Caregiving and Caregiver Burden in Dementia Home Care: Results from the Prospective Dementia Registry (PRODEM) of the Austrian Alzheimer Society

Article type: Research Article

Authors: Ransmayr, Gerhard^{a; *} | Hermann, Philipp^b | Sallinger, Katharina^b | Benke, Thomas^c | Seiler, Stephan^d | Dal-Bianco, Peter^e | Marksteiner, Josef^f | Defrancesco, Michaela^g | Sanin, Günter^c | Struhal, Walter^a | Guger, Michael^a | Vosko, Milan^a | Hagenauer, Karin^h | Lehner, Riccarda^a | Futschik, Andreas^b | Schmidt, Reinhold^d

Affiliations: [a] Department of Neurology 2, Med Campus III, Kepler University Hospital, Faculty of Medicine, Johannes Kepler University Linz, Austria | [b] Department of Applied Statistics, Johannes Kepler University Linz, Austria | [c] Department of Neurology, Medical University Innsbruck, Austria | [d] Department of Neurology, Section of Neurogeriatrics, Medical University Graz, Austria | [e] Department of Neurology, Medical University Vienna, Austria | [f] Department of Psychiatry and Psychotherapy, Regional Hospital Hall, Austria | [g] Department of Psychiatry and Psychotherapy, Medical University Innsbruck, Austria | [h] Department for Clinical and Health Psychology, Med Campus III, Kepler University Hospital, Linz, Austria

Correspondence: [*] Correspondence to: Dr. Gerhard Ransmayr, Department of Neurology 2, Med Campus III, Kepler University Hospital, Johannes Kepler University Linz, Krankenhausstr. 9, A-4020 Linz, Austria. Tel.: +43 5768083 6811; Fax: +43 5768083 6819; E-mail: [email protected].

Abstract: Background:Comprehensive studies on caregiver burden (CB) of persons caring for dementia patients differ methodologically and show variable results. Objective:Analysis of known and hypothesized factors of CB in home care of dementia patients. Methods:Multicenter longitudinal study comprising 585 persons caring mostly for Alzheimer’s disease patients (age median 77.25 years, Mini-Mental State Examination raw score median 23) using the Zarit Caregiver Burden Interview (CBI). Known patient-related determinants of CB were studied, such as dementia severity (Clinical Dementia Rating, CDR), neuropsychological deficits (CERAD-Plus), neuropsychiatric symptoms (Neuropsychiatric Inventory, NPI), disability (Disability Assessment for Dementia, DAD), dependency (Dependency Scale, DS), and moreover, unclarified potential factors (age, sex, education of patients; age, sex, occupational status of the caregivers; family relationship). Psychological and somatic effects of CB were analyzed (factor analysis). Results:Caregiver age was median 61. Female caregivers prevailed (67.8%). Median CBI sum score (CBIss) was 16 at baseline. After two years, CBIss was 22 and 37% of the caregivers reported mild to moderate (CBIss 21–40), 16.8% moderate to severe or severe (≥41), and 46.2% absent to little CB (CBIss ≤ 20). CB correlated positively with NPI, CDR, DS scores, disability (DAD), years of education of the patients, and proximity of patient and caregiver sex (female), and negatively with caregiver age. Caregivers reported restrictions of time, health problems, and negative emotions. Conclusion:The findings are applicable to identify persons at risk for substantial CB and its consequences. There is demand for personal, psychological, and medical support of caregivers and increasing male participation.

Keywords: Caregiver burden, dementia, dementia severity, dependency, home care, Zarit Caregiver Burden Interview, neuropsychiatric symptoms

DOI: 10.3233/JAD-170657

Journal: Journal of Alzheimer's Disease, vol. 63, no. 1, pp. 103-114, 2018