Understanding diagnostic settings and carer experiences for dementia diagnosis in Australia.

Background: Australian guidelines advocate referral to comprehensive memory services for dementia diagnosis, but many patients may be diagnosed elsewhere.

Aims: To determine common settings for dementia diagnosis in Australia and to compare patient and carer experience between settings.

Methods: Exploratory cross-sectional study of patients with dementia admitted to a Melbourne sub-acute hospital. Patients who had capacity to participate were included; carers were recruited for patients without capacity. Participants completed an interviewer-administered survey which asked them to recall the diagnostic setting, discussions about diagnosis and management (clinical care) and overall experience of diagnosis. Descriptive statistics were applied and open-ended questions were analysed using inductive and deductive coding approaches.

Results: From 81 eligible participants, 74 consented to participate (one patient, 74 carers). Participants reported dementia diagnosis occurred a median of 24 months before interview, in the following settings: hospitals (31.3%), private specialist clinics (29.7%), memory clinics (14.9%), general practice (13.5%), community health services (9.5%) and residential care (1.4%). Recall of discussions about dementia-modulating medications was higher in participants diagnosed in memory clinics and private specialist clinics (70%) compared to other settings (15%) (P < 0.001). Discussion about living circumstances was highest in hospitals (87% vs 40%) (P < 0.001). One third of participants reported dissatisfaction with their experience. Reported satisfaction was highest for memory clinics.

Conclusion: Results suggest majority of people with dementia are diagnosed outside memory services. Significant variability exists in experiences between services, with a high proportion of participants expressing dissatisfaction with their experience with dementia diagnosis. Strategies to standardise diagnosis of dementia, measure and improve quality of care across all settings are required.