Written by Dr Chris Hayre.
Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes. There are an estimated 12,800 people with dementia living in Suffolk and that number is expected to rise by approximately 40% over the next 10 years, to 17,700 by 2025, and by over 90% over the next 20 years to 24,400 by 2035. Despite recent rapid rises in local dementia diagnosis rates, it is estimated that 40-45% (5,000) of people with dementia in Suffolk have still not received a formal diagnosis, and therefore do not have access to therapeutic interventions and support.
There is a three and a half-fold variation in the rates of dementia diagnosis between GP practices in Suffolk; this level of variation is unlikely to be explained by clinical variation alone, and may be contributing to health inequalities. Applying national estimates of incidence to the local population, there would be an expected 500 new cases of dementia approximately per year in those aged over 65 years.
Although there was a comprehensive range of services and organisations serving the needs of Suffolk people affected by dementia, people were overwhelmed by the myriad of differing offers, how they differentiate, how they can be accessed, which organisation is delivering the offer and which are most appropriate to their needs. This was leading to poorer outcomes, accelerated crisis and dependency. Commissioners’ view on the previous dementia pathway was it was too complex, passive, impersonal, deficit-focused and overly concentrated on expensive acute interventions, and did little to maintain independence and build resilience.
To respond to this need, Sue Ryder developed the “Dementia Together” project. This service aims to offer a single point of contact for people curious or concerned about Dementia, so that people only have to tell their story once. Dementia Together works with local community services in order to provide a coordinated and responsive support for individuals at every step of the way – whether it is information about Dementia and/or connecting with others who wish to understand or plan for the future. The service extends beyond a person with Dementia, as it supports carers and family members, thus delivering a holistic approach. The University of Suffolk has been commissioned by Sue Ryder to evaluate their ‘Dementia Together’ project. The research project team is made up of members from the Centre for Health and Wellbeing and Suffolk Institute for Social and Economic Research.
The possible scope of the new model is large and ambitious. Dementia Together, led by Sue Ryder aims to take a community asset-based approach and works in partnership with a number of organisations. These include statutory services such The Norfolk and Suffolk Mental Health Trust, Suffolk Community Services and Suffolk County Council but also local Dementia Action Alliances and community groups, with a view to simplifying the pathway for people needing support, making the most of and building on support available and encouraging growth in local support and information available for people.
The evaluation research adopts a mixed method approach, thus utilising both quantitative and qualitative research paradigms in order to meet the aim and objectives of the evaluation. It adopts the underlying principles of highly appropriate evaluation and research methodological approaches. Our methodological approach is both participatory and based on the principles of reciprocity in that it is intended that those involved in the evaluation benefit from the process (Maiter et al 2008).
The research will generate both quantitative and qualitative data from a variety of different stakeholder groups to measure the success of the project against the expected outcomes mentioned below and to identify potential aspects for service development and improvement. To evaluate the success of the project against the expected outcomes for the project, the team works collaboratively with Sue Ryder and associated stakeholders. We also recognise that not all registered people with Dementia will be able to complete and/or participate in this evaluative methodology.
The research will take place over a period of twelve months, using questionnaires and focus groups with relevant participants. It is intended that this methodological approach will enhance our current knowledge and understanding of the service as well as experiences of those with dementia and/or family and carers who simply require multi-faceted support. The research will examine the extent to which the service delivery model (1) complements the Integrated Health and Social Care principles of delivering secondary and tertiary prevention and (2) its effectiveness in empowering service users through better access to simplified advice and information.
At the time of writing this blog, the interim project findings have been drafted.
Maiter, S., Simich, L., Jacobson, N. and Wise, J., 2008. Reciprocity: An ethic for community-based participatory action research. Action research, 6(3), pp.305-325.