesh”: Narratives of family caregivers at risk of early-onset familial Alzheimer’s disease. Dementia, 19(5), 1474–1491. https://doi.org/10.1177/1471301218801501
23.
GelmanC.RhamesK. (2018). “I have to be both mother and father”: The impact of young-onset dementia on the partner’s parenting and the children’s experience. Dementia, 19(3), 676–690. https://doi.org/10.1177/1471301218783542
24.
GelmanC. R.RhamesK. (2016). In their own words: The experience and needs of children in younger-onset Alzheimer’s disease and other dementias families. Dementia, 17(3), 337–358. https://doi.org/10.1177/1471301216647097
25.
GubaE. G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. ECTJ, 29(2), 75–91. https://doi.org/10.1007/bf02766777
26.
HallM.SikesP. (2017). “It would be easier if she’d died”: Young people with parents with dementia articulating inadmissible stories. Qualitative Health Research, 27(8), 1203–1214. https://doi.org/10.1177/1049732317697079
27.
HallM.SikesP. (2018). How do young people “do” family where there is a diagnosis of dementia?Families, Relationships and Societies, 7(2), 207–225. https://doi.org/10.1332/204674316x14818999694306
28.
HallM.SikesP. (2020). “It’s just limboland”: Parental dementia and young people’s life courses. The Sociological Review, 68(1), 242–259. https://doi.org/10.1177/0038026119874280
29.
HamiltonM. G.AdamsonE. (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16(1), 101–117. https://doi.org/10.1080/13676261.2012.710743
HelvikA. S.HvidstenL.EngedalK.KerstenH.DouradoM. C. N.JohannessenA. (2024). Living with young-onset dementia in the family—a mixed method study. Aging & Mental Health, 28(2), 254–261. https://doi.org/10.1080/13607863.2023.2243585
32.
HoW. C.RochelleT. L.YuenW. K. (2011). “We are not sad at all” Adolescents talk about their “city of sadness” through photovoice. Journal of Adolescent Research, 26(6), 727–765. https://doi.org/10.1177/0743558410391255
33.
HutchinsonK.RobertsC.DalyM.BulsaraC.KurrleS. (2015). Empowerment of young people who have a parent living with dementia: A social model perspective. International Psychogeriatrics, 28(4), 657–668. https://doi.org/10.1017/s1041610215001714
34.
HutchinsonK.RobertsC.KurrleS.DalyM. (2014). The emotional well-being of young people having a parent with younger onset dementia. Dementia, 15(4), 609–628. https://doi.org/10.1177/1471301214532111
35.
JohannessenA.EngedalK.ThorsenK. (2015). Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors. Journal of Multidisciplinary Healthcare, 8, 245–254. https://doi.org/10.2147/jmdh.s84069
36.
JohnsonG. A. (2011). A child’s right to participation: Photovoice as methodology for documenting the experiences of children living in Kenyan Orphanages. Visual Anthropology Review, 27(2), 141–161. https://doi.org/10.1111/j.1548-7458.2011.01098.x
37.
KangY.LiuW.DingD.WangJ.ZhaoQ.WangJ. (2022). Qualitative study on the dyadic experience of patients with young-onset dementia and their caregivers. Chinese Journal of Nursing, 57(13), 1591–1598. https://doi.org/10.3761/j.issn.0254-1769.2022.13.009
38.
KeyserlingkE. W.GlassK.KoganS.GauthierS. (1995). Proposed guidelines for the participation of persons with dementia as research subjects. Perspectives in Biology and Medicine, 38(2), 317–362. https://doi.org/10.1353/pbm.1995.0049
39.
KoopmansR.RosnessT. (2014). Young onset dementia—what does the name imply?International Psychogeriatrics, 26(12), 1931–1933. https://doi.org/10.1017/s1041610214001574
40.
LiuJ.WuB.DongX. (2019). Psychological well-being of Chinese immigrant adult-child caregivers: How do filial expectation, self-rated filial performance, and filial discrepancy matter?Aging & Mental Health, 24(3), 489–496. https://doi.org/10.1080/13607863.2018.1544210
41.
Losada-BaltarA.FalzaranoF.HancockD.Márquez-GonzálezM.PillemerK.Huertas-DomingoC.Jiménez-GonzaloL.Fernandes-PiresJ. A.CzajaS. J. (2023). Cross-national analysis of the associations between familism and self-efficacy in family caregivers of people with dementia: Effects on burden and depression. Journal of Aging and Health, 8982643231193579. https://doi.org/10.1177/08982643231193579
42.
LwiS. J.FordB. Q.LevensonR. W. (2022). Cultural differences in caring for people with dementia: A pilot study of concern about losing face and loneliness in Chinese American and European American caregivers. Clinical Gerontologist, 46(2), 207–222. https://doi.org/10.1080/07317115.2022.2137448
43.
MahmoodA.ChaudhuryH.MichaelY. L.CampoM.HayK.SarteA. (2012). A photovoice documentation of the role of neighborhood physical and social environments in older adults’ physical activity in two metropolitan areas in North America. Social Science & Medicine (1982), 74(8), 1180–1192. https://doi.org/10.1016/j.socscimed.2011.12.039
44.
MalkaM.HussE.BendarkerL.MusaiO. (2018). Using photovoice with children of addicted parents to integrate phenomenological and social reality. The Arts in Psychotherapy, 60(60), 82–90. https://doi.org/10.1016/j.aip.2017.11.001
45.
Masterson-AlgarP.WilliamsS. (2020). “Thrown into the deep end”: Mapping the experiences of young people living in a family affected by a neurological condition. Qualitative Health Research, 30(5), 717–729. https://doi.org/10.1177/1049732319900498
46.
MillenaarJ. K.van VlietD.BakkerC.Vernooij-DassenM. J. F. J.KoopmansR. T. C. M.VerheyF. R. J.de VugtM. E. (2013). The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. International Psychogeriatrics, 26(12), 2001–2010. https://doi.org/10.1017/s1041610213001890
47.
NovekS.Morris-OswaldT.MenecV. (2011). Using photovoice with older adults: Some methodological strengths and issues. Ageing and Society, 32(3), 451–470. https://doi.org/10.1017/s0144686x11000377
48.
PangR. C.LeeD. T. (2019). Finding positives in caregiving: The unique experiences of Chinese spousal caregivers of persons with young-onset dementia. Dementia, 18(5), 1615–1628. https://doi.org/10.1177/1471301217724026
49.
ShifrenK.KachorekL. V. (2003). Does early caregiving matter? The effects on young caregivers’ adult mental health. International Journal of Behavioral Development, 27(4), 338–346. https://doi.org/10.1080/01650250244000371
50.
SikesP.HallM. (2017). “Every time I see him he’s the worst he’s ever been and the best he’ll ever be”: Grief and sadness in children and young people who have a parent with dementia. Mortality, 22(4), 324–338. https://doi.org/10.1080/13576275.2016.1274297
51.
SikesP.HallM. (2018). The impact of parental young onset dementia on children and young people’s educational careers. British Educational Research Journal, 44(4), 593–607. https://doi.org/10.1002/berj.3448
52.
SpreadburyJ.KippsC. (2016). Measuring younger onset dementia: A comprehensive literature search of the quantitative psychosocial research. Dementia, 18(1), 135–156. https://doi.org/10.1177/1471301216661427
SvanbergE.StottJ.SpectorA. (2010). “Just helping”: Children living with a parent with young onset dementia. Aging & Mental Health, 14(6), 740–751. https://doi.org/10.1080/13607861003713174
55.
WangC.BurrisM. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369–387. https://doi.org/10.1177/109019819702400309
56.
WangC. C. (1999). Photovoice: A participatory action research strategy applied to women’s health. Journal of Women's Health, 8(2), 185–192. https://doi.org/10.1089/jwh.1999.8.185
57.
WangN.BrookeJ. (2020). The experience of children with parents diagnosed with young onset dementia: A systematic literature review. British Journal of Neuroscience Nursing, 16(4), 165–173. https://doi.org/10.12968/bjnn.2020.16.4.165
58.
WigginsM.McEwenA.SextonA. (2022). Young-onset dementia: A systematic review of the psychological and social impact on relatives. Patient Education and Counseling, 107(107585), Article 107585. https://doi.org/10.1016/j.pec.2022.107585
59.
WilsonN.DashoS.MartinA. C.WallersteinN.WangC. C.MinklerM. (2007). Engaging young adolescents in social action through photovoice. The Journal of Early Adolescence, 27(2), 241–261. https://doi.org/10.1177/0272431606294834
60.
WuM. Y. (2012). The concept of guan in the Chinese parent-child relationship. In Chin-Chun Y (Ed.), The psychological well-being of East Asian youth (pp. 29–49): Springer.
61.
WuX. (2023). Negotiating filial care in transitions: An ethnographic study of family involvement in China’s nursing homes. The Journal of Chinese Sociology, 10(1), 9. https://doi.org/10.1186/s40711-023-00187-4
62.
ZhangY.XiaoL.WangJ. (2023). Chinese diaspora caregivers’ experiences in dementia care in high-income countries: A systematic review. Dementia, 22(5), 1115–1137. https://doi.org/10.1177/14713012231169830
