Abstract
Introduction: Timely post-diagnostic support is necessary to help people with dementia and those who provide care adapt to the diagnosis and optimise independence and quality of life. However, evidence from people with dementia and carers regarding the support they need is scarce. Aim: To explore the perspectives of people with dementia and their carers regarding the support they had been offered, barriers and facilitators to accessing such support, and support they viewed as desirable or ideal. Method: This was a cross-sectional qualitative exploratory study. Data were collected from individual interviews with 13 people recently diagnosed with dementia at nine Australian memory clinics and 17 carers. Interviews were conducted between September 2021 and October 2022. Reflexive thematic analysis was used to examine participants' comments under four topics: Current Care and Support, Barriers, Facilitators, and Desirable Care and Support. Results: Current Care and Support: Four themes emerged: Communication with empathy; Written information valuable but could be overwhelming; Referrals provided but not necessarily followed; A focus on prescribed anti-dementia medications. Under the topic of Barriers, three themes were derived: Dementia stigma restricts life after diagnosis; Disapointment in Health and Aged Care systems; Limited insight into and/or difficulty expressing own needs. Under the topic of Facilitators, comments focused on Support from family and friends is crucial. Under the topic of Desirable Care and Support, three themes emerged: A single person guiding ongoing post-diagnostic support; Support with driving concerns; Engaging and tailored information. Conclusion: Perspectives of people recently diagnosed with dementia and their carers identified the need to ensure that post-diagnostic support addressed their individual needs, was clear, ongoing and involved the support of family and friends to reduce barriers and facilitate access. The importance of guidance by a trusted professional support person was considered key in facilitating more effective post-diagnostic dementia care.