When Home Care Ends--changes in the Physical Health of Informal Caregivers Caring for Dementia Patients: a Longitudinal Study

Objectives: To verify the change in health variables and parameters of health service utilization in a group of active caregivers for older persons with dementia in comparison with former caregivers who had ceased to provide home care for at least 6 months (death of the patient or institutionalized care).

Design: A prospective longitudinal study with 1-year follow-up. Active and former caregiver groups originated from a sample of active caregivers at baseline.

Setting: Participants were recruited mainly via advertisements placed in two magazines with large, nationwide circulation. The questionnaires were sent on request.

Participants: Seven hundred twenty primary caregivers of dementia patients living in the community. All patients had a medical diagnosis of dementia and had a score of 20 or greater on the mental-mnestic disturbances factor of the Sandoz Clinical Assessment--Geriatric scale. Their care needs covered at least one of four activities of daily living (personal hygiene, eating, toilet use/excretion, mobility). After 12 months, 681 caregivers were reinterviewed.

Measurements: The physical complaints were assessed with the 24-item Giessen Symptom List (subscales: aching limbs, stomach complaints, heart complaints, physical exhaustion). Other key variables were the number of illnesses, number of somatic and psychotropic medications, and number of physician visits.

Results: Although the somatic symptoms of the active caregivers (n = 427) remained stable at a high level, they decreased significantly (24%) in the group of former caregivers (n = 121). Simultaneously, the number of visits former caregivers made to physicians almost doubled. The reason why home care was terminated (death or institutionalization) did not influence health variables or health service utilization.

Conclusion: The physical health of former caregivers improves in the long term once they cease to provide home care. The fact that former caregivers go to the doctor much more frequently is to be interpreted as an indication that they take the time to attend to their own physical and medical needs.