Abstract
Background
There is a lack of data describing caregiver burden in primary care where most (informal) caregiving is provided.
Objective
The aims of the paper are to describe the burden of people caring for persons with dementia (PWD) in primary care in multiple dimensions and to analyze factors associated with specific dimensions of caregiver burden.
Material and methods
Analyses are based on cross-sectional data of the general physician-based, cluster-randomized, controlled intervention trial DelpHi-MV (Dementia: life and person-centered help). A sample of n = 310 community dwelling PWD screened positive for dementia (DemTect < 9) and their caregivers provided sociodemographic and disease-related data, caregiver burden was assessed in 20 dimensions using the Berlin inventory on relatives’ burden in dementia (Berliner Inventar zur Angehörigenbelastung – Demenz, BIZA-D).
Results
Depending on the dimension of objective burden due to caring, between 71.3 % and 92.3 % of the caregivers reported an objective burden. The average burden ranged from 3.68 to 9.81 (scale range 0–16). The subjective burden due to caring ranged from 0.1 to 1.1 (scale range 0–4). Between 22.6 and 51.6 % of our sample indicated burdens due to perceived conflicts. Logistic regression models associating caregiver burden with specifics of PWD and caregivers reached statistical significance for nearly all dimensions of the BIZA-D. Functional and cognitive impairment were statistically significant factors in 12 out of 20 and 5 out of 20 dimensions, respectively.
Conclusion
This is first quantitative in-depth analysis of burden for caregiver of people screened positive for dementia in primary care in Germany. In general, caregiver burden was perceived as being low to moderate by caregivers and lower than reported from other settings.
Zusammenfassung
Hintergrund
Ein Großteil der an Demenz erkrankten Menschen lebt in der eigenen Häuslichkeit. In der ambulanten Versorgung der Betroffenen spielen die Angehörigen eine wichtige Rolle. Über die Belastung der Angehörigen in diesem Setting ist jedoch nur wenig bekannt.
Ziel
Ziele dieses Beitrags sind die mehrdimensionale Beschreibung der Belastung von Angehörigen von Menschen mit Demenz (MmD) in der Häuslichkeit und die Analyse mit der Angehörigenbelastung assoziierter Faktoren der MmD.
Methode
Diese Analyse basiert auf querschnittlichen Daten der hausarztbasierten, cluster-randomisierten kontrollierten Interventionsstudie DelpHi-MV (Demenz: lebenswelt- und personenzentrierte Hilfen in Mecklenburg-Vorpommern). Eine Stichprobe von n = 310 in der Häuslichkeit lebender, positiv auf Demenz gescreenter Menschen (DemTects < 9) und deren Angehörigen wurden bezüglich Soziodemographie, krankheitsbezogener Daten und der Angehörigenbelastung untersucht. Die Angehörigenbelastung wurde in 20 Dimensionen durch das „Berliner Inventar zur Angehörigenbelastung – Demenz“ (BIZA-D) gemessen.
Ergebnisse
In Abhängigkeit von der untersuchten Dimension gaben zwischen 71,3 und 92,3 % der Angehörigen eine objektive Belastung an. Diese wurde im Durchschnitt, je nach Dimension, mit 3,68–9,81 auf einer Skala von 0–16 bewertet. Die subjektive Belastung variierte von 0,1 bis 1,1 auf einer Skala von 0–4. Zwischen 22,6 und 51,6 % unserer Stichprobe gaben eine Belastung aufgrund subjektiv wahrgenommener Bedürfniskonflikte an. Logistische Regressionsmodelle zur Analyse von mit Angehörigenbelastung assoziierten Faktoren der MmD waren statistisch signifikant für nahezu alle Dimensionen des BIZA-D. Funktionale Einschränkungen (ADL) und kognitive Einschränkungen waren dabei signifikant mit Belastung assoziierte Faktoren in 13 von 20 bzw. 5/20 Dimensionen.
Schlussfolgerung
Dies ist die erste quantitative tiefergehende Analyse der Angehörigenbelastung in der Häuslichkeit lebender Menschen mit Demenz in Deutschland. Im Vergleich mit anderen Studien und Settings wurde die Angehörigenbelastung geringer und als eher leicht bis mittel eingeschätzt.
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Acknowledgements
The assessment of data was conducted as part of the DelpHi-Trial. We thank the experienced field study team and research group (in alphabetical order): Kerstin Albuerne, Aniela Angelow, Grit Assmann, Vaska Böhmann, Georgia Böwing, Kathleen Dittmer, Thomas Fiss, Sarah Gardzella, Jana Hubert, Ulrike Kempe, Viktoriya Kim, Saskia Moll, Andrea Pooch, Steffen Richter, Christiane Schnick and Christine Winckler.
Funding
There was no funding received for the analyses reported in this manuscript. The DelpHi-MV study was funded by the German Center for Neurodegenerative Diseases (DZNE) and the University Medicine of Greifswald (no grant number, clinical Trials gov. Identifier: NCT01401582).
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J. R. Thyrian, P. Winter, T. Eichler, M. Reimann, D. Wucherer, A. Dreier, B. Michalowsky, K. Zarm and W. Hoffmann state that they have no conflict of interests.
The accompanying manuscript does not include studies on animals. Informed consent was obtained from all participants in the study. In the case of participants being unable to give informed consent, this was obtained from the legal representative.
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J. R. Thyrian designed the study, formulated the research questions, supervised the analysis and drafted the paper; P. Winter assisted with formulating the research questions, analyzing the data and writing the article; T. Eichler supported the data assessment and contributed to the writing of the manuscript; M. Reimann conducted the statistical analysis and assisted in writing the article; D. Wucherer supported the data assessment and the writing of the article; A. Dreier assisted in designing the study and writing the manuscript; B. Michalowsky helped conduct the study and assisted with writing the manuscript; K. Zarm gave critical thematic input and supported the writing of the article; W. Hoffmann supervised the design of the study, the data assessment and the analysis and supported the writing of the article.
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Table 4 Summary of logistic regression models for each of the different dimensions of caregiver burden based on specifics of persons with dementia cared for (random effects for GP included)
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Thyrian, J.R., Winter, P., Eichler, T. et al. Relatives’ burden of caring for people screened positive for dementia in primary care. Z Gerontol Geriat 50, 4–13 (2017). https://doi.org/10.1007/s00391-016-1119-9
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DOI: https://doi.org/10.1007/s00391-016-1119-9