Formal and informal care in an urban and a rural elderly population : who? when? what?

This thesis explored informal and formal care in relation to physical and mental functioning in an urban and a rural setting in Sweden. Three different study populations were used: eight cohabiting couples where one of the spouses was the primary caregiver for a partner with dementia; an urban and a rural elderly population (75+ years) participating in the Kungsholmen Project in central Stockholm; or the Kungsholmen-Nordanstig Project in the county of Hälsingland. Both projects are longitudinal, population-based studies on aging and dementia, using the same standardized protocols in both areas.

Study I. A qualitative approach, following spouses who were primary caregivers for a demented partner, was chosen to describe types and patterns of caring activities. The findings demonstrate the intricacy and multidimensionality of the caregiving situation, as well as the varied time-consuming caring activities and tasks performed by informal carers. Spouses found the caregiving role rewarding in terms of experiencing nearness and a feeling of togetherness.

Study II. In a rural elderly population, the amount of informal in-home care was much greater than formal in-home care, and also greater among demented than nondemented persons. We found an association between the severity of cognitive decline and the amount (hours per day) of informal care, while this pattern was weaker regarding formal care.

Study III. A study of all institutionalized elderly inhabitants in a rural community showed that having dementia increased the amount of total care time (hours per day). The presence of dementia added more than nine hours, while each loss of one ADL function added 2.9 hours. The estimated cost for institutional ADL-care increased with more than 85% for people being dependent in 5-6 ADL activities, compared to persons with no functional dependency, and with 30% for persons with dementia compared to the non-demented.

Study IV. We found geographical differences in two elderly populations living at home. The rural elderly residents were almost three times more likely to receive informal care. Living alone was strongly associated with receiving formal care in both areas, but it was the women with high education in the urban area who received more formal care. There were no area differences in physical functioning, whereas rural elderly were more cognitively impaired.

Summary. Elderly cohabiting caregivers were engaged in demanding timeconsuming care, from supervision to heavy physical responsibility. The amount of informal in-home care was much greater than in-home formal care. Our findings indicate that informal care substitutes rather than compliments formal care. There was a variation in time use of care in institutional settings due to differences in ADL dependency, but also whether dementia was present or not. These variations have implications for cost of institutional care. The rural elderly population received significantly more informal care, and was more cognitively impaired.

List of scientific papers

I. Jansson W, Nordberg G, Grafström M (2001). Patterns of elderly spousal caregiving in dementia care: an observational study. J Adv Nurs. 34(6): 804-12
https://pubmed.ncbi.nlm.nih.gov/11422551

II. Nordberg G, von Strauss E, Kåreholt I, Johansson L, Wimo A (2005). The amount of informal and formal care among non-demented and demented elderly persons-results from a Swedish population-based study. Int J Geriatr Psychiatry. 20(9): 862-71
https://pubmed.ncbi.nlm.nih.gov/16116583

III. Nordberg G, Wimo A, Jönsson L, Kåreholt I, Sjölund BM, Lagergren M, von Strauss E (2007). Time use and costs of institutionalised elderly persons with or without dementia: results from the Nordanstig cohort in the Kungsholmen Project--a population based study in Sweden. Int J Geriatr Psychiatry. 22(7): 639-48
https://pubmed.ncbi.nlm.nih.gov/17225239

IV. Nordberg G, Sjölund BM, Wimo A, von Strauss E (2007). Home care in relation to physical and mental functioning: comparison of an urban and rural elderly population. [Submitted]