Early-onset Alzheimer’s disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients’ experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients’ children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children’s needs is discussed.
Alzheimer’s Association.Early-onset issues. 2009. http://www.alz.org/professionals_and_researchers_early_onset.asp . Accessed October 12, 2009.
2.
Alzheimer’s Association.2010 Alzheimer’s disease facts and figures. 2010. http://www.alz.org/documents_custom/report_alzfactsfigures2010.pdf. Accessed November 20, 2010.
3.
Centers for Disease Control and Prevention.Alzheimer’s disease. 2008. http://www.cdc.gov/aging/healthybrain/alzheimers.htm . Accessed October 23, 2009.
4.
Arai A., Matsumoto T., Ikeda M., Arai Y.Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia . Int J Geriatr Psychiatry. 2007;22(12):1255-1261.
5.
Freyne A., Kidd N., Coen R., Lawlor BABurden in carers of dementia patients: higher levels in carers of younger sufferers. Int J Geriatr Psychiatry. 1999;14(9):784-788.
6.
Takano M., Arai H.Gender difference and caregivers’ burden in early-onset Alzheimer’s disease. Psychogeriatrics. 2005;5(3): 73-77.
7.
Smith G.Early-onset Alzheimer’s: when symptoms begin before 65. Mayo Clinic Web site; 2009. http://www.mayoclinic.com/health/alzheimers/AZ00009. Accessed October 23, 2009.
8.
Owens-Kane S., Chadiha LAFamily caregiving. In: Mizrahi T, Davis L, eds. Encyclopedia of Social Work . 20th ed. New York, NY : Oxford University Press;2008 :191-197.
9.
Shifren K., Kachorek LVDoes early caregiving matter? The effects on young caregivers’ adult mental health. Int J Behav Dev. 2003 ;27(4):338-346.
10.
Beach DLFamily caregiving: the positive impact on adolescent relationships . Gerontologist. 1997;37(2):233-238.
11.
Shifren K.Early caregiving and adult depression: good news for young caregivers . Gerontologist. 2001;41(2):188-190.
12.
Siskowski C.Young caregivers: effect of family health situations on school performance. J Sch Nurs. 2006;22(3):163-169.
13.
National Alliance for Caregiving (NAC) & The United Hospital Fund.Young caregivers in the U.S. 2005 . http://www.caregiving.org/data/youngcaregivers.pdf . Accessed September 2, 2008.
14.
Pakenham KI , Bursnall S., Chiu J., Cannon T., Okochi M.The psychosocial impact of caregiving on young people who have a parent with an illness or disability: comparisons between young caregivers and noncaregivers. Rehabil Psychol. 2006; 51(3):113-126.
15.
Banks P., Cogan N., Riddell S.Does the covert nature of caring prohibit the development of effective services for young carers? Br J Guid Counc. 2002;30(3):229-246.
16.
Keigher S., Zabler B., Robinson N., Fernandez A., Stevens PEYoung caregivers of mothers with HIV: need for supports. Child Youth Serv Rev. 2005;17(8):881-904.
17.
Pakenham KI , Chiu J., Bursnall S., Cannon T.Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. J Health Psychol. 2007;12(1):89-102.
18.
Warren J.Young carers: Conventional or exaggerated levels of involvement in domestic and caring tasks? Childhood & Society. 2007; 21(2): 136-146.
19.
Fox A.Young carers. Community Pract. 2006 ;79(10):313-315.
20.
Becker S.Global perspectives on children’s unpaid caregiving in the family: research and policy on ‘young carers’ in the UK, Australia, the USA and Sub-Saharan Africa. Glob Soc Policy. 2007; 7(1):23-50.
21.
Aldridge J. , Becker S.Children as carers. Arch Dis Child. 1993; 69(4):459-462.
22.
Aldridge J. , Becker S.Punishing children for caring: the hidden cost of young carers. Child Soc. 1993;7(4):376-387.
23.
Dearden C., Becker S.The experiences of young carers in the UK: the mental health issues . Ment Health Care. 1999;2(8): 273-276.
24.
Hoefnagels C., Meesters C., Simenon J.Social support as predictor of psychopathology in the adolescent offspring of psychiatric patients. J Child Fam Stud. 2007;16(1):87-101.
25.
Liebson E., Rauch P., Graff S., Folstein M.Early-onset dementia: diagnostic considerations and implications for families . Harv Rev Psychiatry. 2005;13(2):102-111.
26.
Szinovacz M.Caring for a demented relative at home: effects on parent-adolescent relationships and family dynamics. J Aging Stud. 2003;17(4):445-472.
27.
Lieberman MA , Fisher L.The impact of a parent’s dementia on adult offspring and their spouses: the contribution of family characteristics . J Ment Health Aging. 1999;5(3):207-222.
28.
Haley WE, Bailey S.Research on family caregiving in Alzheimer’s disease: implications for practice and policy. In: Vellas B, Fitten JL, eds. Research Practice in Alzheimer’s Disease. Paris, France: Serdi Publisher; 1999:321-332.
29.
Logsdon RGDementia: psychosocial interventions for family caregivers. Lancet. 2008;372(9634):182-183.
30.
Mittelman MS , Roth DL, Clay OJ, Haley WEPreserving health of Alzheimer caregivers: impact of a spouse caregiver intervention . Am J Geriatr Psychiatry. 2007;15(9):780-789.
31.
Pinquart M. , Sörensen S.Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250-267.
32.
Creasey GL, Jarvis PAGrandparents with Alzheimer’s disease: effects of parental burden on grandchildren. Fam Ther. 1989;16(1):79-85.
33.
Creasey GL, Myers BJ, Epperson MJ, Taylor J.Grandchildren of grandparents with Alzheimer’s disease: perceptions of grandparents, family environment, and the elderly. Merrill Palmer Q. 1989;35(2):227-237.
34.
Piercy KW, Chapman JGAdoping the caregiver role: a family legacy. Fam Relat . 2001;50(4):386-393.
35.
Beardslee WR , Versage EM, Gladstone TRGChildren of affectively ill parents: a review of the past 10 years. J Am Acad Child Adolesc Psychiatry. 1998;37(11):1134-1141.
36.
Pedersen S. , Revenson TAParental illness, family functioning, and adolescent well-being: a family ecology framework to guide research. J Fam Psychol. 2005;1(3):404-419.
37.
Bolas H.The well-being of young people who care for a dependent relative: an interpretative phenomenological analysis. Psychol Health . 2007;22(7):829-850.
38.
Steck B., Grether A., Amsler F., et al. Disease variables and depression affecting the process of coping in families with a somatically ill parent. Psychopathology . 2007;40(6):394-404.
39.
Bauman LJ, Camacho S., Silver EJ, Hudis J., Draimin B.Behavioral problems in school-aged children of mothers with HIV/AIDS . Clin Child Psychol Psychiatry. 2002;7(1):39-54.
40.
Thastum M., Johansen MB, Gubba L., Olesen LB, Romer G.Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer. Clin Child Psychol Psychiatry . 2008;13(1):123-138.
41.
Focht-Birkerts L., Beardslee WRA child’s experience of parental depression: encouraging relational resilience in families with affective illness . Fam Process. 2000;39(4):417-434.
42.
Gladstone BM , Boydell KM, McKeever P.Recasting research into children’s experiences of parental mental illness: beyond risk and resilience. Soc Sci Med. 2006;62(10):2540-2550.
43.
Stein JA, Rotheram-Borus MJ, Lester P.Impact of parentification on long-term outcomes among children of parents with HIV/ AIDS. Fam Process. 2007;46(3):317-334.
44.
Mittelman MS, Epstein C., Pierzchala A.Counseling the Alzheimer’s Caregiver. Chicago, IL : American Medical Association; 2003.
45.
Bengtson VL , Allen KRThe life course perspective applied to families over time. In: Boss PG, Doherty WJ, LaRossa R , Schumm WR, teinmetz SK, eds. Sourcebook of Family Theories and Methods . New York, NY : Plenum; 1993:469-504.
46.
Whitchurch GG, Constantine LLSystems theory. In: Boss PG, Doherty WJ, LaRossa R, Schumm WR, teinmetz SK, eds. Sourcebook of Family Theories and Methods. New York, NY : Plenum ; 1993:325-352.
47.
Minuchin S. , Fishman HCFamily Therapy Techniques. Cam-bridge, MA: Harvard University Press; 1981.
48.
Fisher L., Lieberman MAAlzheimer’s disease: the impact of the family on spouses, offspring, and inlaws. Fam Process. 1994; 33(3):305-325.
49.
Pinquart M. , Sörensen S.Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62(2):P126-P137.
50.
Dellmann-Jenkins M., Blankemeyer M., Pinkard O.Young adult children and grandchildren in primary caregiver roles to older relatives and their service needs. Fam Relat. 2000;49(2): 177-186.
51.
Fruhauf CA, Jarrott SE, Allen KRGrandchildren’s perceptions of caring for grandparents. J Fam Issues. 2006;27(7): 887-911.
