In:
Alzheimer's & Dementia, Wiley, Vol. 16, No. S7 ( 2020-12)
Abstract:
About half of the care for dementia is provided informally by family carers. Evidence on the hours of informal care by dementia symptoms of cognition, function and behavior is important to estimate the long‐term health‐economic effects beyond the common trial periods; especially as such evidence is not available from claims registries. We aim to estimate the informal care time provided by family carers to persons with dementia across states of cognition, function and behavior and demographic characteristics using merged data from multiple countries. Method Data was obtained from longitudinal cohorts Actifcare, ICTUS, IDA, LEARN, 4C, MEDICIE, PLASA and RightTimePlaceCare, including persons with Alzheimer’s and other type dementia recruited from a variety of clinical settings in countries BE, CH, DE, DK, EE, ES, FI, FR, GR, IE, IT, NL, NO, PT, SE and UK. Scores on cognition (MMSE), harmonized instrumental activities of daily living (IADLS, DAD) and neuropsychiatric symptoms (NPI) were categorized as mild, moderate or severe, resulting in 27 possible health states. Missing data were imputed using multiple imputation. Multivariate mixed regression models were fitted to the reported instrumental and personal informal care (obtained by the Resource Use in Dementia questionnaire) using the health states and demographic characteristics. Result A total of 10,310 observations from 4866 persons were available with mean baseline person with dementia age of 79 (SD=7.4) and 64% female, and mean informal carer age of 63 (SD=13.8), 66% female and 63% living together with the person with dementia. The mean hours of informal care per week are provided in figure 1. Regression indicated a positive association with cognition, function, behavior, home living, female and cohabiting informal carer (for both instrumental and personal informal care), and age had varying effects. Conclusion Informal care is associated to dementia disease severity across cognitive, functional and behavioral domains independently. The results can serve as input for country‐specific models for epidemiological projections and health‐economic simulation for the evaluation of (new) interventions from a societal perspective. The harmonized longitudinal dataset has the potential to estimate within‐individual changes in informal care related to disease progression over time.
Type of Medium:
Online Resource
ISSN:
1552-5260
,
1552-5279
Language:
English
Publisher:
Wiley
Publication Date:
2020
detail.hit.zdb_id:
2201940-6
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