START-online: acceptability and feasibility of an online intervention for carers of people living with dementia

Samantha M Loi,Colleen Doyle,Ellen Gaffy,Anita Panayiotou,Jodi Chiang,Michelle Kelly,Hannah Capon,Joanne Tropea,Briony Dow,Christina Bryant,Gill Livingston

doi:10.1186/s40814-022-00999-0

Abstract

BackgroundWith increasing numbers of people living with dementia relying on family to care for them at home, there is an urgent need for practical and evidence-based programs to support carers in maintaining their mental health and well-being. The objective of this study was to evaluate the acceptability and feasibility of a modified STrAtegies for RelaTives (START) program delivered online (START-online).MethodA mixed-methods non-blinded evaluation of START-online (using Zoom as videoconferencing platform) for acceptability and feasibility (completion rates and qualitative feedback through surveys and focus groups) and quantitative evaluation. This occurred at the National Ageing Research Institute, in metropolitan Victoria, Australia.ResultsTwenty-nine eligible carers were referred, 20 (70%) consented to the study. Of these, 16 (80%) completed all 8 sessions, 2 completed only 3 sessions, and 2 withdrew. Carers’ qualitative feedback indicated that the therapist interaction was valued, content and online delivery of the program was acceptable. Feedback was mixed on the appropriate stage of caring.ConclusionSTART-online was feasible and acceptable for carers, including those living outside of metropolitan areas who might otherwise be unable to access face-to-face programs. With the recent COVID-19 pandemic necessitating social distancing to avoid infection, interventions such as this one have increasing relevance in the provision of flexible services.

Highlights

All information covered Identified how carer wants to be referred to and used this terminology during session OVERVIEW OF MEMORY LOSS All information covered Successfully sought to elicit identified problems/symptoms that carer has noticed BEHAVIOUR AND EMOTION All information covered Successfully completed table of related behaviours, encouraging carer to think of these Successfully elicits behaviours that are upsetting to carer, or if carer cannot think of any manages this appropriately
The STrAtegies for RelaTives (START)-online program was found to be acceptable to carers
With increasing numbers of people living with dementia (PLWD), there is a corresponding increase in the number of informal carers required to support them to stay at home [1]

Summary

Introduction

All information covered Identified how carer wants to be referred to and used this terminology during session OVERVIEW OF MEMORY LOSS All information covered Successfully sought to elicit identified problems/symptoms that carer has noticed BEHAVIOUR AND EMOTION All information covered Successfully completed table of related behaviours, encouraging carer to think of these Successfully elicits behaviours that are upsetting to carer, or if carer cannot think of any manages this appropriately. Identifies the behaviour causing most stress Explains behaviour chart appropriately MANAGING THE STRESS THAT CARING BRINGS All information covered with appropriate interaction, asking carers if these feelings describe how they felt recently Successfully explain and complete stress rating, or if carer unwilling/unable to, manage this appropriately Successful ask questions about recent stressful situation STRESS AND YOUR BODY All information covered SOCIAL CHANGES All information covered THE IMPORTANCE OF REDUCING STRESS All information covered SUCCESSFULLY TEACH SIGNAL BREATH Rate carer stress before and after OTHER Summarise session appropriately Explain signal breath and behaviour record to be practices in week Keeping the carer focussed on the manual (scale 1 not at all to 5 very focussed) for the focus groups were sent via email, followed by two reminders and a follow-up telephone call This resulted in eight carers participating in three focus groups conducted via Zoom. Despite the need to provide ongoing support and practical strategies to assist carers, they may lack sufficient time and ability to access these

Objectives

Methods

Results

Discussion

Conclusion