The Dementia – PACT programme is a five-year project, funded by a National Institute for Health Research (NIHR) Programme Grant for Applied Research (PGfAR), that aims to develop and evaluate a system for dementia support based in general practice for people with dementia and their carers.
Currently, there are a range of dementia support services and roles that exist in order to address the challenges faced by people with dementia and their carers. These services are often valued, but there are still questions in relation to the most effective type of support and where it is best delivered. Commissioners and providers can be reluctant to invest in services where there is limited evidence to support their effectiveness.
The Dementia - PACT programme will address this lack of evidence by developing and evaluating a system for dementia support based within general practice that will provide post-diagnosis care for people with dementia and their carers.
We will develop a Dementia Support Worker intervention that provides ongoing support to meet the needs of people with dementia and their carers:
- mental wellbeing
- physical health
- support to achieve social goals
- improved quality of life.
We have chosen general practice as the setting to deliver the intervention in order to maximise the prioritisation of physical healthcare alongside social and emotional needs. The Dementia Support Workers will work alongside GPs and practice nurses, as well as linking with community resources, and will be supervised by experienced mental health care workers. They will be trained to use a coaching approach in order to agree goals linked to personal priorities, including decisions about future care.
In the first two years, we will further develop the theory of how such an intervention will work by reviewing the literature and talking with experts experts and importantly people with dementia and their carers. We will then put the intervention into practice and obtain feedback in order to make improvements.
We will develop procedures for recruitment to ensure that those who need the intervention most are recruited, in an ethical way. We will also test whether it is possible to recruit people with dementia without carers (who are often excluded from trials). Stakeholders will decide together the outcome measures to be used to evaluate the intervention.
In years three to five, we will run a randomised controlled trial with around 36 practices in two to three UK settings. Practices will be randomised equally between those receiving and those not receiving the intervention. We will measure differences in outcomes such as:
- quality of life
- carer wellbeing
Throughout the programme, we will study how to ensure such an intervention can be put into practice in the challenging health and social care context – both during the trial and following completion. This will help to understand how policy, organisations, training and commissioning can ensure the results of the research are used.
We have brought together people with the right skills and experience, including people with dementia and their carers, to deliver the programme.