Method: The study is part of the Swedish contribution to a collaborative study financed by the European Commission on caregiving for elderly with dementia. Community living caregivers (urban and rural) comprised the study population (N=92). Study participants were interviewed by telephone regarding the quantities of formal and informal care provided to the individual with dementia over a four-week period. Formal care was defined as social services such as support from home aides, meals-on-wheels, transport, district nurses or help with cleaning, laundry or shopping. Informal care services were separated into three components: 1) support with activities of daily living (ADL) (e.g. dressing, eating); 2) support with instrumental activities of daily living (IADL) (e.g. meal preparation); and 3) supervision/surveillance.

Findings: Individuals with dementia received 55 hours per month of formal care services on average, compared to 299 hours of informal care. Analyses indicated that the different components of informal care were dependent on distinct caregiver and patient-related variables. The most important variables explaining ADL support were the patient's severity of dementia and the caregiver's age, wish to care, and remuneration. Regarding IADL support, the most important factor was the caregiver's coping ability, whereas the most important factor in the amount of supervision provided was the patients' behaviour status. Overall, the amount of total informal support depended on the patients' age, behaviour, and amount of formal care received.

Conclusion: Informal care can be conceptualized in three distinct components: ADL, IADL, and supervision. Quantity of informal care provided to home-dwelling demented elderly was far more extensive compared to formal care services, especially for those with moderate dementia. Different aspects of informal support were influenced by distinct patient and caregiver characteristics, indicating that informal caregiving was both individual and temporal by nature. Support programs should strive to target specific caregiver burdens that will vary with distinct patient behaviours and convey caregiving skills and techniques within a framework of elaborated provision of respite and relief services.

Reference: Wimo A, von Strauss E, Nordberg G, Sassi F, Johansson L. Time spent on informal and formal care giving for persons with dementia in Sweden. Health Policy 2002; 61, Dec: 255-268.

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