Access to communication support for community-dwelling people with dementia: A mixed methods study exploring local perspectives within the United Kingdom context

Hockley, Anna; Moll, Deborah; Littlejohns, Jemima; Collett, Zoe; Henshall, Catherine

Journal Article

Access to communication support for community-dwelling people with dementia: A mixed methods study exploring local perspectives within the United Kingdom context

Abstract

Introduction. Communication difficulties occur in all dementia subtypes. This can affect individuals’ identity, relationships, and quality-of-life of people with dementia and their relatives. Professional guidelines recommend access to communication intervention, for example through speech and language therapy (SLT) services, but anecdotal evidence suggests that the type and availability of this provision varies. Aims. This study aimed to explore the communication needs of people with dementia, their quality-of-life impact, and local and national service provision. Methods. This mixed-methods study comprised three phases: 1. An online survey of UK SLTs (n = 74) examined the type and availability of communication intervention for people with dementia. 2. Semi-structured interviews with people with dementia (n = 7) and relatives (n = 9) explored experiences of communication difficulties and support received. 3. Two focus groups with local NHS Trust staff including: SLTs (n = 7), and dementia HCPs (n = 6). Data was analysed using descriptive statistics and thematic analysis. Results. Four main themes were identified: dementia-related communication changes; accessing support for communication; identifying communication strategies; and service considerations. The survey identified inconsistent or absent communication input for many people with dementia. Interview and focus group findings highlighted diverse dementia-related communication needs which impacted quality-of-life and support required. Participants suggested service-level considerations for addressing these needs. Conclusion. Dementia-related communication impairments are diverse and can considerably impact quality-of-life of people with dementia and their relatives. Communication intervention service-provision varies widely, resulting in unmet needs. These findings add to the growing evidence-base on dementia-related communication difficulties, and highlight a need to develop clinical services.