Forty-six studies were included in the review. These included 1,866 participants with a mean number of 41 participants per study. Seven studies involved people with dementia, 25 involved carers and 14 involved both. The mean score on the Consolidated Criteria for Reporting Qualitative Research (COREQ) assessment was 15 (range 3 to 25) out of 32 items. Strengths reported by most studies were consistent data and findings, clarity of major themes, participant quotations, sampling methods, methods of approach and sample size. Common weaknesses were reporting of interviewer characteristics and participant knowledge of, or prior relationship with, the interviewer.
Five major themes were identified: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; communication and attitudes.
Seeking a diagnosis: The importance of timeliness in receiving a diagnosis was emphasised; earlier diagnoses led to easier subsequent transitions. Reactions to diagnosis ranged from shock to relief and were related to whether dementia had been suspected.
Accessing support and services: The importance of support or services being in line with current needs was emphasised. People often felt that it took too long to find assistance. Participants perceived a lack of knowledge about available services by primary care providers which led to difficulty obtaining help. There were delays in accessing specialist services such as memory clinics but the services were regarded positively.
Addressing information needs: The experience of having to "push" to obtain information was reported. Clarity of information and written communication were valued but it was important that the quantity of information should not be overwhelming.
Disease management: The level of knowledge about dementia by healthcare providers significantly impacted on the perceived effectiveness of disease management. Many caregivers reported needing to initiate the process of aspects of disease management.
Communication and attitudes: Both people with dementia and their caregivers felt it was imported that their perspectives were valued. Sensitivity and validation of feelings, together with being treated with respect and dignity, were appreciated. Poor communication and/or attitudes could be barriers to treatment, whereas when these were good it put patients at ease and facilitated interactions.