Introduction: There is a lack of information about the experiences of people living with dementia and their carers, especially in rural and regional areas. Understanding these experiences helps to identify gaps and unmet needs within the health system and improve quality of care and outcomes for people living with dementia. The aim of this study was to improve our knowledge of dementia support needs. This included access to health and social care services and supports for people living with dementia and those who provide informal or formal support to someone living with dementia.
Methods: Interviews were conducted with 26 participants from the Gippsland region of Victoria, Australia with knowledge of dementia care. Purposive sampling engaged people with lived experience, carers/family members and health professionals delivering dementia care and social services. Discussions centred around participants’ experiences of support services, the diagnosis process and what they thought was needed to improve the services and supports offered. Thematic analysis of the data was undertaken using the framework method.
Results: The interview data indicated that the needs of many people living with dementia and their carers were not currently being met. The themes were: limited access to services and supports, including primary and specialist care, often impacted by lack of knowledge of care options, difficulty navigating the system and funding models as a barrier, leading to delays in getting a diagnosis and accessing specialist services; lack of holistic care to enable people living with dementia to ‘live well’; and stigma impacted by a lack of knowledge of dementia among professionals and in the community. Relationship centred care was described as a way to improve the lives of people living with dementia.
Conclusions: Key areas for improvement include increasing community awareness of dementia and available local services, more support to obtain an early dementia diagnosis, increased help to navigate the system, especially immediately after diagnosis and easier access to appropriate home support services when they are needed. Other recommendations include person-centred care across settings, supported by funding models more education and communication skills training for health professionals and care staff, and greater support for and increased recognition of carers.
Keywords: dementia, home care services, qualitative research, primary health care, aged care, carers, caregiving, rural health, health needs assessment, consumer perspective, general/family practice