Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial

Ina Zwingmann, Adina Dreier-Wolfgramm, Alexander Esser, Diana Wucherer, Jochen René Thyrian, Tilly Eichler, Anika Kaczynski, Jessica Monsees, Armin Keller, Johannes Hertel, Ingo Kilimann, Stefan Teipel, Bernhard Michalowsky, Wolfgang Hoffmann, Ina Zwingmann, Adina Dreier-Wolfgramm, Alexander Esser, Diana Wucherer, Jochen René Thyrian, Tilly Eichler, Anika Kaczynski, Jessica Monsees, Armin Keller, Johannes Hertel, Ingo Kilimann, Stefan Teipel, Bernhard Michalowsky, Wolfgang Hoffmann

Abstract

Background: Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection.

Methods: Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data.

Results: In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers.

Conclusions: Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services.

Trial registration: ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

Keywords: Caregiver burden; Caregiver interventions; Caregiver support; Caregiver supporting groups; Randomized controlled trial.

Conflict of interest statement

The authors state that there are no conflicts of interest.

Figures

Fig. 1
Fig. 1
The adapted and extended Health Behavioral Model for family dementia caregivers in the present study (based on [13, 14])

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