Longitudinal predictors of informal and formal caregiving time in community-dwelling dementia patients.
OBJECTIVE
Care provided in the community for dementia patients on an individual basis may be very time consuming. Yet, little is known about the factors affecting caregiving time for community-dwelling dementia patients. Thus, we aimed to investigate the predictors of informal and formal caregiving time for these patients in a longitudinal approach.


METHODS
Caregiving time for n = 126 community-dwelling dementia patients was assessed by proxy interviews in four assessments at 6-month intervals (1.5 years of longitudinal follow-up; AgeCoDe study). Measurement of informal caregiving time was based on a German adaptation of the Resource Utilization in Dementia questionnaire. Dementia severity was measured by the Clinical Dementia Rating (CDR). We used random effects models to estimate the effects of sociodemographic variables (age, gender, marital status and education), comorbidity and dementia severity on informal and formal caregiving time.


RESULTS
At the first assessment, mean age was 85.0 years (±3.2 years). The majority of patients was female (65.9 %), not married (divorced, single, widowed: 55.6 %) and had primary education (63.5 %). Furthermore, mean GDS was 4.4 (±0.8) and mean MMSE was 20.1 (±5.1). According to CDR, 43 individuals had very mild dementia, 55 individuals had mild dementia and 28 individuals had moderate/severe dementia. Moreover, mean total caregiving time was 3.4 h per day (±4.0). Thereof the main part represents informal caregiving time (2.3 h ± 3.4), whereas formal caregiving time was 1.2 h (±2.4). Dementia severity was associated with total caregiving time, mainly influenced by informal caregiving time. Age was positively associated with total caregiving time, driven by formal caregiving time, while being married was positively associated with total caregiving time, mainly affected by informal caregiving time. All need categories of informal caregiving time were strongly related to dementia severity, whereas none of the categories of formal caregiving time were related to dementia severity.


CONCLUSIONS
Our findings extend previous studies that found an association between informal caregiving time and dementia severity. Moreover, our findings highlight the role of informal care for community-dwelling dementia patients in Germany. Informal caregiving time strongly increases with dementia severity. Consequently, as the number of patients suffering from dementia is expected to increase considerably in the next decades, there is a paramount need to strengthen the informal care system to meet patients' needs.
Department of Health Economics and Health Services Research, Hamburg Center for Health Economics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. a.hajek@uke.de.
André
A
Hajek
Department of Health Economics and Health Services Research, Hamburg Center for Health Economics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Christian
C
Brettschneider
Department of Primary Medical Care, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Annette
A
Ernst
Department of Primary Medical Care, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Tina
T
Posselt
Institute of General Practice, Hannover Medical School, Hannover, Germany.
Birgitt
B
Wiese
Institute of General Practice, Hannover Medical School, Hannover, Germany.
Jana
J
Prokein
Central Institute of Mental Health, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
Siegfried
S
Weyerer
Central Institute of Mental Health, Medical Faculty Mannheim, Heidelberg University, Mannheim, Germany.
Jochen
J
Werle
Institute of General Practice, Medical Faculty, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany.
Angela
A
Fuchs
Institute of General Practice, Medical Faculty, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany.
Michael
M
Pentzek
Institute of Social Medicine, Occupational Health and Public Health, University of Leipzig, Leipzig, Germany.
Janine
J
Stein
Institute of Social Medicine, Occupational Health and Public Health, University of Leipzig, Leipzig, Germany.
Steffi G
SG
Riedel-Heller
Department of Psychiatry, Technical University of Munich, Munich, Germany.
Horst
H
Bickel
Department of Psychiatry, Technical University of Munich, Munich, Germany.
Edelgard
E
Mösch
Department of Psychiatry, University of Bonn, Bonn, Germany.
Kathrin
K
Heser
Department of Psychiatry and Psychotherapy, University of Cologne, Cologne, Germany.|German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany.
Frank
F
Jessen
Department of Psychiatry, University of Bonn, Bonn, Germany.|German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany.
Wolfgang
W
Maier
Department of Primary Medical Care, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Martin
M
Scherer
Department of Health Economics and Health Services Research, Hamburg Center for Health Economics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Hans-Helmut
HH
König
D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000706:statistics & numerical data*; D015897:Comorbidity; D003704:Dementia / Q000453:epidemiology / Q000628:therapy*; D005260:Female; D005858:Germany; D006801:Humans; D057187:Independent Living; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D012720:Severity of Illness Index; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D013997:Time Factors
Dementia; Formal caregiving time; Informal caregiving time; Longitudinal study