Relatives' burden of caring for people screened positive for dementia in primary care Results of the DelpHi study

There is a lack of data describing caregiver burden in primary care where most (informal) caregiving is provided. 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. 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 Angehorigenbelastung - Demenz, BIZA-D). 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. 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.