Ten Years of Dementia Service Implementation

Co-investigator: Jeremy Golden (Research Assistant)

Project Outline

Background: Supporting people living with dementia and their family carers with timely psychosocial supports to enable them to live as well as possible is a commitment of the Irish National Dementia Strategy (Department of Ireland, 2014) and a global public health goal (WHO and ADI, 2012). Community-based services, particularly those at the forefront of developing innovative, personalised supports, play an important role in helping to achieve this policy aspiration. This study, led by Dr Maria Pierce, Assistant Professor in Social Policy, School of Social Policy, Social Work and Social Justice, examined the evolution of an innovative, community-based service providing psychosocial supports to people with dementia and their family carers over the years 2011-2022, and seeks to understand the contribution it is making to the local, regional and national dementia care landscape. The study also sought to identify both challenges and opportunities for the service’s long-term sustainability.

Research Aims: The overall aim of this study was to provide evidence to help inform future development and sustainability of Living Well with Dementia, incorporate the views and perspectives of a range of stakeholders including people with dementia and their family carers.

Research Objectives: The objectives of the study were to:

• Succinctly describe the evolution of the Living Well with Dementia Service in South Tipperary over the years from 2012 to 2022;
• Provide an overview of the supports that the service is currently providing to include an outline of the role and contribution it is making to implementing the National Dementia Strategy and an assessment of how well the service aligns with the HSE’s emerging Dementia Model of Care;
• Outline the role and contribution that the service makes to the lives of people with dementia and their family carers using the service, including from the perspectives of people with dementia and their family carers;
• Provide an overview of how the service currently operates and where it is currently at with respect to existing resources, skills, and alliances, including an assessment of strengths and weaknesses, and its positioning within the national, regional, and local dementia ecosystem;
• Identify opportunities for change within the environment in which the service operates and identify any constraints external to the service which are found to be limiting opportunities for change.

Methods in brief

This was a mixed-methods study conducted between September 2022 and February 2023. Qualitative methods were used to explore the experiences and views of a total of 47 study participants. Two focus groups were held with staff (n=8) at Living Well with Dementia in South Tipperary. Individual interviews were held with people with dementia (n=8) and family carers (n=16). Individual interviews were also help with a range of health professionals working in other services in South Tipperary (n=9) and senior management in HSE and FCI (n=6). The study included a review of service activity and expenditure data and an analysis of evaluation forms completed by people with dementia and family carers.

Findings

This study identified three distinct phases in the evolution of Living Well with Dementia in South Tipperary: 2012-2015, a period of establishment and demonstration of the value of the 5 Steps to Living Well with Dementia in South Tipperary project, from which Living Well with Dementia originated; 2015-2019, a period of embedding the service in the local infrastructure and expanding supports; and 2020-2022, a period of upheaval and organisational change.

The report provides an overview of Living Well with Dementia and what makes the service distinct. It describes its four main components (i.e. Dementia Nurse Specialist, OT; Dementia Support Worker service, and Memory Technology Library) and how these fit together under the umbrella of Living Well with Dementia; the interdisciplinary nature of the service; the wide range of practical, personalised, post-diagnostic, psychosocial supports and interventions provided; and contribution it makes to national policy and programme development and implementation. Data presented on trends in referrals, service use and funding show a general pattern of increasing demand, as well as increasing use and range of supports provided by Living Well with Dementia, with no increase in funding since 2015. 

 Interviews with study participants revealed that Living Well with Dementia has established good information and referral pathways with other services. It is regarded as a progressive and unique service and is highly valued by people with dementia, family carers, health professionals and other stakeholders. The specialist nurse and OT, with their multiple roles and interdisciplinary working, are highly valued. The Dementia Support Worker service is perceived to be a novel and vital service with many benefits for the people with dementia and their family carers. The Memory Technology Library is an important resource for service users and health professionals. Living Well with Dementia not only addresses a gap but complements other supports and is well integrated with other services in South Tipperary. 

Demand for the Living Well with Dementia service, which is high, is expected to increase in the future. This presents a challenge for Living Well with Dementia, as staffing levels are insufficient to meet the demand and adequately respond to assessed need. There is evidence that Living Well with Dementia offers value for money, but it is operating under budgetary constraints. Other issues are staff recruitment and retention and the need for succession planning. Delivering support to people with dementia across such a large area as South Tipperary, with its many small towns and remote rural areas, is challenging for Living Well with Dementia as it is for other health and social care services.  Another ongoing challenge is that the premises in which Living Well with Dementia is based is not guaranteed to the service. Family Carers Ireland (FCI) has facilitated the continuation of Living Well with Dementia to date through grant aid agreements in place between the HSE and FCI since October 2015. The most immediate challenge facing Living Well with Dementia has been restructuring within FCI, ultimately leading to the organisation deciding to end its role in facilitating Living Well with Dementia at the end of 2023. The OT and MTL are to come under the HSE’s remit. However, there is still the urgent matter of securing a host organisation for the nurse and DSW service.

Conclusions

This study provides valuable information on how Living Well with Dementia has evolved over a ten year period and how it currently operates, the benefits it has for people with dementia, family carers and health professionals in South Tipperary and shows the value case for its existence. A set of recommendations presented are aimed at addressing the challenges facing Living Well with Dementia. A sustainable funding mechanism must be found for this service to be secured into the future and developed further.

Outputs and publications

• Pierce, M. and Golden, J. (2023). Living Well with Dementia in South Tipperary: Ten Years of Service Implementation, Sustainability into the Future, Clonmel: Living Well with Dementia in South Tipperary. Link to report to follow.
• The research report will be launched at an event organised by Living Well with Dementia in South Tipperary. The event will take place on 11 September 2023 in the Memory Technology Library on the grounds of South Tipperary University Hospital, Clonmel. For further information about the event, please contact: (opens in a new window)livingwellwithdementia@hse.ie; Tel: 052-6177080; Mob: 087-0550050
• The study findings will be presented at the Irish Gerontological Society 70^th Annual and Scientific Meeting “Looking to the Years Ahead: Europe’s Fastest Growing Older Population”, on Saturday 30 September 2023 at Galmont Hotel, Galway. The conference abstract will be published in Age and Ageing. 

For further information about this research project, please contact: (opens in a new window)maria.pierce@ucd.ie