Caregiver coping in dementing illness--implications for short-term respite care

The increasing cost of caring for older people with dementia is just one of two key justifications for researching service interventions designed to help sustain dementia sufferers within their own home. Secondly, studies consistently highlight an almost universal determination by spouse caregivers to avoid institutionalisation by coping to the 'bitter end' or at least until their coping resources have been irrevocably depleted (Knight et al, 1993; Barnes et al, 1981; Upton, 2001). The experience of coping with a dementing spouse is known to be enduring, stressful and pathogenic to the caregiver (Schwarz and Blixen, 1997; Rosenheimer and Francis, 1992). Many carers describe short periods of personal private time and space away from the psycho-physiological demands of caregiving as therapeutic coping facilitators. The term 'respite care' (essentially a professional colloquialism) is a multi-agency response to the needs of such carers and typically refers to a range of interventions from befriending/sitting services; day-care services; to short-term residential/in-patient care. This paper, taken from a PhD study into the day-to-day coping experience of forty-six spouse carers (Upton, 2001), explores the issue of coping and its respite implications for day and short-term residential/in-patient care. The high status of the respite concept as coping enhancer is highlighted along with the dangers of using an intervention, which can paradoxically accelerate expensive, unwanted and primarily unnecessary long-term care placement.