Informal caregivers' hopes and expectations of a referral to a memory clinic.

ABSTRACT

Although only 20-50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent 'need to know' among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of 'naming it,' 'accessing treatment,' 'knowing what to expect,' and 'receiving guidance.' When asked six months later about the impact of the diagnosis, the main theme was 'acceptance and moving forward.' Caregivers reported that the diagnosis provided 'relief,' 'validation,' and 'improved access to services.' These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses.