“Prison is a place built for the young, fit offender (Newcomen, 2016), yet older people make up the fastest growing demographic in prisons in the UK (O’Moore et al, 2018).”
When paired with the fact that dementia is one of the most pressing healthcare issues in the UK, it is unsurprising that dementia is a serious issue for prisons too.
A new report by Alzheimer Scotland’s Centre for Policy and Practice (ASCPP) brings this challenge sharply into focus. As the proportion of older prisoners continues to rise across Scotland, the system is faced with an increasing number of associated health and social care concerns – including dementia. Responding to this increase, and the complexities it brings, is a growing concern within already-stretched prison environments. Yet there is currently no specific strategy to manage or support it. The ASCPP suggests this is wrong and should quickly become a priority on both health and justice policy agendas.
According to research, the number of prisoners aged over 60 in the UK trebled between 2002-2016 and 7.2% of prisoners aged over 50 in English prisons are currently living with a diagnosis or suspected diagnosis of dementia (Forsyth et al, 2020). Contrasted with general community populations of the same age, this compares negatively – a differentiation that poses stark questions about the ability of the prison system to cope with the intricacies of this disease.
ASCPP researchers set out to probe further, launching a multi-method study to:
- investigate how symptoms of dementia are identified in prisons and what the diagnosis process is; and
- research and develop appropriate interventions to improve the health and wellbeing of older prisoners with complex health needs like dementia.
Project researchers included Professor Debbie Tolson and Dr James Taylor from the University of the West of Scotland, and colleagues Dr Tom Russ, Professor Linday Thompson and Dr Natalie Chalmers from the University of Edinburgh, and Dr Kirstin Anderson from Napier University.
The study was completed in three phases and involved a range of fieldwork interviews. These were conducted with staff and inmates within four Scottish prisons housing the highest concentration of men over 65. Critically, interviews were completed with a cohort of prisoners living with a diagnosis or suspected diagnosis of dementia, along with staff involved in their care. These interviews explored how symptoms are currently identified, and diagnoses reached within prisons, how specific health and social care needs are met, and the general dementia education prison staff have – or feel they need.
Questions covered how the men manage day-to-day life, thoughts on their care, and any opinions they have about progression and release. Staff were consulted on existing barriers to providing care, as well as issues of risk management.
Outputs from these interviews were supplemented by information gained from the health records of the men, for which they provided consent. This offered additional context around any co-morbidities, existing medication, and previous conditions.
Face to face action planning meetings were held, along with online workshops involving stakeholders including a range of prison health care staff, prison staff, staff from community criminal justice and dementia organisations, and people with lived experience of dementia. This methodology ensured an accurate overview of the current situation, and an understanding of problem areas.
The result: two important co-produced innovations. The first is a Model of Care which explains the processes that need to be in place to ensure an individual receives timely and personalised care by trained staff who have the expertise to provide high-quality interventions. The second is a Care Pathway which outlines how identification of need, assessment, diagnostic care and ongoing support for people affected by dementia can be assured in a prison setting, despite their disempowered status.
An additional key output is the new website, Home - Dementia in Prisons. This has been specially designed for practitioners working in, or at the interface of, prisons and hosts the project reports which give detailed information about the research methods and findings. There is also an informative animation and a series of resources to support dementia care for prisoners.
To summarise, the study suggests that there is still a long way to go before dementia support mechanisms within prisons are streamlined. There are examples of good practice but overall, the needs of older prisoners can be overlooked due to staffing levels, a lack of appropriate training, and security pressures. This means that the complex needs of this vulnerable group can be missed, and the right support is not routinely provided. Dementia symptoms can be exacerbated by the prison environment and routine, and the ASCPP report suggests failings within the current prison pathway compound this situation.
There are profound ethical questions about the balance between providing justice and providing care – but the fact is, people do not lose their rights to health care when they enter prison. Restrictions on liberty and autonomy should not mean that healthcare needs are either missed or disregarded. This is especially important for people living with dementia as they are faced with managing complex needs in a highly restricted environment. Despite limitations on choice and control, these prisoners should still have input into the type of care they receive and how that is delivered.
The ASCPP report provides a fascinating insight into the hidden problem of dementia in prisons, and the complexities of dealing with the deteriorating health of an aging prison population. Practical factors such as prison leadership and protocol, constraints on staffing and funding, training and security concerns are considered, and the findings provide a robust evidence base to inform policy and practice in this sphere.
Find out more here: Home - Dementia in Prisons