Title: Dementia and Cognitive Impairment in the Older Prison Population of England and Wales: Identifying Individual Need and Developing a skilled, Multi-Agency Workforce to Deliver Targeted and Responsive Services
Funder: Department of Health and Social Care

Abstract: Research question: What pathways of care, service provision and staff training packages should be provided to appropriately support older prisoners, aged 50+, with cognitive impairment, including dementia, in England and Wales? Aim: Enhance care pathways for older prisoners with cognitive impairment by understanding individual and service needs and designing a responsive staff training package. Objectives: In England and Wales: 1) Estimate prevalence of cognitive impairment amongst the older prisoner population; 2) Validate the Six Item Cognitive Impairment Test (6CIT) [1] for prisoners 50+; 3) Identify service needs and appropriate care pathways for older prisoners with cognitive impairment throughout custody and on discharge to the community; 4) Establish prison and healthcare staff training needs for identifying, assessing and supporting cognitively impaired older prisoners; 5) Develop an appropriate training support pack. Part 1: Stage 1: 860 older prisoners will be screened for cognitive impairment/dementia using the 6CIT [1] and Montreal Cognitive Assessment (MoCA) [2]. Stage 2: Participants testing positive on the MoCA will be interviewed using the Addenbrookes’ Cognitive Evaluation (ACE3) [3] and standardised assessments to establish risk of violence; activities of daily living needs; mental health needs; brain injury; and social networks. Stage 3: We will estimate current and future prevalence of dementia/cognitive impairment in the prison population to inform the planning and costing of services. Part 2: A questionnaire distributed to healthcare managers of all adult prisons in England and Wales (n = 107) will ascertain current service provision for prisoners with cognitive impairment and identify staff training needs. Part 3: Case studies will be used to explore the support needs of older prisoners with mild, moderate and severe cognitive impairment. Approximately 10 individual prisoner case studies will be identified and ethnographic observations of these cases will be conducted. Semi-structured interviews will take place with a range of staff members, other prisoners, family members/carers, as well as those experiencing cognitive impairment. Part 4: Data from Part 1 will be categorised into a range of representative case types and case vignettes presented to a panel of experts in order to design pathways of care for prisoners with different degrees of cognitive impairment severity. The costs of these packages of care will be estimated and aggregated in relation to prevalence data. The panel will also be asked to contribute to the development of a training pack for the identification of cognitive impairment for staff working in prison, undertaking critical review of consecutive drafts. Analysis: We will estimate the prevalence of cognitive impairment by calculating percentages and 95% Confidence Intervals (CIs) using the MoCA [2] as a ‘gold standard’ measure. Qualitative data will be analysed using framework method. Outcomes: The research will validate a screening tool for cognitive impairment for routine use in prisons; identify service needs and the required pathways of care; and develop a staff training package. Benefits and impact: Older prisoners with cognitive impairment/dementia will have their needs detected earlier and more accurately and appropriate services will be in place to support them. This will reduce costs as efficient preventative services develop.

Lay abstract: We aim to develop better care for older prisoners with confusion and dementia by identifying their care needs and designing a training package for prison officers and healthcare staff which will help them meet those needs. The number of people in England and Wales with dementia is increasing. There has also been a big rise in the number of older prisoners and so prisons are dealing with more people with confusion and dementia than ever before and this is likely to worsen further. Government policy is that prisoners should receive the same quality and range of health services as people in the community but presently, anecdotal evidence suggests that prisoners who are confused are often reliant on the support of other prisoners because of a lack of specialist services and, furthermore, they struggle with resettlement into the community. In Part 1 of our study, we will screen 269 female and 591 male prisoners aged 50+ for dementia/confusion using two different tools, one long and one short. We will determine if the shorter screen is as effective as a longer screen for picking up people who need help; if so, this will make it easier and quicker to screen everyone more effectively. Those who test positive on initial screening will be interviewed again using a more detailed assessment process covering individuals’ risk of violence; security needs; activities of daily living needs; mental health needs; and what support they receive from family and friends. This information will be used to estimate current and future levels of need to guide the planning and costing of services. In Part 2, we will send questionnaires to healthcare managers of all adult prisons in England and Wales (n = 107) to find out how people with confusion/dementia are currently identified and cared for. We will identify what sort of training staff need to help these people more effectively. In Part 3, we will explore the experiences and needs of older prisoners with confusion/dementia by observing their daily routines and talking to staff, other prisoners and their family and friends. This will help us identify the prison-specific needs of this group and how this differs to the community. In Part 4, Data from Part 1 will be categorised into a range of representative case types and case vignettes will be presented to a panel of experts in order to design pathways of care for prisoners with different degrees of severity of confusion/dementia. This will allow us to calculate how much it will cost to provide services now and in the future, based on likely numbers requiring each level of care. We will then create training materials for staff to support them in developing high quality services which meet the full range of needs. Patient and public involvement: The Peer Research Group at the Restore Support Network has been involved in the development of this bid and will continue to support the project by sitting on the management steering committee and expert panel; designing information sheets/consent forms; and advising on issues as they arise. Dissemination: Our comprehensive strategy will include papers in scientific journals; best practice booklets for key organisations; and training materials freely available on the internet. A newsletter style report will also be prepared and disseminated to service users.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL