Service provision for older adults living in prison with dementia/mild cognitive impairment in England and Wales: a national survey

ABSTRACT

Older adults are the fastest growing age sub-group in prison. Prison, health and social work staff are required to provide support for complex health and social care issues including Dementia and Mild Cognitive Impairment (MCI). Dementia care for those living in the community is a national priority. There is, however, a lack of empirical evidence regarding service provision for those living in prison. This study was the first national survey of England and Wales to establish current service provision. Questionnaires were distributed to heads of healthcare and governors of all prisons in England and Wales. Our response rate was 85 (78%) for governors and 77 (71%) for healthcare managers. Reported prevalence of dementia/MCI from respondents was well below prevalence estimates from research. Furthermore, only 23 prisons (30%) had routine screening, and the majority reported that they did not have a defined care pathway (53; 69%) for dementia/MCI. Overall, the provision of services for those experiencing symptoms of dementia and MCI in prison is sub-optimal; however, many respondents reported aspirations to enhance services for this group. The forthcoming Ministry of Justice’s national strategy for ageing prisons should include recommended care pathways for dementia and MCI to strive towards equivalence of care to community settings.

KEYWORDS:

• Older prisoners
• dementia
• Mild Cognitive Impairment
• prison

Introduction

Background

Those aged 60 and over are currently the fastest growing age group in prison, and with increases in convictions for historic sex offences and longer custodial sentences, this trend is likely to continue (Ministry of Justice, 2016). Older prisoners are defined as those aged 50 and over in recognition that social deprivation, substance misuse and other lifestyle factors contribute to estimations that those in prison have the physiological health 10 years senior to their community counterparts (S. Fazel, Hope, et al., 2001). Seventeen percent of the prison population in England and Wales are defined as ‘older’ (aged 50 or over) (Ministry of Justice, 2022).

Aside from the predictable general support needs that arise in an older population, there are several specific age-related conditions that require attention if this growing subgroup is to be adequately cared for in the prison environment. Dementia is one of those conditions. In the community, 850,000 people in the UK have dementia, with predictions that by 2025 more than 1 million will be affected, surpassing 2 million by 2051 (Brooke et al., 2020). Estimates from previous studies place the prevalence of dementia in prisons between 1% and 7% (S. Fazel, Hope, et al., 2001; Hayes et al., 2012) and our recent study estimated a prevalence of 8% for dementia and mild cognitive impairment (MCI) across the older adult prison population (Forsyth et al., 2020).

According to the principle of equivalence of care (Joint Prison Service and National Health Service Executive, 1999), the National Health Service (NHS) standards should be applied equally to prison healthcare, including the National Service Framework for Older People (Department of Health, 2001). However, the prison regime, environment, security, and other logistical issues often mean that community-based guidelines cannot be implemented fully, and the absence of specific custodial guidance can often mean this equivalence of care is not upheld. As far back as 2013, the Justice Select Committee Inquiry made specific recommendations around the development of a national strategy for older prisoners (House of Commons Justice Select Committee, 2013), this is finally coming to fruition and due to be published in 2023. As part of this strategy, there needs to be a focus on the provision of care for people with dementia (Brooke et al., 2020; Du Toit et al., 2019; Peacock et al., 2019).

Dementia and mild cognitive impairment in prison

Three recent systematic reviews (Brooke et al., 2020; Du Toit et al., 2019; Peacock et al., 2019) have outlined some of the current problems faced by those with dementia in prison including lack of routine screening, assessments, and continuity of care for MCI/dementia; limited awareness of dementia amongst prison staff and negative consequences of cognitive impairment in the prison setting, such as victimisation, unwarranted disciplinary actions and difficulty with compliance. Furthermore, the prison environment itself is not supportive of the needs of those with dementia/MCI. Poor lighting and excessive noise, both common in the prisons, can exacerbate confusion, increase the likelihood of falls and be very distressing for people with dementia (Moll, 2013).

Other issues were identified in the Her Majesty’s Inspectorate of Prisons (HMIP) thematic report on social care in prisons in England and Wales (HMIP, 2018) including ambiguity around responsibility for social care between the prison and local authority; lack of understanding around referral options; administrative delays in accessing support; and inadequate adaptations to the physical environment. Despite this, there are clear elements of localised attempts to develop focussed provision for this population and the same report drew on good practice in identification, use of peer supporters¹ and effective liaison with the local authority. However, it is clear that there is great variation and inconsistency between prisons in their provision of social care services or support for prisoners who do not meet the threshold for social care from the Local Authority, leaving vulnerable groups, such those experiencing dementia and MCI at a significant disadvantage in custody.

Survey objectives

We aimed to develop a better understanding of the whole prison estate in England and Wales in terms of current practices, provision of care, staff training, social care arrangements and other considerations relating to dementia and MCI in prison. The study also explored some of the key themes identified in the HMIP report such as the need for physical modifications, relationships with local authorities, screening and assessment and use of peer support. Additionally, we sought to gather the views of key professionals on what is working well and what is important to be considered in recognised goals such as improved training for staff.

Method

Procedure

Questionnaires were sent to the governors and heads of healthcare in all prisons in England and Wales (men and women’s prisons) between June 2017 and June 2019. Questionnaires were distributed via post or email and were accompanied by a cover letter. The research team followed up via email, telephone, or letter as appropriate, and offered respondents the option of completing either using a hard copy, electronically, or over the phone with a researcher in June 2019. It is important to note that on occasion governors and heads of healthcare delegated the completion of the questionnaire to an appropriate member of staff.

Questionnaire design

The governor questionnaire contained items covering the following areas:

• Service provision for individuals with dementia or MCI;

• Details of any additional support or modifications to the environment;

• Existing training for prison staff on dementia/MCI;

• Training needs in relation to dementia/MCI; and

• Social care provision.

The healthcare questionnaire covered similar items to the governor questionnaire, in addition to the following:

• Screening of older prisoners and identification of dementia/MCI;

• Details of any support groups for individuals with dementia/MCI;

• Details of any care pathways for dementia/MCI;

• Use of peer supporters; and

• Social care arrangements.

Data analysis

Data was analysed using Statistical Package for the Social Sciences (SPSS) for windows version 22. Descriptive statistics were produced.

Results

The analysis is based on 85 (78%) completed governor questionnaires and 77 (71%) completed healthcare questionnaires between June 2017 and July 2019. Only four (3%) prisons returned neither questionnaire. Unfortunately, the project team were unable to determine how many older prisoners are in custody at these four establishments. Of the establishments who responded, 11 (13%) were privately contracted prisons and 48 (62%) had either partial or fully privately managed healthcare.

Definition of ‘older prisoners’

Consistent with the general definition of older people in prison in the literature, most respondents (64% of prison staff and 56% of healthcare staff) defined ‘older prisoner’ as being over 50; however, both governors and healthcare managers set this threshold at aged 65 or over in 12% of establishments. All references to ‘older prisoners’ below refer to individuals aged 50 and over.

Prevalence

Table 1 provides a breakdown of how many older prisoners were reported with a dementia or MCI diagnosis across all prisons.

Table 1. Cumulative and average numbers of older prisoner with a mild cognitive impairment diagnosis in prisons in England and Wales.

Diagnosis/status	Mean number per establishment	Cumulative number
Dementia diagnosis	5	141
Waiting/undergoing assessment for dementia	3	45
Mild Cognitive Impairment diagnosis	2	12

Older prisoner leads

Older prisoner leads were common across the estate, more were custodial staff as opposed to healthcare staff ([67; 79%] [45; 59%]). In most cases, older prisoner leads were governor-grade (52%) or nurses (59%), respectively, but in some cases were held by more junior members of staff (prison officers, 20%, and healthcare assistants, 19%). Activities that were considered the responsibility of the healthcare older prisoner leads included producing individual care plans, conducting screening assessments for care needs, liaising with community providers, disseminating good working practices and wellbeing checks.

Identification and screening

Healthcare staff reported that older adults with dementia or MCI were most commonly identified during a health consultation for another issue (64; 83%) and/or through screening on reception (62; 81%). Routine dementia screening for all older prisoners on reception was conducted at only 23/77 (30%) prisons. Fifteen out of 77 (19%) prisons reported that they routinely screened all older prisoners (not just new receptions) for dementia or MCI, with most of these routinely reassessing every 7–12 months (9; 60%). Routine screening prior to release as part of resettlement was conducted at only eight (10%) establishments.

Table 2 provides a breakdown of screening tools used across the establishments (note, some establishments use more than one).

Table 2. Routine screening tools used for older prisoners.

Screening Tool	Frequency (% out of 23)
Mini Mental State Examination (MMSE)	14 (61%)
Addenbrooke’s Cognitive Evaluation (ACE)	8 (35%)
Montreal Cognitive Assessment (MoCA)	5 (22%)
Six-Item Cognitive Assessment (6-CIT)	4 (17%)
General Practitioner Assessment of Cognition	3 (13%)
Cambridge Cognition Examination (CAMCOG)	2 (9%)
Another locally developed tool	2 (9%)
Clock Drawing Test	1 (4%)

Care pathways

Just over half of the prisons (44; 57%) reported that they have a clear referral process for more detailed assessment of older prisoners with suspected dementia or MCI and 29 (38%) reported that external health and social care services provided this assessment or treatment. The majority of prisons reported that they did not, however, have a defined care pathway for prisoners with dementia or MCI (53; 69%), though notably just under a third of these (16; 30%) were in the process of developing one. Care-planning between healthcare and prison staff occurred to varying degrees in 53 (69%) establishments. This was overall fairly rudimentary and involved attending care planning meetings (77%) and employing peer supporters (49%).

Additional support and modifications to the physical environment

Around half of the prisons surveyed (46; 54% of Governor questionnaires and 36; 47% of healthcare questionnaires) described additional support/modifications to the prison environment which had been provided/developed specifically for prisoners with dementia or MCI.

Eighty-seven percent of prison staff reported the use of peer supporters. Seventy-two percent of healthcare staff reported the use of regular health screening. Table 3 provides a breakdown of types of modification taken from governor or healthcare questionnaires. The source of this data is indicated in the table.

Table 3. Additional support/modifications to the prison environment.

Modification	Frequency (%)
Handrails^1	31 (67%)
Provision of incontinence materials^2	28 (78%)
Regular health screening^2	26 (72%)
Bigger/more accessible prison cells^1	25 (54%)
Exercise/activity/canteen^1	19 (41%)
Signposting/highlighting of key areas or items^1	10 (22%)
Improved lighting^1	6 (13%)
Provision of easy to remove clothing^1	5 (11%)
Removal of mirrors^1	1 (2%)

¹Taken from governor questionnaire; ²taken from healthcare questionnaire.

Other less frequent modifications, not mentioned in Table 3, included alarm call bracelets/personal alarms, magnifying screens, long handled equipment, memory boards/prompt cards, personal emergency evacuation plans (PEEPs), support/therapy groups, social care aids and specific older prisoner wings/units.

Eleven out of 77 (14%) of prisons responded that there was a support group (or similar) specifically for individuals with dementia or MCI in their establishment, most often run by prison staff, mental health team or the older prisoner lead. Groups included a dementia friendly music group/choir, gym group, holistic care and support, memory café, over 45s focus group, over 50s wellbeing and mindfulness, cognitive stimulation therapy and arts and crafts.

Social care

Only seven (9%) of prisons reported use of standardised assessment tools for social care needs. Staff indicated that social care needs would normally be identified through initial health screening on reception. Formal identification of social care needs was considered the job of social workers (38; 49%) or healthcare/clinical staff (30; 39%). The development of care planning was most commonly attributed to social care staff (33; 43%) or healthcare staff (12; 16%), but only 13 (17%) prisons said that this was multi-disciplinary involving complex case meetings with prison staff. Almost half of prisons (36; 47%) had advocacy arrangements in place (either internal or external).

All healthcare staff were asked who was responsible for meeting social care needs as defined by the Social Care Act 2014. Seventeen (22%) attributed this to the social care team (17; 22%), followed by healthcare (13; 17%). The prison was seen as having some responsibility in over a quarter of responses, with 15 (19%) suggesting that all three shared this responsibility or that it is the responsibility of ‘everybody’.

Peer supporters

Forty-four (57%) prisons reported that their establishment employed prisoners as peer supporters. Twenty-seven prisons (61%) had formal selection criteria for these roles such as security vetting, risk assessments and enhanced status and most (32; 73%) provided training. In only 16 prisons (36%) was mental health awareness covered in the peer supporter training. Prison staff were involved in training delivery in 18 establishments (41%), healthcare staff in 15 (34%), social workers in 11 (25%) and third sector workers in 10 (23%). Most peer supporters (34/44; 77%) were paid for this role, with much variation in rates of pay between £2 - £16 per week.

Of concern, some healthcare managers reported that their peer supporters were involved in personal care (i.e. 4; 9% helped with washing and only 1; 2% assisted with using the toilet). Most responsibilities were considered practical or emotionally supportive such as carrying plates, pushing wheelchairs, writing letters or keeping them company.

Dementia/MCI training provision

A quarter of prison staff (22; 26%) reported that training (internal or external) was provided in the identification of dementia and/or MCI (see Table 4 for areas covered in training). Staff who received the training were most commonly prison officers and governors (both 18; 82%), in half of the establishment (11;50%) the training was also delivered to Chaplaincy and Education staff and often (10; 45%) prisoners themselves also received the training.

Table 4. Areas covered by current prison staff dementia/MCI training provision.

Training content	Governor questionnaires (% out of 22)	Healthcare frequency (% out of 16)
General awareness	19 (86%)	13 (81%)
Early warning signs	11 (50%)	9 (56%)
Impact on functioning	9 (41%)	7 (44%)
Managing challenging behaviours	9 (41%)	3 (19%)
Local referral processes	7 (32%)	6 (38%)
Local care pathway	6 (27%)	1 (6%)
Detecting and treating anxiety/depression	6 (27%)	1 (6%)
Communication techniques	6 (27%)	7 (44%)
How to offer support/make low-cost adaptations to the living environment	4 (18%)	4 (25%)
Other (one-to-one key worker awareness)	1 (5%)	-

The most common format for training delivery was face-to-face; either in meeting/lectures (13; 60%) or interactive workshops (8; 36%), followed by online training (8; 36%). Specialist external agencies were involved in the provision of training in 13/22 (45%) prisons. The training was most commonly (9; 41%) facilitated by the voluntary sector/charity (e.g. Age UK, Alzheimers’ Society or other local charities), followed by the Local Authority (6; 27%). More than half of prisons who provided training (12; 55%) involved service users, carers or experts by experience (EBE) in the facilitation of the training.

Sixteen (21%) healthcare staff reported that training (internal or external) was provided in the identification of dementia and/or MCI. This training was most commonly received by nurses (13; 81%) and healthcare assistants (12; 75%), followed by nurse practitioners and pharmacists (both six; 38%).

The most common format for training delivery was face-to-face meeting/lectures (8; 50%) followed by online training (7; 44%). Almost half of healthcare services providing training (7; 44%) involved specialist external agencies in the provision of training; most commonly, this was the Local Authority (5; 31%) and voluntary sector (3; 19%).

Only three healthcare services in prisons involved service users, carers or experts by experience in the facilitation of the training and designing of the referral process.

Table 4 provides a breakdown of the areas covered by the prison and healthcare staff training in relation to dementia and MCI.

Discussion

Summary of findings

This study was the first national survey of dementia and MCI provision in prisons in England and Wales. Respondents stated that there were 141 individuals living in prison with a diagnosis of dementia; 12 with a diagnosis of MCI and 45 were waiting for an assessment of dementia/MCI in the prisons that responded to the healthcare managers questionnaire (77, 71%). Only 23 prisons (30%) had routine screening for Dementia/MCI. The majority of prisons reported that they did not have a defined care pathway for prisoners with dementia or MCI (53; 69%). Eleven out of 77 (14%) of prisons responded that there was a support group (or similar) specifically for individuals with dementia or MCI in their establishment. Forty-four (57%) prisons reported that their establishment employed peer supporters. Twenty-seven prisons (61%) had formal selection criteria for these roles such as security vetting, risk assessments and enhanced status and most (32; 73%) provided training. Face-to-face training around dementia awareness was preferred to online or alternative methods.

Screening, assessment, and diagnosis

Previous studies suggest that up to 8% of the older prisoner population (1090 approximately) are experiencing symptoms of Dementia/MCI (S. Fazel, T. O. Hope, et al., 2001; Forsyth et al., 2020). The findings of our questionnaire suggest under reporting and under diagnosis currently. This under diagnosis is not unexpected considering only 30% of the prisons in our sample had established routine screening for dementia/MCI. This is in spite of repeated calls over the last decade for dementia screening to occur as part of a framework of support for individuals experiencing dementia symptoms in prison (Brooke et al., 2020; Du Toit et al., 2019; Moll, 2013; Peacock et al., 2019)

Care pathways

Although, the majority of respondents did not have a defined care pathway for prisoners with suspected dementia/MCI, a third were in the process of developing one. These findings are in line with recent systematic reviews, which have empathised the need for the development and implementation of care pathways to ensure that individuals in prison receive equivalence of care to those living in the community (Brooke et al., 2020; Du Toit et al., 2019; Peacock et al., 2019). We know from our previous work (Forsyth et al., 2020) that older adults often do not have access to Memory Assessment Services who are often unwilling or unable to provide support for those living in prison. The long awaited Ageing Prisoner Strategy, due to be published by the Ministry of Justice in 2023, should provide clarification and impetus for the development of such dementia services to be accessed by those living in prison. However, further details, resources and management will be required to ensure that recommendations in the strategy are operationalised.

Social care

Since the introduction of the Care Act (2014), local authorities have been responsible for the provision and prevention of social care needs in prison (Tucker et al., 2018). However, only 9% of establishments in our sample had a standard social care assessment, suggesting that social care needs were not routinely screened for in prison. This supports previous research which suggests that there is a lack of ‘active case finding’ for social care needs, and the identification of such needs is often based upon ad hoc observations rather than standardised screening (Tucker et al., 2018).

Peer supporters

There is a dearth of literature about peer supporters in prison, however 44 (57%) prisons reported that their establishment employed prisoner supporters. As prison staffing is reducing nationally and the number of older prisoners is increasing (Prison Reform Trust, 2023), more establishments are introducing and expanding peer supporter schemes to current prisoners. There is a Prison Service Instruction to guide such initiatives (NOMS, 2020) but there is a lack of empirical evidence to inform them and ensure the safety of the receivers and providers of care. We are aware that those providing peer support often do not receive sufficient support which can directly impact upon their mental health (Buck et al., 2023). Importantly, the findings revealed that there were examples of peer supporter inappropriately providing personal care (n = 4, 9%). This is a potential safety issue that needs urgent review.

Variability across establishments

Whilst the older prisoner population has notably increased over the last 10 years, there is still much variability in assessment, service provision and education for dementia/MCI across establishments. Often individual members of staff will take an interest in the development of an initiative aligning with their own interests or expertise, resulting in areas of good practice and some sub-populations being underserved. The development of a national strategy would support dementia/MCI initiatives to delivered proportionately and reduce variability.

Strengths and limitations

This was the first national survey on dementia and MCI in prison in England and Wales. Importantly, due to the integrated care required for individuals, we obtained the perspectives of both prison governors and healthcare managers and received good response rates from both (78%, 71%). It would also be beneficial to survey social workers and specialist Memory Assessment Service staff.

Conclusion

The study provides an account of current service provision for individuals living in prison with dementia/MCI across England and Wales and considers future service development. Analysis of the survey data clearly demonstrates largely disproportionate service provision despite a growing older prisoner population, indicating a need for a national dementia care pathway and training framework. This study is of particular clinical relevance, providing an essential insight into the many caveats of dementia care in prison and drawing attention to those areas that are in need of review.

The survey also informed the development of the Dementia and Mild Cognitive Impairment (DECISION) care pathway and training package (Forsyth et al., 2020). Future research should further explore how health and social care provision, along with staff and peer awareness, can be developed to better support those living in prison with suspected dementia/MCI. There is a substantive need for empirical evidence to inform services for this growing population where prison, health and social care services are being drastically cut.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the NIHR [08270].

Notes

1. In this paper, a ‘peer supporter’ is a prisoner role providing help and support to prisoners who have additional needs. This role may be defined differently across prisons. In some prisons, this is a paid role, though the role may also function on a voluntary basis. The role might be arranged by healthcare or by the prison. Peer supporters may help with collecting meal, or reading post and other such tasks, but they do not provide intimate care. This role of peer supporter needs further investigation to ensure it is an appropriate position, and the individuals giving and receiving support are appropriately supported.