Title: Improving the health and well-being of older people with cognitive frailty and dementia in prison
Funder: Dunhill Medical Trust

Abstract: The Scottish Prison Service believe they are ill equipped to recognise and respond to the increasing numbers of older prisoners with cognitive impairments. Suggestions for how to care for this marginalised group needs to move beyond speculation if we are to develop new effective ways to improve their health and well-being 1, 2, 3, 4, 5. The number of those over 60 years trebled in UK prisons between 2002 and 2016 6. English data suggested a 7.2% prevalence of dementia of those over 50 years in prison, of these 70% had physical health problems, 40% were categorised as medium/high risk to the public and 20% required help with activities of daily living 7. Improved ways of recognising and managing prisoners with complex health needs including dementia is urgent 8, 9, 10, 2. The consequences of not doing so may heighten fear and distress, reduce opportunities to access appropriate healthcare interventions and support, and facilitate a violation of human rights. The study aim is to identify and develop new effective ways to improve the health and well-being of the increasing numbers of older prisoners living with dementia and cognitive frailty. This mixed methods study will investigate current care and lived experience of dementia in prison, and co-design research informed healthcare pathways. Through stakeholder interviews (n=12-16) it will describe the existing diagnostic and post diagnostic care pathways and the ways later life well-being is promoted, and health risks reduced in four Scottish prisons with the largest populations of over 65 years. We will construct ten in-depth prisoner centred case studies with the person and up to three others involved in their health, social, spiritual or custodial care to illustrate the lived experience of ageing in prison with dementia. Following rigorous thematic analysis, we will present the findings in the form of case vignettes and visual maps to three stakeholders groups: 1) families and prisoner representatives 2) prison and healthcare professionals 3) strategic leaders. These will underpin the co-design of a referral, diagnostic and post diagnostic healthcare pathway and co-produced model for promoting later life health and well-being in prison and on release. These inclusive methods have the potential to improve the health and well-being of older people through developing research informed care pathways and develop gerontological science in secure settings. It will generate evidence to underpin equitable healthcare and support regimes in prisons aligned with best dementia care in Scotland and beyond.

Lay abstract: This project will develop new effective ways to improve the health and well-being of the increasing numbers of older people who are living with dementia in prison. The development of a care pathway to promote health and well-being in prison and on release will directly benefit this population and NHS and prison staff. The number of UK prisoners over 60 years has trebled between 2002 and 2016 (CPA, 2016). It is estimated that 7.2% of men over 50 years in prison have dementia (Forsyth et al 2018). The Scottish Prison Service believe they are not equipped to recognise and respond to the increasing numbers of older prisoners with cognitive impairments. The impact of not being recognised as having dementia in prison means appropriate healthcare interventions cannot be offered, people experience fear and distress and their human rights can be violated. There have been many calls to address the healthcare challenges associated with this growing group but no care pathway has been developed for healthcare and prison staff to address their complex needs. To understand current healthcare pathways we will interview 12-16 staff from the four Scottish prisons with the largest over 65 years population. To understand dementia related experiences, healthcare needs, risk management and release processes we will build case studies. These will include ten prisoners living with dementia and up to three significant others involved in their health, social, spiritual or custodial care. These findings will be presented to three stakeholder groups 1) families and prisoner representatives 2) prison and healthcare professionals 3) strategic leaders. Stakeholder workshops will offer an opportunity to use the research findings to design an evidence informed healthcare pathway and a model for promoting well-being and reducing health related risk. We have involved a number of stakeholders including people with dementia, groups representing prisoners and their families in the preparation of this application. They will participate in the research as members of the Research Advisory Group (RAG) and or in the stakeholder workshops. Accessible summaries will be prepared for prisoners’ magazine, professional journals and the websites of RAG members. The social media platforms of the research team and RAG members will disseminate findings in video, blog and summary format. We will produce a guidance document on the management of prisoners with dementia for prison and NHS healthcare teams. We will present findings at interdisciplinary, international and UK conferences, preparing papers for publication in academic journals.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL;GENERIC HEALTH RELEVANCE