Identifying Unmet Needs of Family Dementia Caregivers: Results of the Baseline Assessment of a Cluster-Randomized Controlled Intervention Trial

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

Abstract

Background: Caregivers providing informal care for people with dementia (PwD) often report unmet needs, burden, and health impairments. Optimal support for family dementia caregivers will likely benefit from better understanding and assessment of the prevalence and types of caregivers' unmet needs and associated socio-demographic and clinical characteristics.

Objective: The present study investigates 1) the number and types of caregivers' unmet needs, 2) socio-demographic and clinical characteristics of both PwD and caregivers, and 3) caregivers' burden and health-related outcomes that are related to caregivers' unmet needs.

Methods: The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive standardized, computer-based caregivers' needs assessment within a general practitioner (GP)-based, cluster-randomized intervention trial.

Results: A total of n = 505 unmet needs were identified for n = 171 caregivers from the intervention group at baseline. Only 24.3% caregivers reported no unmet need (n = 55), whereas 75.7% caregivers had at least one unmet need (n = 171). Caregivers had on average 2.19 unmet needs (mean = 2.19, SD = 2.15). Specifically, 53.1% of caregivers had one up to three unmet needs (n = 120), 18.6% (n = 42) had three up to six unmet needs, and 4.0% (n = 9) had more than six unmet needs.

Discussion: Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support.

Trial registration: ClinicalTrials.gov NCT01401582.

Keywords: Caregiver burden; caregiver interventions; caregiver supporting groups; caregiver unmet needs; randomized controlled trial.

Figures

Fig.1
Fig.1
Histogram of the dependent variable.

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