Evaluation of the respite element of the Genio Dementia Programme

Title: Evaluation of the respite element of the Genio Dementia Programme

Research team: Prof. Suzanne Cahill, Dr. Maria Pierce and Dr. Andrea Bobersky, Trinity College Dublin.

Results:

Context

In 2012, four sites around Ireland received funding to develop a range of innovative community responses which would enable people with dementia to remain living in their homes for as long as possible, having full and participating lives. This initiative was part of a programme of work funded by the Health Service Executive and the Atlantic Philanthropies to develop, expand and improve community-based dementia services in Ireland. Alongside the innovative work being carried out in four sites, a supporting programme of research and evaluation was commissioned to evaluate the new developments and to collect preliminary evidence on which to develop future dementia services. This two-part evaluation was on the effectiveness of two respite initiatives developed across two dementia sites supported by Genio, identifying the obstacles and facilitators to the use of respite care for people with dementia and their families. 

1. Flexible Respite Options of the Living Well with Dementia Project in Stillorgan and Blackrock

This report describes an evaluation of an innovative respite initiative in one of the sites; Stillorgan and Blackrock in Dublin. Based on discussions with people with dementia and family carers, a number of community-based supports were developed which were designed to meet the needs of both the person and carer and this report presents an evaluation of one of these, an activity/exercise group. The evaluation was carried out in the very early stages of the development of these community supports, involving nine people with dementia, eight family carers and one formal carer. Although it is a small scale exploratory study, the use of mixed methods, capturing both quantitative and rich qualitative data, provides new insights into the individual’s experience of living with dementia, the caregiving role and the impact of this initiative on both.

  • Key findings

The main findings were that these interventions addressed a variety of complex needs for both the person and the carer, often in different ways. ‘Mainstream’ recreational and social activities coupled with an innovative transport solution, produced a range of positive outcomes for the person and the carers. The family carers particularly welcomed the structured and integrated aspect of the programme, combining physical exercise, psycho-social stimulation, carer support groups, transport provision and key contact workers.

As mentioned, the report captures peoples’ experience of this initiative at a very early point in time and when respite supports were at a very early stage of development in this site. Suggestions for changes to the programme have already been incorporated and a further range of respite supports and services have now been put in place and are being continuously refined in response to the unique needs of each person and family. An evaluation of this more fully developed service is planned for 2015. 

2. The Dementia Support Worker Initiative of the 5 Steps to Living Well with Dementia in South Tipperary Project

This report describes an evaluation of an innovative respite initiative in one of the sites; South Tipperary. The focus of the initiative was to provide individualised supports for people with dementia and their family carers using dementia support workers. This study was carried out in the early stages of the development of this respite service, involving 8 people with dementia and 12 family carers. Even though this is an exploratory study on a small scale, using mixed methods to capture both quantitative and qualitative data has provided new understanding of living with dementia, the role of caregivers and the impact of an initiative like this on both groups. 

  • Key findings

There was a high level of satisfaction with the service expressed by both the person with dementia and the family carers.  In particular, the flexibility and responsiveness of the service were highly valued and the individualised tailored activities for each individual conveyed further benefit. In addition, having the same dementia support workers consistently and their training, skills and professionalism were noted as being very important factors in contributing to the positive evaluation of the initiative.

It is worth noting that the report captures this initiative at a very early point in time and that, in response to feedback from the individuals and families using the service, as well as input from other stakeholders and the findings of this evaluation, the service has been significantly redesigned to be more responsive to the diverse and complex range of individual needs that present. An evaluation of this redesigned service is planned for 2015.