A qualitative systematic review of the role of families in supporting communication in people with dementia

BACKGROUND: Cognitive–communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. METHODS & PROCEDURES: A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full‐text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. OUTCOMES & RESULTS: The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) ‘identities changing’ reflected how interactions within the family systems impacted on identities; (2) ‘loss’ reflected the grief experienced by families due to changes in communication; and (3) ‘developing communication strategies’ highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. CONCLUSIONS & IMPLICATIONS: The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family‐centred practice as recommended in policy. WHAT THIS PAPER ADDS: WHAT IS ALREADY KNOWN ON THE SUBJECT: There is increasing recognition of the impact of dementia on whole families and the need for family‐centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors’ knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well‐being. WHAT ARE THE POTENTIAL OR ACTUAL CLINICAL IMPLICATIONS OF THIS WORK? This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship‐centred care and support that they provide.