Understanding how community-dwelling persons with early dementia perceive health and community services: Informing the dementia strategy of Newfoundland and Labrador, Canada

Background With an increased aging population, the number of individuals with dementia is expected to rise. The onset of dementia marks the start of negotiating access to a wide range of health and social services to find practical and emotional supports to deal with the management of changes and subsequent challenges that individual with dementia face. The toll of dementia goes beyond the health care system, affecting families and caregivers' quality of life. This places more pressure on family caregivers and health care institutions to provide services for affected individuals. It is important to understand the service needs of this population to enable them to live at home longer, contribute to society and maintain a positive quality of life.Aim To increase understanding of how persons living at home with early dementia and their caregivers/significant others currently perceive and interact with health and community-based services and service providers.Methods A qualitative descriptive approach was used to explore the experiences of individuals with early dementia and care providers with health and community-based services using semi-structured interviews and content analysis.Results Participants included 16 individuals 50 years and older with mild/early dementia living at home, 22 informal caregivers of individuals with mild/early dementia, and 5 key community informants (community health nurses and social workers). Four thematic categories of barriers and two thematic categories of facilitators for access to and uptake of supportive services were identified. Five strategies to inform the development of an action plan to enhance access to, and uptake of, supportive services were determined.Conclusions Early recognition of dementia through education and publicity enhanced public awareness, attention, and social inclusion with dementia-friendly neighborhoods and facilities need to be considered to achieve effective dementia-related services. Inclusion and recognition of the wishes of persons with dementia is key.