Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism.
Patients and methods:
Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients’ motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers’ health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI).
Results:
The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients’ neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers’ EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001).
Conclusion:
The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.
SchapiraAHVChaudhuriKRJennerP. Non-motor features of Parkinson disease. Nat Rev Neurosci. 2017;18(7):435–450.
4.
BaronePAntoniniAColosimoC, et al.The PRIAMO study: a multicenter assessment of nonmotor symptoms and their impact on quality of life in Parkinson’s disease. Mov Disord. 2009;24(11):1641–1649.
5.
KlietzMTulkeAMüschenLH, et al.Impaired quality of life and need for palliative care in a German cohort of advanced Parkinson’s disease patients. Front Neurol. 2018;9:120.
6.
MosleyPEMoodieRDissanayakaN. Caregiver burden in Parkinson disease: a critical review of recent literature. J Geriatr Psychiatry Neurol. 2017;30(5):235–252.
7.
GreenwellKGrayWKvan WerschA, et al.Predictors of the psychosocial impact of being a carer of people living with Parkinson’s disease: a systematic review. Parkinsonism Relat Disord. 2015;21(1):1–11.
8.
Carod-ArtalFJMesquitaHMZiomkowskiS, et al.Burden and health-related quality of life among caregivers of Brazilian Parkinson’s disease patients. Parkinsonism Relat Disord. 2013;19(11):943–948.
9.
MearaJMitchelmoreEHobsonP. Use of the GDS-15 geriatric depression scale as a screening instrument for depressive symptomatology in patients with Parkinson’s disease and their carers in the community. Age Ageing. 1999;28(1):35–38.
10.
KlietzMSchnurTDrexelS, et al.Association of motor and cognitive symptoms with health-related quality of life and caregiver burden in a German cohort of advanced Parkinson’s disease patients. Parkinsons Dis. 2020;2020:5184084.
11.
TessitoreAMaranoPModugnoN, et al.Caregiver burden and its related factors in advanced Parkinson’s disease: data from the PREDICT study. J Neurol. 2018;265(5):1124–1137.
12.
SchmotzCRichingerCLorenzlS. High burden and depression among late-stage idiopathic Parkinson disease and progressive supranuclear palsy caregivers. J Geriatr Psychiatry Neurol. 2017;30(5):267–272.
13.
OhYSLeeJELeePHKimJS. Neuropsychiatric symptoms in Parkinson’s disease dementia are associated with increased caregiver burden. J Mov Disord. 2015;8(1):26–32.
14.
ArmstrongNSchupfNGrafmanJHueyED. Caregiver burden in frontotemporal degeneration and corticobasal syndrome. Dement Geriatr Cogn Disord. 2013;36(5-6):310–318.
15.
MiyashitaMNaritaYSakamotoA, et al.Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. J Neurol Sci. 2009;276(1-2):148–152.
16.
UttlBSantacruzPLitvanI, et al.Caregiving in progressive supranuclear palsy. Neurology. 1998;51(5):1303–1309.
17.
RosqvistKHagellPIwarssonSNilssonMHOdinP. Satisfaction with care in late stage Parkinson’s disease. Parkinsons Dis. 2019;10:2593547.
18.
Balzer-GeldsetzerMFerreiraJOdinP, et al.Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurol. 2018;18(1):185.
19.
HughesAJDanielSEKilfordLLeesAJ. Accuracy of clinical diagnosis of idiopathic Parkinson’s disease: a clinico-pathological study of 100 cases. J Neurol Neurosurg Psychiatry. 1992;55(3):181–184.
20.
ZaritSHReeverKEBach-PetersonJ. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655.
21.
FahnSERaMotuDC. Recent developments in Parkinson’s disease. In: FahnSMarsdenCDCalneDBGoldsteinM, eds. Macmillan Health Care Information. Vol 2; 1987:153–163, 293–304.
22.
HoehnMMYahrMD. Parkinsonism: onset, progression and mortality. Neurology. 1967;17(5):427–442.
23.
SchwabRSEnglandACSchwabZJEnglandASchwabR. Projection technique for evaluating surgery in Parkinson’s disease. In GillinghamFJDonaldsonMC, eds. Symposium on Parkinson’s Disease. 3rd ed. Livingstone; 1969:152–157.
24.
FolsteinMFFolsteinSEMcHughPR. “Mini-Mental State”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–198.
25.
ChaudhuriKRMartinez-MartinPBrownRG, et al.The metric properties of a novel non-motor symptoms scale for Parkinson’s disease: results from an international pilot study. Mov Disord. 2007;22(13):1901–1911.
26.
CummingsJLMegaMGrayKRosenberg-ThompsonSCarusiDAGornbeinJ. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44(12):2308–2314.
27.
CharlsonMEPompeiPAlesKLMacKenzieCR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40(5):373–383.
28.
EuroQol. EuroQol—a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208.
29.
CarterJHStewartBJArchboldPG, et al.Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Parkinson’s Study Group. Mov Disord. 1998;13(1):20–28.
30.
Martinez-MartinPForjazMJFrades-PayoB, et al.Caregiver burden in Parkinson’s disease. Mov Disord. 2007;22(7):924–931;quiz 1060.
31.
RazaliRAhmadFRahmanFNMidinMSidiH. Burden of care among caregivers of patients with Parkinson disease: a cross-sectional study. Clin Neurol Neurosurg. 2011;113(8):639–643.
32.
Rodriguez-GonzalezAMRodriguez-MiguezE. A meta-analysis of the association between caregiver burden and the dependent’s illness. J Women Aging. 2020;32(2):220–235.
33.
IgarashiAFukudaATengLMaFFDoreyJOnishiY. Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. J Mark Access Health Policy. 2020;8(1):1720068.
34.
HandAOatesLLGrayWKWalkerRW. The role and profile of the informal carer in meeting the needs of people with advancing Parkinson’s disease. Aging Ment Health. 2019;23(3):337–344.
35.
HandAOatesLLGrayWKWalkerRW. Understanding the care needs and profile of people living at home with moderate to advanced stage Parkinson disease. J Geriatr Psychiatry Neurol. 2018;31(5):237–247.
36.
EdebalkPG. Ways of Funding and Organising Elderly Care in Sweden. Population Ageing—A Threat to the Welfare State?Springer-Verlag; 2010:65–80.
37.
SmitsCHvan den BeldHKAartsenMJSchrootsJJF. Aging in the Netherlands: state of the art and science. Gerontologist. 2014;54(3):335–343.
38.
HappeSBergerK. The association between caregiver burden and sleep disturbances in partners of patients with Parkinson’s disease. Age Ageing. 2002;31(5):349–354.
39.
PalPKThennarasuKFlemingJSchulzerMBrownTCalneSM. Nocturnal sleep disturbances and daytime dysfunction in patients with Parkinson’s disease and in their caregivers. Parkinsonism Relat Disord. 2004;10(3):157–168.
40.
SchragAHovrisAMorleyDQuinnNJahanshahiM. Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord. 2006;12(1):35–41.
41.
HisemanJPFackrellR. Caregiver burden and the nonmotor symptoms of Parkinson’s disease. Int Rev Neurobiol. 2017;133:479–497.
42.
WilliamsonCSimpsonJMurrayCD. Caregivers’ experiences of caring for a husband with Parkinson’s disease and psychotic symptoms. Soc Sci Med. 2008;67(4):583–589.
43.
MacchiZAKoljackCEMiyasakiJM, et al.Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach. Ann Palliat Med. 2020;9(suppl 1):S24–S33.
44.
Caap-AhlgrenMDehlinO. Factors of importance to the caregiver burden experienced by family caregivers of Parkinson’s disease patients. Aging Clin Exp Res. 2002;14(5):371–377.
45.
Martinez-MartinPArroyoSRojo-AbuinJM, et al.Burden, perceived health status, and mood among caregivers of Parkinson’s disease patients. Mov Disord. 2008;23(12):1673–1680.
46.
ZhongMPeppardRVelakoulisDEvansAH. The relationship between specific cognitive defects and burden of care in Parkinson’s disease. Int Psychogeriatr. 2016;28(2):275–281.
47.
MiyashitaMNaritaYSakamotoA, et al.Health-related quality of life among community-dwelling patients with intractable neurological diseases and their caregivers in Japan. Psychiatry Clin Neurosci. 2011;65(1):30–38.
48.
McLaughlinDHassonFKernohanWG, et al.Living and coping with Parkinson’s disease: perceptions of informal carers. Palliat Med. 2011;25(2):177–182.
49.
PinquartMSorensenS. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62(2):P126–137.
50.
AarslandDLarsenJPKarlsenKLimNGTandbergE. Mental symptoms in Parkinson’s disease are important contributors to caregiver distress. Int J Geriatr Psychiatry. 1999;14(10):866–874.
51.
CarterJHStewartBJLyonsKSArchboldPG. Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression?Mov Disord. 2008;23(9):1211–1216.
52.
ShinHLeeJYYounJKimJSChoJW. Factors contributing to spousal and offspring caregiver burden in Parkinson’s disease. Eur Neurol. 2012;67(5):292–296.
53.
D’AmelioMTerrusoVPalmeriB, et al.Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurol Sci. 2009;30(2):171–174.
54.
AarslandDBronnickKEhrtU, et al.Neuropsychiatric symptoms in patients with Parkinson’s disease and dementia: frequency, profile and associated care giver stress. J Neurol Neurosurg Psychiatry. 2007;78(1):36–42.
55.
LauK-MA, A. Correlates of informal caregiver distress in Parkinson’s disease: a meta-analysis. Clin Gerontologist. 2011;34(2):117–131.
56.
BrunoVManciniDGhocheRArshinoffRMiyasakiJM. High prevalence of physical and sexual aggression to caregivers in advanced Parkinson’s disease. Experience in the palliative care program. Parkinsonism Relat Disord. 2016;24:141–142.
57.
EmreMAarslandDBrownR, et al.Clinical diagnostic criteria for dementia associated with Parkinson’s disease. Mov Disord. 2007;22(12):1689–1707; quiz 1837.
LeroiIMcDonaldKPantulaHHarbishettarV. Cognitive impairment in Parkinson disease: impact on quality of life, disability, and caregiver burden. J Geriatr Psychiatry Neurol. 2012;25(4):208–214.
60.
ThommessenBAarslandDBraekhusAOksengaardAREngedalKLaakeK. The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson’s disease. Int J Geriatr Psychiatry. 2002;17(1):78–84.
61.
MenzaMDobkinRDMarinHBienfaitK. Sleep disturbances in Parkinson’s disease. Mov Disord. 2010;25(suppl 1):S117–122.
62.
BartolomeiLPastoreAMeligranaL, et al.Relevance of sleep quality on caregiver burden in Parkinson’s disease. Neurol Sci. 2018;39(5):835–839.
63.
AarslandDKrambergerMG. Neuropsychiatric symptoms in Parkinson’s disease. J Parkinsons Dis. 2015;5(3):659–667.
64.
AbendrothMLutzBJYoungME. Family caregivers’ decision process to institutionalize persons with Parkinson’s disease: a grounded theory study. Int J Nurs Stud. 2012;49(4):445–454.
65.
McLennonSMHabermannBDavisLL. Deciding to institutionalize: why do family members cease caregiving at home?J Neurosci Nurs. 2010;42(2):95–103.
66.
PetersMFitzpatrickRDollHPlayfordDJenkinsonC. Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life?Parkinsonism Relat Disord. 2011;17(5):348–352.
67.
GoldsworthyBKnowlesS. Caregiving for Parkinson’s disease patients: an exploration of a stress-appraisal model for quality of life and burden. J Gerontol B Psychol Sci Soc Sci. 2008;63(6):P372–376.
68.
LyonsKSStewartBJArchboldPGCarterJH. Optimism, pessimism, mutuality, and gender: predicting 10-year role strain in Parkinson’s disease spouses. Gerontologist. 2009;49(3):378–387.
69.
ZhongMEvansAPeppardRVelakoulisD. Validity and reliability of the PDCB: a tool for the assessment of caregiver burden in Parkinson’s disease. Int Psychogeriatr. 2013;25(9):1437–1441.
70.
KlietzMRippenaLLangeF, et al.Validating the Parkinson’s disease caregiver burden questionnaire (PDCB) in German caregivers of advanced Parkinson’s disease patients. Int Psychogeriatr. 2019;31(12):1791–1800.
71.
PillasMSelaiCQuinnNP, et al.Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers). Qual Life Res. 2016;25(1):81–88.
72.
SeppiKRay ChaudhuriKCoelhoM, et al.Update on treatments for nonmotor symptoms of Parkinson’s disease-an evidence-based medicine review. Mov Disord. 2019;34(2):180–198.
73.
SeckerDLBrownRG. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: a preliminary randomised controlled trial. J Neurol Neurosurg Psychiatry. 2005;76(4):491–497.
74.
Oliva-MorenoJTrapero-BertranMPena-LongobardoLMPozo-RubioRD. The valuation of informal care in cost-of-illness studies: a systematic review. PharmacoEconomics. 2017;35(3):331–345.
75.
TitovaNChaudhuriKR. Non-motor Parkinson disease: new concepts and personalised management. Med J Aust. 2018;208(9):404–409.
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