A post‐diagnosis information and support programme for dyads—People living with dementia or mild cognitive impairment and family carers: A feasibility study
Authors: Stockwell‐Smith Gillian , Moyle Wendy , Grealish Laurie , Comans Tracy , Varghese Paul , Whitlatch Carol , Orsulic‐Jeras Silvia 
Published: March 2024

Aim

The aim of the study was to establish the feasibility of delivering a structured post‐diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings.

Design

A two‐phase explanatory mixed‐method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five‐part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self‐efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility.

Methods

Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post‐programme and 3‐month follow‐up. Post‐programme semi‐structured interviews were conducted with dyads and programme facilitators.

Results

Twenty‐nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members.

Conclusion

Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow‐up time to 6 months.

Impact

This study established the feasibility of registered nurses delivering a post‐diagnosis information and support programme for people living with early‐stage dementia or mild cognitive impairment and their informal carers in primary care settings.

The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time.

Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance.

Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting.

Reporting Method

The authors have adhered to the EQUATOR STROBE Statement.

Patient or Public Contribution

A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.