To compare the quality of life, burden, and depressive symptoms of caregivers of individuals with young-onset dementia (YOD) and late-onset dementia (LOD).
Methods:
Using a cross-sectional design, a convenience sample of 110 dyads of individuals with dementia and their caregivers, all living in the community, was included. The care recipients completed assessments about cognition, quality of life, and awareness of disease. Caregivers’ quality of life, resilience, depressive and anxiety symptoms, hopelessness, and burden of care were assessed.
Results:
A significant difference was found in caregivers’ burden and depressive symptoms according to the age of onset. However, there was no difference in caregivers’ quality of life between YOD and LOD groups. In both groups, a linear regression analysis indicated that caregivers’ perspective of quality of life of care recipient and caregivers’ hopelessness were associated with their quality of life. In addition, in the LOD group, caregivers’ burden was associated with their perspective of the quality of life of care recipient, type of kinship, and presence of emotional problems. In the YOD group, caregivers’ burden was associated with duration of caregiving role, cohabitating with care recipient, and their anxiety symptoms. Caregivers’ depressive symptoms were associated with anxiety symptoms in the YOD group, whereas hopelessness was associated with caregivers’ depressive symptoms in both the groups.
Conclusion:
Our findings suggest that the factors that affect quality of life, burden, and depressive symptoms of caregivers of individuals with LOD differ from those that affect the caregivers of individuals with YOD.
Department of Health. Living Well With Dementia: A National Dementia Strategy. Department of Health; 2009.
2.
RossorMNFoxNCMummeryCJSchottJMWarrenJD. The diagnosis of young-onset dementia. Lancet Neurol. 2010;9(8):793–806. doi:10.1016/S1474-4422(10)70159-9
3.
HarveyRJSkelton-RobinsonMRossorMN. The prevalence and causes of dementia in people under the age of 65 years. J Neurol Neurosurg Psychiatry. 2003;74(9):1206–1209. doi:10.1136/jnnp.74.9.1206
4.
LogsdonRGGibbonsLEMcCurrySMTeriL. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Ment Health Aging. 1999;5:21–32.
5.
BruvikFKUlsteinIDRanhoffAHEngedalK. The quality of life of people with dementia and their family carers. Dement Geriatr Cogn Disord. 2012;34(1):7–14. doi:10.1159/000341584
6.
SousaMFBSantosRLArcoverdeC, et al.Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr. 2013;25(07):1097–1105. doi:10.1017/S1041610213000410
7.
SantosRLSousaMFSimões-NetoJP, et al.Caregivers’ quality of life in mild and moderate dementia. Arq Neuropsiquiatr. 2014;72(12):931–937. doi:10.1590/0004-282X20140155
8.
NogueiraMMNetoJPSousaMF, et al.Spouse-caregivers’ quality of life in Alzheimer’s disease. Int Psychogeriatr. 2015;27(5):837–845. doi:10.1017/S1041610214002646
9.
LavretskyHSiddarthPIrwinMR. Improving depression and enhancing resilience in family dementia caregivers: a pilot randomized placebo-controlled trial of escitalopram. Am J Geriatr Psychiatry. 2010; 18(2):154–162. doi:10.1097/JGP.0b013e3181beab1e
10.
ContadorIFernández-CalvoBPalenzuelaDLMiguéisSRamosF.Prediction of burden in family caregivers of patients with dementia: a perspective of optimism based on generalized expectancies of control. Aging Ment Health. 2012;16(6):675–682. doi:10.1080/13607863.2012.684666
11.
NovelliMMNitriniRCaramelliP. Validation of the Brazilian version of the quality of life scale for patients with Alzheimer’s disease and their caregivers (QOL-AD). Aging Ment Health. 2010;14(5):624–631. doi:10.1080/13607861003588840
12.
LawtonMP. Quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 1994;8:138–150. doi:10.1097/00002093-199404000-00015
13.
ZaritSHReeverKEBach-PetersonJ. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655. doi:10.1093/geront/20.6.649
14.
KasuyaRTPolgar-BaileyPTakeuchiR.Caregiver burden and burnout: a guide for primary care physicians. Postgrad Med. 2000;108(7):119–123. doi:10.3810/pgm.2000.12.1324
15.
PlattS. Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med. 1985;15(2):383–393. doi:10.1017/S0033291700023680
16.
CovinskyKENewcomerRFoxPWoodJSandsLDaneKYaffeK. Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. J Gen Intern Med. 2003;18(12):1006–1014. doi:10.1111/j.1525-1497.2003.30103.x
17.
Van VlietDde VugtMEBakkerCKoopmansRTVerheyFR. Impact of early onset dementia on caregivers: a review. Int J Geriatr Psychiatry. 2012;25(11):1091–1100. doi:10.1002/gps.2439
18.
BakkerCde VugtMEVernooij-DassenMvan VlietDVerheyFRKoopmansRT. Needs in early onset dementia: a qualitative case from the Need YD study. Am J Alzheimers Dis Other Demen. 2010;25(8):634–640. doi:10.1177/1533317510385811
19.
KimuraNRSBaptistaMATSantosRL, et al.Caregivers’ perspectives of quality of life of people with young-and late-onset Alzheimer disease. J Geriatr Psychiatry Neurol. 2018;31(2):76–83. doi:10.1177/0891988718759601
20.
HvidstenLEngedalKSelbaekG, et al.Quality of life of family carers of persons with young-onset compared to late-onset dementia. Aging Ment Health. 2019;20:1–8. doi:10.1080/13607863.2019.1617245
21.
GronningHKristiansenSDyreDRahmaniAGyllenborgJHoghP. Caregiver burden and psychosocial services in patients with early and late onset Alzheimer’s disease. Dan Med J. 2013;60(7):A4649.
22.
LaunerLJAndersenKDeweyME, et al.Rates and risk factors for dementia and Alzheimer’s disease results from EURODEM pooled analyses. Neurology. 1999;52(1):78–84. doi:10.1212/wnl.52.1.78
23.
LambertMABickelHPrinceM, et al.Estimating the burden of early onset dementia; systematic review of disease prevalence. Eur J Neurol. 2014;21(4):563–569. doi:10.1111/ene.12325
24.
MillenaarJKBakkerCKoopmansRTVerheyFRKurzAde VugtME. The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. Int J Geriatr Psychiatry. 2016;31(12):1261–1276. doi:10.1002/gps.4502
25.
MaiaALGodinhoCFerreiraED, et al.Application of the Brazilian version of the CDR scale in samples of dementia patients. Arq Neuropsiquiatr. 2006;64(2B):485–489. doi:10.1590/S0004-282X2006000300025
26.
BertolucciPHBruckiSMCampacciSRJulianoY. The Mini-Mental State Examination in a general population: impact of educational status. Arq Neuropsiquiatr. 1994;52(1):1–7. doi:10.1590/S0004-282X1994000100001
27.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR. 4th ed(Text Revision). American Psychiatric Publishing; 2000.
28.
NitriniRCaramelliPBottinoCMCDamascenoBPBruckiSMDAnghinahR. Diagnóstico de doença de Alzheimer no Brasil: avaliação cognitiva e funcional. Arq Neuropsiquiatr. 2005;63:720–727. doi:10.1590/S0004-282X2005000400034
29.
PortugalMGCoutinhoESAlmeidaC, et al.Validation of Montgomery-Åsberg rating scale and Cornell scale for depression in dementia in Brazilian elderly patients. Int Psychogeriatr. 2012;24(8):1291–1298. doi:10.1017/S1041610211002250
30.
CamozzatoALKochhannRSimeoniC, et al.Reliability of the Brazilian Portuguese version of the neuropsychiatric inventory (NPI) for patients with Alzheimer’s disease and their caregivers. Int Psychogeriatr. 2008;20(2):383–393. doi:10.1017/S1041610207006254
31.
DouradoMCNMograbiDCSantosRL, et al.Awareness of disease in dementia: factor structure of the assessment scale of psychosocial impact of the diagnosis of dementia. J Alzheimer’s Dis. 2014;41(3):947–956. doi:10.3233/JAD-14018
32.
ScazufcaM. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Rev Bras Psiquiatria. 2002;24(1):12–17. doi:10.1590/S151644462002000100006
33.
CunhaJA. Manual Da Versão Em Português Das Escalas Beck. Casa do Psicólogo; 2001.
34.
PesceRPAssisSGAvanciJQSantosNCMalaquiasJVCarvalhaesR. Cross-cultural adaptation, reliability and validity of the resilience scale. Cad Saude Publica. 2005;21(2):436–448. doi:10.1590/s0102-311x2005000200010
35.
DouradoMCSousaMFSantosRL, et al.Quality of life in mild dementia: patterns of change in self and caregiver ratings over time. Rev Bras Psiquiatr. 2015;38:294–300. doi:10.1590/1516-4446-2014-1642
36.
AbramsonLYMetalskyGIAlloyLB. Hopelessness depression: a theory-based subtype of depression. Psychol Rev. 1989;96(2):358–372.
37.
BandeiraDRPawlowskiJGonçalvesTRHilgertJBBozzettiMCHugoFN. Psychological distress in Brazilian caregivers of relatives with dementia. Aging Ment Health. 2007;11(1):14–19. doi:10.1080/13607860600640814
38.
Conde-SalaJLGarre-OlmoJTurró-GarrigaOVilalta-FranchJLópez-PousaS.Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: an exploratory comparative design. Int J Nurs Stud. 2010;47(10):1262–1273. doi:10.1016/j.ijnurstu.2010.03.001
39.
AraiAMatsumotoTIkedaMAraiY. 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. doi:10.1002/gps.1935
40.
KimHChangMRoseKKimS. Predictors of caregiver burden in caregivers of individuals with dementia. J Adv Nurs. 2012;68(4):846–855. doi:10.1111/j.1365-2648.2011.05787.x
41.
TortiFMJrGwytherLPReedSDFriedmanJYSchulmanKA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord. 2004;18(2):99–109. doi:10.1097/01.wad.0000126902.37908.b2
42.
ChangHYChiouCJChenNS. Impact of mental health and caregiver burden on family caregivers’ physical health. Arch Gerontol Geriatr. 2010;50(3):267–271. doi:10.1016/j.archger.2009.04.006
43.
HerthK. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs. 1992;17(10):1251–1259. doi:10.1111/j.1365-2648.1992.tb01843.x
44.
BrodatyHDonkinM. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217–228.
45.
KaiserSPanegyresPK. The psychosocial impact of young onset dementia on spouses. Am J Alzheimers Dis Other Demen. 2007;21(6):398–402. doi:10.1177/1533317506293259
46.
WernerPStein-ShvachmanIKorczynAD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21(4):631–636. doi:10.1017/S1041610209009223
