Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons: results from a 3-year follow-up population-based study.

OBJECTIVE: Elderly care includes complex interactions between formal services, informal care, morbidity and disabilities. Studies of the incremental effects of formal and informal care are rare and thus the objective was to describe the longitudinal patterns in formal and informal care given to non-demented and demented persons living in a rural area in Sweden.
METHODS: Transitions in the Kungsholmen-Nordanstig Project (n=919) was followed up 3 years later (n=579), presented as different combinations of informal and formal care, institutionalization and mortality. Number of hours spent on care was examined by the Resource Utilization in Dementia instrument (RUD). Bootstrapped descriptive statistics and regression models were applied.
RESULTS: The overall mortality during follow-up was 34%, and 15% had been institutionalized. Of those who lived at home, those receiving only formal care had been institutionalized to the greatest extent (29%; p<0.05). In terms of hours, informal care decreased amongst demented. The ratio between demented and non-demented was greater at baseline, both regarding informal care (10:1 and 3:1, respectively) and formal care (5:1 and 4:1, respectively). People with mild cognitive decline and no home support at baseline had a great risk of being receiver of care (formal or informal) or dead at follow-up.
CONCLUSIONS: The amount of informal care was lower for demented persons still living at home at follow-up than at baseline, probably due to selection effects (institutionalization and mortality). Mild cognitive decline of non-users of care at baseline was strongly associated with receiving care or being dead at follow-up.