Barriers to community support for the dementia carer: a qualitative study

OBJECTIVES: To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers. DESIGN: Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention. SETTING: Australian metropolitan Aged Care Assessment Team. SUBJECTS: 24 live-in carers of dementia sufferers. MAIN OUTCOME MEASURES: Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies. RESULTS: Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure. CONCLUSIONS: Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers.