Dementia and mild cognitive impairment in prisoners aged over 50 years in England and Wales: a mixed-methods study

Sample

We aimed to recruit 860 prisoners (591 men and 269 women). This sample size was calculated to allow the estimation of a prevalence of 7% (based on Hayes et al. 25) with 2% precision [95% confidence interval (CI) 5% to 9%, applying finite sample corrections for each sex].

Inclusion and exclusion criteria

Consent

The researcher explained the project to the eligible participants and gave them the information sheet as well as explaining their ethics rights (see Report Supplementary Material 1). The researcher read and explained the information in these documents to the eligible participant, showing sensitivity to the high levels of learning difficulties and literacy problems in this population, as well as to their potential MCI. The researcher explained what participation involved, how much time it would take and answered any questions. The researcher also explained that participation was voluntary, that the prisoner was free to withdraw at any point and that their decision to participate, or not, would have no adverse effect on the care that they received or their legal rights. The researcher also discussed the arrangements to ensure confidentiality (and limits of this) and data protection. Limits to confidentiality included information pertaining to:

• behaviour that was against prison rules

• information that suggested either a risk of harm to self or a risk of harm to others

• information that referred to a new crime committed or planned, or undisclosed illegal acts

• behaviour that would be harmful to the individual (e.g. intention to self-harm or to end one’s life)

• information that raised concerns about terrorism, radicalisation or security issues.

Researchers had a duty to inform prison staff of any of the above, in line with our written protocol.

Potential participants were given the option of participating immediately after they were approached. The reason for interviewing people so soon after the initial approach was because of the complex and challenging nature of the prison environment, the difficulties in working around the prisons’ security needs (which take priority at all times) and the very short notice periods involved when moving people around the prison estate. It would have been unlikely that we could have achieved the recruitment targets for the study in the prison environment without such an approach. However, a process consent procedure was followed to ensure that participants had multiple opportunities to consider their involvement in the study and withdraw if they chose, without any negative implications for them. Further details of this process consent method are explained in Individuals lacking capacity. Eligible participants who wanted to have longer to consider their involvement were interviewed within 1 week of their initial approach and were given at least 24 hours to consider whether or not they wanted to participate. The consent form (see Report Supplementary Material 2) was explained to the participant before they signed it, and the researcher signed the form after it had been completed by the participant. A copy of the consent form was offered to the participant and one copy was retained by the researcher. Once informed consent had been obtained, the participant was invited to begin the interview.

Each person who agreed to participate in the interview was allocated a unique participant identification (ID) number and names were not recorded. Dependent on the outcome of the initial screening on the Montreal Cognitive Assessment (MoCA), participants were invited for a further interview. Those who did not want to continue with the study were thanked for their time and their participation in the study ended. For those who consented to a further interview, it was explained that they may be contacted in the next 3 months, but that they were under no obligation to complete the next interview should they change their mind.

The researchers taking consent were aware of the potential for any coercion and how the vulnerabilities of individuals might affect the decision they make. Researchers also received specific training in recognising MCI and working sensitively with individuals affected in this way. The prisoner population has high levels of illiteracy and learning difficulties, and researchers had an awareness of these difficulties when obtaining consent. Researchers ensured that participants could demonstrate a clear understanding of their involvement in the study and their rights within the study (e.g. the right to withdraw) prior to seeking informed consent. Researchers were sufficiently trained and experienced to assess whether or not patients had the capacity to give consent.

Individuals lacking capacity

Researchers received training in assessing capacity, as outlined in the Mental Capacity Act (MCA),47 as follows:

1. Gaining ‘permission to access’ the person with possible dementia from staff, a relative or a named person.

2. Establishing the basis for consent. As capacity is situational and variable, the researcher endeavoured to find out how the person usually consented to care or other activities in day-to-day life.

3. Seeking initial consent for the specific research. Information was provided that was appropriate for that person to help them understand the study. This step included recording non-verbal communication and facial expressions, and referring back to what was already known about how the person usually consented on a daily basis. It was important that the researcher did not rely only on a lack of verbal objection and assumed this to mean consent had been given.

4. Monitoring ongoing consent monitoring in line with the idea of consent as a process. Dewing48 described this stage as ‘ensuring initial consent is revisited and re-established on every occasion or even within the same occasion’. 48

5. Providing feedback and support. This included feeding back to staff any concerns the researcher might have had about the participant.

Researchers also sought an opinion from prison health-care staff regarding capacity. If the person lacked capacity, an attempt was made to identify a ‘personal consultee’, as defined by the MCA,47 to advise on the individual’s participation. In the first instance, even when participants were considered to lack the capacity to consent to participation, researchers asked if they could contact someone else to advise on the individual’s behalf. Potential consultees from outside the prison were contacted only if the research team had established that they were aware that the potential participant was in prison and that they had difficulties that limited their capacity to consent. The initial approach to anyone outside the prison was made by prison health-care staff.

Personal consultees were provided with study information (see Report Supplementary Material 3) and their role and the reason for them being approached was explained by researchers. If the participant was unable to nominate anyone or give consent to contact someone outside the prison, researchers identified an appropriate independent consultee (again, in line with the MCA47). This was usually a clinician or health-care worker from within the prison. No pressure was placed on any individual to act as a consultee and researchers fully briefed consultees regarding the study, to enable them to offer advice on the potential participant’s behalf. If a consultee or nominee advised that the individual would not want to take part, they were not be recruited.

Researchers also discussed the study with the person themselves, in a way that was appropriate to their level of understanding. If there was any indication that the individual did not want to participate in any part of the study then the individual did not take part, even if their participation has been advised by another person on their behalf. When this occurred, researchers informed the individual’s consultee that the individual was not taking part, despite their advice, and explained the reasons for this. There was clear potential for the research to benefit individuals with MCI and the study methods (interviews and observations) posed minimal risk to participants. All data collection was completed with sensitivity and respect for the autonomy and privacy of each participant.

The following safeguards were applied once an individual had been recruited in this way:

• No actions were taken during any part of the study if the participant seemed to object to it (unless the action was vital to protect the individual from harm).

• Researchers considered the interests of the participant above all else throughout the study.

• The participant was withdrawn if any conditions pertaining to his or her inclusion in the project no longer applied and/or if he or she gave any indication that they did not want to continue or take part.

The consent form (see Report Supplementary Material 2 and 4) for all individuals included an option to indicate a preference ‘for’ or ‘against’ continued participation, should the individual lose the capacity to consent during the study.

Sampling procedure

The sample was drawn randomly from all women’s prisons and a representative range of adult men’s prisons across England and Wales, including local prisons holding those on remand, those serving short sentences and those in the early part of long sentences; training and dispersal prisons holding men part-way through long sentences; high-secure establishments holding those considered to be high risk; and open prisons holding short-term prisoners deemed low risk and those in the final stages of long sentences who are preparing for community release.

We selected sites based on the proportion of each prison type in the prison estate as a whole: one of the eight high-secure sites; 3 of the 31 local sites; 5 of the 51 category B or C training and dispersal prisons, and one of the seven category D or open prisons [as defined in the Justice prison index URL: www.justice.gov.uk/contacts/prison-finder (accessed 9 May 2016)]. We also included a prison that had a specific wing for older and disabled prisoners. This is one of only two prisons in the country with a dedicated wing for prisoners based on their age and health needs.

We estimated that we would need to initially approach approximately 415 female prisoners and 896 male prisoners to allow for 20% of prisoners refusing to participate and a further 14% of prisoners who might have been unavailable on the day, unable to consent or already interviewed for the study in a previous establishment. (These estimates were based on the Hayes et al. study,25 in which researchers conducted a 1-day census of all prisons in the north-west of England and interviewed all men aged ≥ 60 years resident in each establishment.)

The total number of prisoners aged ≥ 50 years in the recruiting prisons was established and these figures were used to calculate a sampling fraction, which informed the proportion of prisoners we approached at each site. We stratified our sample according to age, an important variable when investigating MCI, as prevalence doubles with every increase of 5 years. 49

To stratify by age, we collected an age breakdown of the prisoners present in the establishment on census day for each of the sites. The latest Dementia UK: Update1 stipulated that those aged 60–69 years had two to three times the prevalence of those aged 50–59 years. Additionally, those aged ≥ 70 years had three to five times the prevalence of the youngest group. We therefore obtained the number of prisoners aged 50–59, 60–69, 70–79 and ≥ 80 years at each site on a given census day. Within each site, we sampled 30% of those aged 50–59 years, 60% of those aged 60–69 years, 90% of those aged 70–79 years and all prisoners aged ≥ 80 years. The procedure is described as follows.

Recruitment

We utilised a 1-day census approach, specifying a census date per site. (It would not have been feasible to have only 1 census day for all sites, as it took considerable time to collect data at each site, and a long delay between the census date and data collection would inevitably have resulted in increased attrition, especially at local prisons with transient, remand populations.)

A research nurse or another appropriate staff member in each prison acted as a single point of contact (SPOC) for the research team. This was a different role across study sites (such as a clinical studies officer, researcher or research facilitator), but to avoid the potential for coercion during recruitment we ensured that the individual was not in a directly caring role for prisoners and not a member of our research team. The research team provided the SPOC at each site with a census date and the SPOC then identified potential participants who fulfilled the inclusion criteria. The SPOC did this by running a search on all prisoners in their establishment on the prison computer system (Computer-National Offender Management Information System) or health-care system [SystmOne; The Phoenix Partnership (Leeds) Ltd, Leeds, UK]. Once a numbered list of all potential participants had been generated, the SPOC informed researchers of the number of eligible older prisoners identified. A member of the university-based research team then used a random number generator to identify the numbers of those randomly selected for potential participation. We communicated these to the SPOC (e.g. numbers 1, 3, 6, 7, 9 . . ., etc., on this list). The SPOC then conducted checks using the internal prison data systems to ensure that the individual met the inclusion criteria and that it was appropriate for them to be seen. They considered if the potential prisoner’s current risk assessment indicated whether or not they were safe to be seen. This was done by reviewing the records and discussing with health-care staff, as appropriate. They had a protocol that they used to determine appropriateness in a uniform way.

The SPOC then sent an information and appointment slip to each of the individuals who had been randomly selected and were both eligible and appropriate to be seen. The slip briefly outlined the study and invited each individual to a one-to-one interview with a researcher. The slip explicitly stated that, by attending their designated appointment, individuals would be meeting with a member of the research team to further discuss the potential for participation. Details of who to approach for further information or advice regarding the study, within the prison and prior to the appointment time, was also included. This procedure was considered more realistic and feasible than someone in the prison going to see each potential participant and asking for their consent to pass details on to the research team. There were in excess of 100 eligible participants at some establishments and, given the impact of austerity measures across the prison estate, requiring a member of staff to do this amount of work was considered unfeasible.

Interviews were held in health-care clinic rooms, in visits or in wing interview rooms, depending on the availability of rooms, procedures and governor preferences in each prison. At their appointment time, eligible participants met a researcher who provided them with, initially, verbal information and then, if they were willing, written information about the study and an opportunity for further discussion. During the briefing process, participants were made aware that if they chose to take part in the study, their data would be made available to other researchers, but that this would be in an anonymised format.

Following the procedure for obtaining consent, if an individual consented to take part, the researcher conducted an initial interview (see Report Supplementary Material 5), which included the collection of demographic data and completion of the MoCA. A proportion of the sample also completed the 6-CIT for validation purposes.

Researchers obtained the prison ID number of all who attended an appointment, regardless of whether or not they had consented to participate in the study. This list was then passed to the SPOC, who matched it against the list of those invited to appointments to identify anyone who failed to attend. If any individuals identified in the initial random sample failed to attend, the SPOC attempted to make contact with them to establish whether or not the reason for their failure to attend was related to an inability to comprehend the written information provided. This was an important step in ensuring that the sample was not biased by the indirect exclusion of those with a MCI or literacy problems. The SPOC took great care to avoid coercing individuals into taking part or making individuals feel that they had to account for their decision not to attend. Instead, they made it clear that the purpose of making contact was to check if any individuals wanted to attend but were unable to, in which case-appropriate arrangements and additional support was put in place to facilitate a meeting with the research team. At some sites, multiple census day random samples were generated until the target number was achieved.

Individuals who scored positive on the MoCA proceeded to a further needs assessment interview (see Report Supplementary Material 6). The interview took place immediately after the part 1 interview or, in some cases was delayed by a short time, depending on the operational arrangements at the study site and the individual’s preference or needs. A further, fairly lengthy interview may have been difficult and distressing for individuals with MCI, so researchers considered the needs and wishes of each participant prior to continuing with the second interview. If it was operationally viable and the individual was able and willing to continue with a full needs assessment, then both interviews were conducted at the same appointment. If this was not the case, the researcher arranged a new appointment via the research nurse and returned to complete the full needs assessment at a later stage.

Interviews and consent procedures followed the same format for the second interview as described above for the MoCA. Researchers first obtained additional, more detailed demographic information. Information on current physical and mental health, as well as any diagnosis of learning difficulties or disabilities, sensory difficulties and/or use of substances or medication, was gathered on a pro forma designed for the study. This information enabled us to gauge the presence of other factors known to have an impact on cognitive test scores (e.g. pain, strong medication, poor hearing or eyesight, learning issues, mood disorders). Information on this was supplemented by the use of information gathered from SystmOne. Researchers interviewed participants using a range of standardised assessments to assess the degree and type of their impairment, their activities of daily living (ADL) needs, their mental health needs, any brain injury, and their social networks.

Subject to each individual’s informed consent, risk and follow-up data were also collected at this stage. Information pertaining to risks of self-harm and reoffending was sought from the Offender Management Unit. The NHS number, name and date of birth of each participant was also obtained and recorded to allow for the long-term follow-up of key health and criminal justice outcomes at a later date (in a further potential study). Consent was sought from the participant (or advice was sought from the consultee; see Individuals lacking capacity) for researchers to access the individual’s electronic prison health-care record. Health-care records were screened for any indication of diagnosed MCI or dementia.

Follow-up

To enable us to examine the longer-term health and criminal justice outcomes of those who screened positively at a later date, and with further funding, we sought permission from participants to collect their NHS numbers as well as their full names and dates of birth.

If consent was granted, researchers obtained this information from a health-care administrator who already had access to this information, and data were shared via secure e-mail (gov.gsi.uk and nhs.net). Participants were allocated a unique study ID, so, once NHS numbers were received by the research team, these were held with other identifiable information (name, prison ID number) in a separate and secure location from the identifier key and other study data, including test responses.

Participants were able to opt out of allowing access to their data for follow-up and/or allowing access to their risk data as generated by the Offender Management Unit to maintain individual choice and avoid any potential adverse effect on recruitment. Participants were therefore given the option to continue to participate in the study as a whole, even if they opted out of allowing researchers to access their risk information or follow-up data.

No risk or follow-up information was sought in relation to participants deemed to lack the capacity to provide informed consent, as it would not have been appropriate for a personal or an independent consultee to grant researchers access to risk or follow-up data on another’s behalf.

Measures

All participants were invited to complete the MoCA. 50

Data analysis

The prevalence estimates were directly age standardised using the age distribution of the national prison population as the reference. From age 50 years and older the following age strata were applied: 50–59, 60–69 and ≥ 70 years. Each stratum-specific weight was calculated as the proportion of the whole prison population that was in that age group, divided by the equivalent proportion for the study sample. The numerator was then calculated the adjusted by taking the product of the weight and the study sample size within each age stratum.

We produced age-specific prevalence estimates to allow comparison with community-based samples (e.g. Matthews et al. 65).

The battery of tests established the broader needs of each older prisoner, including social support, ADL skills, comorbidity and risk. Descriptive statistics were produced. This information informed the case vignettes that were generated in part 4 of the study (see Chapter 5).

In addition, we measured the agreement between categories of the MoCA and 6-CIT using kappa. 66–68 We also examined the relationship between the items and combinations of items on the scales and, with these ordered data, we used weighted kappa as the measure of agreement. 69,70 This approach allowed us to establish whether or not the 6-CIT has suitable psychometric properties to be used as a routine screen in prisons. We estimated the prevalence of MCI by calculating percentages and 95% CIs using the 6-CIT, so that we could compare these with prevalence estimates based on the MoCA.

We aimed to generate a matrix of future prevalence estimates according to various hypothetical projected scenarios of overall prison population growth and of rising numbers of older prisoners in both absolute and proportional terms. Unfortunately, data were not available to enable prediction of future numbers of older prisoners and therefore this task could not be completed. The increase in numbers of older prisoners over recent years has mainly been due to recent sentencing for historical crimes largely as a result of better forensic science procedures (e.g. DNA testing). The population of prisoners aged ≥ 50 years is projected to increase, both in absolute terms and as a proportion of the total prison population. This is because the number of offenders aged ≥ 50 years being sentenced to custody is currently greater than the number being released. 70 However, the extent to which the increase in sentencing of people for historical crimes will continue is largely unknown and therefore it is difficult to predict if this will increase, decrease or stay the same. Furthermore, this growth is offset by a declining imprisoned for public protection/lifer population, who constitute a higher proportion of offenders aged ≥ 50 years. The 50–59 years group is predicted not to grow between now and 2023. 71

Cumulative percentages were calculated throughout this report.

Prevalence

We recruited 869 prisoners (596 male and 273 female). Participant recruitment is detailed in Figure 1.

FIGURE 1.

Part 1 participant details for prevalence study.

As shown in Figure 1, 100 participants screened positively on the MoCA (12%). Seventy (8%) of the total sample screened positively on the ACE-III. This included 11 individuals who screened positively for possible MCI (1% of the total sample) and 59 individuals who screened positively for dementia (7% of the total sample).

Table 1 shows the estimated prevalence of dementia and MCI among our sample of older prisoners. Across the whole sample, the prevalence was 8.1% (95% CI 6.4% to 10.1%). When this was stratified by age, the highest proportion was found among prisoners aged ≥ 70 years (16.9%, 95% CI 12.1% to 23.1%). Participants aged 50–59 years had the second highest estimated prevalence (6.4%, 95% CI 4.3% to 9.2%), followed by prisoners aged 60–69 years (4.0%, 95% CI 2.1% to 7.5%).

We estimated a prevalence of 6.8% for dementia (95% CI 5.3% to 8.7%) and 1.3% for MCI (95% CI 0.7% to 2.3%). The total weighted estimate for dementia and MCI combined is 8.1% (95% CI 6.4% to 10.1%) (Table 2).

Table 3 shows estimated prevalence of dementia and MCI among the older prisoner population weighted by sex and age. There are currently 13,620 prisoners aged ≥ 50 years in England and Wales. 9 It is estimated that 8% of these prisoners have MCI or dementia. This equates to an estimated 1090 older prisoners with MCI or dementia in England and Wales. It should be noted that these findings are based on validated cognitive impairment assessments and not on a clinical diagnosis.

Only two individuals (3%) who screened positively on the ACE-III had a diagnosis of dementia recorded in their prison health-care notes, suggesting current under-recognition.

There were no individuals in our sample who were female, aged 60–69 years and screened positively for symptoms of dementia or MCI on the MoCA. A smaller number of men aged 60–69 years screened positively than (men aged 50–59 years).

Table 4 shows that the prevalence of MCI weighted by age is 0.8%.

Table 5 shows that the prevalence of dementia weighted by age is 6.3%.

Comparison with the community

We aimed to compare the prevalence rates of dementia and MCI among the older prisoner population with those that exist for the wider community. Data were not available for individuals aged 50–59 years living in the community. Community prevalence estimates are broken into 5-year age brackets; however, we used 10-year age groups. It is estimated that 0.9% of individuals aged 60–64 years and 1.7% of individuals aged 65–69 years living in the community have dementia. 1 The prevalence rate among our sample of older prisoners (4%) is approximately two times higher for individuals aged 60–69 years than it is for those living in the community.

The prevalence of dementia for individuals living in the community varies greatly for individuals aged ≥ 70 years. For example, among those aged 70–74 years the estimated prevalence is 3% and among those aged ≥ 95 years the estimated prevalence is 41.1%. The median age of individuals aged ≥ 70 years in our sample of older prisoners was 73 years. Therefore, it is logical to compare the estimated prevalence of individuals aged 70–74 years (3%) in the community with our estimated prevalence of those aged ≥ 70 years (12%). Consequently, we can estimate that prisoners aged ≥ 70 years are approximately four times more likely to have a diagnosis of dementia than their age-matched counterparts living in the community. However, it should be highlighted that our evidence is based on cognitive assessments and not on a clinical diagnosis.

Measures

Data analysis

Data were analysed using Statistical Product and Service Solutions (SPSS) for Windows, version 22 (IBM SPSS Statistics, Armonk, NY, USA). Free-text responses were analysed thematically. 74

Establishments

We collected data from 85 prison governors (78%) and 77 health-care managers (71%). There were four (3%) prisons from which we received no data (i.e. from neither the governor nor the health-care manager questionnaire).

Questionnaires were completed between August 2017 and June 2019. Table 14 shows a breakdown of establishments that responded by predominant prison function. Eleven (13%) were privately contracted prisons and 48 (62%) had either partially or fully privately managed health care.

Non-responder prisons were privately contracted in four (17%) cases and had partially or fully privately managed health care in 16 (50%) cases.

Prison and health-care staff were asked for their definition of an ‘older prisoner’ (Table 15). Sixty-four per cent of prison staff and 56% of health-care staff defined a ‘older prisoner’ as a prisoner aged ≥ 50 years. This fits with the definition in the literature. 8

For the remaining questions, ‘older prisoners’ were defined as those aged ≥ 50 years.

We asked health-care staff to estimate the number of people in their establishments with a confirmed diagnosis of dementia and/or MCI and the number of those awaiting assessment. Table 16 provides a breakdown of how many older prisoners were reported to have each diagnosis across all prisons.

Most prisons reported that they had at least one identified older prison lead [n = 67 prisons (79%); 81 leads in total]. Most of these were at a governor grade (n = 42, 52%), followed by custodial managers (n = 18, 22%) and prison officers (n = 16, 20%).

Within health care, 45 of 77 (59%) prisons reported having an identified older prisoner lead (59 leads in total). Most commonly, these were nurses (n = 35, 59%), followed by health-care assistants (n = 11, 19%).

Activities that fell under the responsibility of the health-care older prisoner lead included producing individual care plans, conducting screening assessments for care needs, liaising with community providers, disseminating good working practices and well-being checks.

Current service provision

Health-care staff reported that prisoners with dementia or MCI were most commonly identified during a health consultation for another issue (n = 64, 83%) and/or through screening on reception (n = 62, 81%). Six prisoners (8%) were identified through screening on discharge from prison.

Routine dementia screening for all older prisoners on reception was conducted at 23 of 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. Of these, most would reassess every 7–12 months (n = 9, 60%), three (20%) would reassess every 0–6 months, one (7%) would reassess every 13–18 months and the remainder would reassess on an individual basis. Routine screening prior to release as part of resettlement was conducted at only eight (10%) establishments.

Table 17 provides a breakdown of the screening tools used across the establishments (some establishments use more than one).

Around half of prisons surveyed [46 (54%) governor questionnaires and 36 (47%) health-care questionnaires] described additional support or modifications to the prison environment that had been provided or developed specifically for prisoners with dementia or MCI.

Both health-care and prison staff were asked about all modifications, and there were some interesting discrepancies in their responses. For example, 87% of prison staff reported the use of prisoner carers, compared with 67% of health-care staff. Conversely, 59% of prison staff reported the use of regular health screening, compared with 72% of health-care staff. Table 18 provides a breakdown of types of modification taken from governor or health-care questionnaires. The sources of these data are given in Report Supplementary Material 7 and 8. The choice of source was made in relation to which would likely generate the most accurate information (e.g. information of health screening from the health-care questionnaire, information on exercise from the prison staff questionnaire).

Other modifications included alarm call bracelets and personal alarms, magnifying screens, long-handled equipment, memory boards and prompt cards, personal emergency evacuation plans, support and therapy groups, social care aids and specific older prisoner wings or units.

Eleven out of 77 (14%) of the prisons responded that there was a support group (or similar) specifically for individuals with dementia or MCI, most often run by prison staff, mental health teams or the older prisoner lead. Groups included a dementia-friendly music group or choir, gym groups, holistic care and support, memory cafes, an over ‘45s’ focus group, over 50s well-being and mindfulness, cognitive stimulation therapy, and arts and crafts.

More than half of the prisons (n = 44, 57%) reported that they had a clear referral process for more detailed assessment of older prisoners with suspected dementia or MCI, and 29 (38%) prisons reported that external health and social care services provided this assessment or treatment.

The majority of prisons reported that they did not have a defined care pathway for prisoners with dementia or MCI (n = 53, 69%); however, just under one-third of these (16/53, 30%) were in the process of developing one.

Care planning between health-care and prison staff occurred to varying degrees in 53 (69%) establishments. This was, on the whole, fairly rudimentary and involved attending care planning meetings (77%), employing prisoner carers (49%) and sharing guidelines and resources.

Social care

Health-care staff were asked about how social care needs were identified, assessed and met in their establishment. Very few prisons used standardised assessment tools for social care needs (n = 7, 9%). Staff indicated that needs would normally be identified through initial health screening on reception. Most respondents indicated that anyone could make the referral for assessment, but it was most commonly made by reception and induction staff.

The formal identification of social care needs most commonly fell to health-care and other clinical staff (n = 30, 39%) or social workers, including both prison-based social workers and local authority staff (n = 38, 49%).

The development of care planning was mostly attributed to social care staff (n = 33, 43%) or health-care staff (n = 12, 16%), with a clear link that in many cases this was multidisciplinary and involved complex case meetings with prison and safer custody staff (n = 13, 17%). In several cases, there was evidence that dementia and older prisoner leads took responsibility for this joint working (n = 4, 5%).

Almost half of health-care staff stated that they had advocacy arrangements in place for those with social care needs (n = 36, 47%). Some were internal to the prison, but others used local advocacy services, including from the local authority.

All health-care staff were asked who was responsible for meeting social care needs, as defined in the Social Care Act 2014. 75 The highest proportion attributed this responsibility to the social care team (n = 17, 22%), followed by health care (n = 13, 17%) and joint responsibility between health care and social care (n = 10, 13%). The prison was seen as having some responsibility by over one-quarter of respondents, with many (n = 15, 19%) suggesting that all three shared this responsibility or that it was down to ‘everybody’.

Both health-care staff and prison staff were asked about how well the local authority was meeting its responsibilities as outlined in the Social Care Act 2014. 75 Responses to this are detailed in Table 19.

Ongoing issues with Social Care Act 2014 compliance

We analysed free-text comments from staff regarding their views on specific issues with their local authority and/or compliance with the Social Care Act 2014.

Staff indicated that one of the most common problems was delays in arranging assessments, diagnosis and/or the provision of care. Staff expressed frustration when prisoners did not meet the criteria for social care under the Act, with a suggestion from one that the threshold should be lower for individuals in prison.

In high-security prisons, security vetting issues resulted in limited or delayed establishment access for external staff. The high turnover of local authority staff caused further delays and inconsistency. It was felt that in some local authorities there was poor understanding of the complexities of working in a prison or with prisoners. In addition, in some establishments there seemed to be misunderstanding about the remit of the local authority and the prison and who was responsible for what.

A number of challenges were noted in practically addressing social care needs of prisoners with dementia or MCI. The environment was most commonly cited, in that the layout of many prisons and cells made any reasonable adaptations difficult to fulfil. Similarly, basic limitations of the prison regime, such as being locked up at night, led to problems with prisoners who may be disorientated and confused.

Problems identifying the signs and symptoms of dementia and MCI was another commonly reported issue; this was related to limited staff knowledge on the issue, lack of training and, particularly in local prisons, the high turnover of prisoners:

The only problems are the lack of understanding of the complexities of working in a very busy Cat [category] B local prison with a high turnover of short duration stays (6-week average). The expectations that they have are unnaturally high and are very difficult to meet.

Governor questionnaire

For prisoners with confirmed dementia and social care needs, out-of-hours provision was another concern. Staff indicated that prisoners’ needs persist throughout the night, but additional care support is frequently unavailable.

Some prisons emphasised the additional difficulties with the ageing prison population, particularly those convicted of sex offences:

Currently, nationally, there is no provision for any prisoner to access residential or nursing care needs within a prison setting. We can only offer a maximum of four social care visits per day. If someone requires more care than this, we cannot provide it. The current law states that we cannot release sex offenders on temporary licence should this be a suitable option.

Governor questionnaire

Many prisons, however, highlighted examples of good practice. One health-care team noted the benefit of the provision of a full-time social worker based at the prison, rather than based externally. The benefits included quicker assessments and the improved opportunity for joint working between the prison, health-care and social care staff. Several teams described excellent working relationships with the social care team from the local authority, whereas another commended regular engagement through meetings:

We have a very supportive relationship with the local authority; we have a monthly social care meeting, a weekly bed management meeting which they attend.

Many of the prison staff who responded had no issues with the local authority in meeting social care needs and reported very good partnerships, with one prison reporting that their local social care team had been ‘Fantastic in supporting residents and guiding staff . . .’ (governor questionnaire), whereas another said that their local social care lead was ‘. . . visible, approachable, realistic and supports the prison’ (governor questionnaire).

Prisoner carers

Forty-four out of 77 (57%) prisons reported that their establishment employed prisoner carers. The appointment of these prisoner carers mainly occurred following staff recommendation or self-referral or through an existing buddy or peer-mentor system. Twenty-seven prisons (61%) had formal selection criteria for this role, such as security vetting, training, risk assessments and enhanced status.

Training was provided in three-quarters (32/44, 73%) of establishments where prisoner carers were employed. Table 20 provides a breakdown of the areas covered in training.

Prison staff were involved in training delivery in 18 establishments (41%), health-care staff were involved in training delivery in 15 establishments (34%), social workers were involved in training delivery in 11 establishments (25%) and third-sector workers were involved in training delivery in 10 establishments (23%).

The range of reported responsibilities of prisoner carers are provided in Table 21. Most prisoner carers (34/44, 77%) were paid for this role, with wide variation in rates of pay (between £2 and £16 per week).

Current training provision

Focused ethnography

Semistructured interviews

Theme 1: the challenge of an ageing prison population

With the ever-aging population coming through the prison gates, I think it is a new presentation that a lot of staff aren’t used to.

Social worker, prison C

A number of the professional respondents noted how much the age demographic of the prison population had changed since they had started working in the prison. Staff working in prison A noted that nearly half of their prisoners were now aged ≥ 50 years, a situation that they would have regarded as inconceivable perhaps 10–15 years ago. Although we were asking questions specifically around dementia and MCI, staff and prisoners alike expressed concerns around the full range of chronic health conditions that are commonplace in this ageing population.

Officers spoke of how the ageing demographic had an impact on the duties that they were routinely undertaking, which may not have been the case previously:

We sit and help do everything, from social workers to a shoulder to cry on, to counsellors; we do everything. I mean . . . there’s even talk that somebody has got some of the prisoners help to brush their teeth, have a shave.

Prison officer, prison A

A number of staff members, particularly prison officers and governors, noted how prisoners who were ageing and potentially cognitively impaired provided them with a fundamental challenge to how they dealt with behaviour, which in ‘normal’ circumstances with younger prisoners would routinely be viewed as refractory:

It’s not so much rolling round the floor with them nowadays, it’s looking to see what’s wrong with them and to see what we can do that’ll help them. If we’re not going to help them, they’re going to be more distressed and that distress . . . it’s just going to make them worse, and then it’s going to look like they are being destructive.

Prison officer, prison A

This difference in approach was echoed in other establishments:

. . . instead of using force straight away, it’s more of talking to them, explaining what’s happening, we’re going to have to put hands on, we’re just going to have to guide and hold you back. And they kind of realise then, right, this is what’s happening, they’ll calm down.

Prison officer, prison C

Another officer appeared to question some basic principles of their role around the management of this group:

I always felt that a prisoner with dementia should be treated differently. Because if a (young) prisoner is violent they know what they’re doing, but someone with dementia doesn’t . . . how do we discipline prisoners who don’t actually know what they’re doing? But they are a prisoner in prison subject to prison rules and regulations like everyone else.

Prison officer, prison D

A prisoner raised an even more fundamental issue: whether or not there was a need for those who had been convicted of historical offences and posed no risk to the community to be imprisoned:

I think the criminal justice system is a bit wrong with people with dementia. They can’t fully remember everything that’s happened . . . they just tend to feel, well, yeah, he’s guilty and that’s it, whether you are or not . . . Older people with a historical offence that haven’t been in trouble since . . . should be allowed to maybe be tagged.

Resident, prison A

Both staff and prisoners commented on the unsuitability of the physical environment in many establishments for coping with less mobile residents. Staff in one prison noted that the possibilities for changes to the environment were limited because of the prison’s age and listed building status. Others noted limitations that were perhaps more easily addressed. For example, in one prison, all accommodation for vulnerable prisoners (including many elderly men, owing to the nature of their offences) was located at least two floors up.

On more than one occasion senior staff noted that their ability to effect change locally was limited by resources, which had reduced significantly over the period of public sector austerity introduced nearly 10 years before. The view was expressed that local initiatives were bound to be limited in their impact until there was recognition from central government of the size of the problem:

There needs to be an awareness at the centre, at headquarters that, first of all, we’ve got to identify the numbers, haven’t we . . . It needs to come at a Ministerial level . . . because that’s where the money comes from ultimately, doesn’t it?

Governor grade, prison D

One prisoner offered a straightforward response to the issue of resource availability for older prisoners:

The senior support group. Sometimes you have to split them up because there’s not enough room for them all. Well, make room. If the prison’s catering for the older population, increase the space so the community grows.

Peer of elderly resident, prison A

The same prisoner maintained this pragmatic approach to the ‘problem’ of accommodating people in prison throughout the conversation, which was informed by time spent in other prisons:

If they’ve got a problem with the bunk beds, put two single beds in there. They do that at [name of prison].

Peer of elderly resident, prison A

A number of respondents spoke of the fragility of some local initiatives. For example, one prison officer spoke of an approach championed by a former member of staff:

Our old senior officer did start . . . a little quiet corner and on an afternoon. She used to get them out and give them board games, for them all to come out.

Prison officer, prison C

The officer said that the idea of the quiet corner had waned, attributing this to older residents losing interest in the initiative. However, a peer carer on the same wing offered a different reason for its demise:

When [name of senior officer] was on, she started getting the . . . older lads out, but that seems to have gone now she’s moved to another wing. So, things change with new officers and what have you.

Peer carer, prison C

The same prison officer also wondered whether or not, because they were working in a local prison, their ability to respond to the needs of elderly prisoners properly was impeded by having to serve a large and transient population. The pressure to serve the courts and deal with short-term prisoners seemed to overtake the prison’s ability to plan and provide for those with dementia:

There’s nothing that’s been put in place. I don’t think it’s been identified properly . . . when they go to another jail, I’m not sure if they have more of an input into it, but I think being a local, they haven’t implemented anything.

Prison officer, prison C

A governor in another prison noted that the process of benchmarking had served to remove staff’s ability to do the ‘nice to do’ tasks, leaving resources only for essential tasks to be undertaken.

Members of health-care teams shared that they were unsure how comprehensively they were identifying those at risk of dementia, as their current systems had been designed with a younger demographic in mind:

We do a reception screen on everybody that comes through . . . is it robust enough to actually pick up people with dementia . . . I don’t know whether that’s been tested . . . it would be useful for me to know that our reception processes are picking people up and their needs are being met.

Health-care manager, prison E

The enormity of the task faced by health-care departments in meeting the needs of elderly prisoners was commented on by a number of interviewees, who had the shared view that resources were too scarce and were negatively affected by regular changes in health-care providers, and that there were ongoing problems with recruiting and retaining staff:

They’re putting a sticking plaster on a dam. They have too little GPs. When you look at how many men we’ve got here and what complex needs we have the team we have is far too small, it’s quite transitory . . . staff come in, we’re going to conquer the world, we’ll get this sorted, within 3 weeks they’re gone.

Third-sector worker, prison D

One senior manager succinctly summed up how prisons were struggling to provide a holistic service for older prisoners and those with dementia:

These prisoners . . . if they were out in the community they would be in residential care setting with lots and lots of support and day centres and, you know, the stuff that helps people, whereas in prison we’re not able to do that.

Governor grade, prison D

Theme 2: what is it like to be old in prison?

The different moods, the way they’ve changed over the year, the way they do things differently to other people; how some of them just look lost, and they walk round the landings literally lost, like a ghost almost.

Prison officer, prison A

The previous theme explored how prisons and prison staff are now required to cope with an increasing number of older prisoners, which has resulted in a population with complex medical needs compounded by dementia and MCI. We noted above how this had led a number of staff to question their professional role, as tasks they would previously not have thought twice about (e.g. restraining or disciplining prisoners displaying refractory behaviour) now seemed wholly inappropriate for this group.

That said, the role of front-line officers was noted as very important in influencing how well older prisoners were able to live in prison. Good staff were described as caring, with personal knowledge of people living on their unit and able to use this familiarity to highlight, particularly to health-care staff, changes in a person’s well-being and any deterioration in their health and/or functioning. Prisoners interviewed often named particular officers as being concerned for their welfare and, importantly, trustworthy. Several examples were given of when staff had developed local initiatives for particular difficulties that prisoners were experiencing. For example, at prison A, a resident told us of a reminder board that an officer had developed for him, which allowed him to tick off everyday tasks as they were completed on a daily basis.

At a prison-wide level, the senior prison manager interviewed at prison A, where those aged ≥ 50 years accounted for nearly half of the prison population, spoke about his vision of the prison community being positively influenced by adopting an approach of ‘active citizenship’. The overarching aim of this was for staff and residents to be jointly responsible for developing the prison as a community, with shared goals and ideals, rather than living and working in a ‘them and us’ environment.

Residents, and some staff, highlighted the issues that arose as they tried to negotiate the many rules, both formal and informal, that influence life in prison on a day-to-day basis. Although prisons across England collectively share the same overarching purpose, establishment-specific customs and practice require prisoners to learn and adapt as they move around the estate. This can influence even the most basic elements of daily life. For example, a resident in prison A noted that, at a previous jail, he had been able to simply ask for a more comfortable chair for his cell and ‘you would get it and there was no problem at all’, whereas in his current prison ‘it is hard to get a chair in your cell . . . you’re only allowed a stool, but you’re allowed to have a cushion to put it on’. Although he had not yet received a comfortable chair, he did note that the cell he was currently in was quite well equipped with a range of mobility aids, for example grab-rails for the toilet, although at present he had no need for them. The same person also noted that in prison A he feared slipping on the floors, which were always kept well mopped and polished, whereas in a previous establishment cleanliness was not of the same standard and thus he had no such concern. Similarly, one respondent with suspected dementia described falling foul of staff expectations:

I’m a bit slow. But I get there but some younger officer[s] shout, come on, hurry up, we haven’t got all day. And I think . . . I’m going as fast as I can here.

Elderly resident, prison A

Another resident noted the need to adhere to the regime, including the timing of activities:

We all have blips don’t we, but in here if you’re not at a certain place at a certain time, you miss the boat anyway.

Elderly resident, prison C

Concern was expressed that older prisoners, potentially vulnerable due to dementia, could be preyed on or exploited by younger prisoners. One prisoner shared his experiences of this:

These tough nuts as I called them in here, they’d pick on you more ‘cause they knew you couldn’t really stick up for yourself much. And you’d tend to give in . . . You just go into your own little shell a bit then. It’s terrible.

Resident, prison A

Another prisoner told us:

I’m scared . . . because sometimes people will hit me and I’ll fall over.

Resident, prison D

In another prison, having a very mixed population on vulnerable prisoner wings was highlighted as contributing to the issue:

We get young fellas who are from other wings, because they’re getting bullied on other wings, who think they’re big boys, which they’re not. But they can intimidate the older guys . . . if someone says, have you got a vape in this place, next minute you’ve got them at your door every 2 minutes.

Peer carer, prison C

This carer felt that the answer lay, at least partly, in having discrete accommodation for older prisoners:

This prison itself is not made to look after these guys, they need to be in a place, there’s too many young guys running around, and they get . . . intimidate[ed]. [Even] if they go to the health care . . . they’re intimidated by the mains because they’re VPs [vulnerable prisoners].

Peer carer, prison C

However, this issue is not straightforward. One younger man spoke of the benefits he had experienced from sharing with an older person:

. . . this is the first time I’ve ever been with somebody not my own age . . . I always find that when I’m in with somebody my age I end up getting into trouble so it’s not a bad thing me being with somebody a bit older . . . I’m staying out of trouble.

Cellmate of elderly resident, prison A

Similarly, the idea of older prisoners being ‘protected’ by younger peers was brought up in a number of interviews:

If anyone’s being funny with him [older prisoner] . . . I’ll say . . . just make sure you’re looking after my dad, yeah. And he chirps up a bit then, see. It’s like a boost, a confidence boost.

Peer of elderly resident, prison A

What was clear throughout the interviews was that the vast majority of staff regarded elderly prisoners as different from, rather than simply older versions of, younger prisoners:

You just can’t treat an older person the same as a 20-year-old. Completely different, [a] 20-year-old can be self-sufficient, get on . . . if they haven’t got pillows they’ll pinch it from someone else or they’ll go to officers and they’ll ask for some. A lot of our guys if they haven’t got a pillow, they’ll just make do with what they’ve got because they haven’t got the capacity or the confidence or the ability to go to the officers and say this is my problem.

Third-sector worker, prison D

Peer carers are widely used across the prison estate. There are guidelines for the roles and responsibilities of peer carers; for example, they cannot undertake personal care tasks, such as helping a person with dementia to shower or use the toilet, but they can offer support with the requirements of the prison regime. Those we spoke with who had dementia or suspected dementia were positive about this service:

They come in and do things I’m struggling with like mopping the cell out for me . . . and doing certain jobs for me, doing my bed, which I have difficulty with. And pushing me over to meds when I need to be in my wheelchair.

Elderly resident, prison A

One of the other residents, he does my canteen . . . for me and adds it up. And the other carer comes in, does my menu for me.

Elderly resident, prison A

It would seem that the boundary between being an official peer carer and ‘just’ another resident can be blurred on occasion. A cellmate (not an official carer) of an elderly peer with dementia told us:

He’s not asked me to do it but because, like I say, we do get along and obviously I take his age into account, I’ll try and do things in the cell, like, you know, tidying up . . . He can make himself a drink or a lot of the time I’ll make him a drink or I’ll wash up his plate and his cutlery . . . he’ll always say to me, oh, you don’t have to do that . . . but I’m like, no, no, you sit there, you’re alright and I’ll quite happily do it for him.

Cellmate of elderly resident, prison A

This concern extended to the man speaking to staff to try to ensure that the elderly resident would be cared for after his release, which was imminent:

I’m getting out in May . . . I’ll make sure if I can to staff and to maybe some of the officers that they don’t just put anyone in there, you know what I mean, somebody who they think he might get along with and who is going to pull his weight in the pad.

Cellmate of elderly resident, prison A

One member of staff working in a large local prison expressed concern that the needs of elderly, confused prisoners may be neglected by staff:

If they’re coming out and saying I need help with this, that and the other, I don’t know where I am, I don’t know how to get my food, it can be quite irritating almost, having to keep repeating the same process to them. Quite often it results in them being . . . I wouldn’t say neglected but definitely left alone a lot of the time.

Mental health worker, prison E

Similar concerns were echoed in other prisons:

I don’t think [name] had let the wing know just how much he was struggling and it’s a very busy wing and if you don’t make your voice heard, you’re just locked, unlocked, and if you don’t ask for something you just get what you’re entitled to and that’s it.

Offender supervisor, prison B

We knew that he had dementia. But because he was compliant, because he was institutionalised, they let him get on with [it] where he was. It didn’t cause them a problem so therefore they let him be as he was.

Third-sector worker, prison D

In such circumstances, peer carers and the informal support networks provided by other residents seem indispensable.

A further defence against neglect and unmet needs was noted to be maintaining a stable group of staff on wings in which there were a significant number of vulnerable elderly prisoners, although this was not easy to achieve:

The problem is that on most of the wings there are not constantly the same officers. So [name of older person’s wing] tends to be the wing where almost anyone is put on there for a morning or an afternoon. So if you talk to the staff, well, I don’t know the people here, I’m just here for the morning, so the number of staff that are on there quite regularly tends to be quite small, so if they’re not around you’re kind of stumped a bit.

Third-sector worker, prison D

This respondent thought that the older person’s unit was an ‘easy target’ to poach staff from to serve other parts of the prison, as it was seen as a settled wing that could get along with less. Senior management in the prison accepted that, although consistent staffing was a goal, operational pressures often had an impact on the degree to which this was achieved:

There is an issue of continuity, but we have a core group of staff, so I guess that at any one time there’ll always be someone from the core group that works on [elderly persons’ wing] or that’s the way we would want it to be.

Governor grade, prison D

The provision of purposeful activity for this group of prisoners was variable across the sites we visited. In one prison, a third-sector organisation ran activities on most weekdays, offering a range of vocational and leisure opportunities. The goals of this service were expressed simply:

It’s a place where they’re not put down because they are not able to engage as everyone else does. We accept them as they are.

Third-sector worker, prison D

In other prisons, as noted in Theme 1: the challenge of an ageing prison population, staff felt ill-equipped and resourced to offer such activities due to insufficient staff time and lack of physical space within the prison. Local prisons experienced this most acutely. Discrete initiatives had been tried and some had fallen by the wayside, probably because they relied on the good will and enthusiasm of individuals, rather than being a formally recognised or commissioned service. The following quotation sums up what many respondents told us:

I think there is scope to potentially develop an area or a workshop or somewhere where people with mild impairments or dementia could potentially access, make it less stimulus for them, enable them to have one to one with people . . . I think it’s very difficult at the moment, staffing constraints, resources, in any organisation.

Social worker, prison C

Finally, one respondent wondered what the future held for these prisoners as they inevitably became older and frailer:

The thing is with these guys, they are now past that stage of feeling involved . . . hands up . . . had enough . . . they need to be in an area or place where they are actually, you know what they say, nursing homes for the infirm and what have you. They need to be in . . . they are going to have to start building prisons [for older prisoners] . . .

Peer carer, prison C

Poignantly, one elderly resident seemed to survive by simply ignoring the fact of being in prison:

I like to [be in] my own little world really. Thinking about things what I used to . . . when I was a young kiddie when we lived on the farm and that with my dad and it used to be great.

Resident, prison A

Theme 3: the importance of collaborative working relationships across professional boundaries

I would like to think that we mirror services within the prison estate that we do in the community . . . a joint approach.

Social worker, prison C

Throughout our interviews, staff from different professional groups described the challenges that caring for prisoners with dementia, and older prisoners more generally, presented on a daily basis. No professional group regarded their systems as wholly functional, and many commented on the difficulties of achieving joined-up care across organisational boundaries, both within and outside the prison walls.

Overall, resources from a range of agencies were noted as inadequate for the size of the task:

There’s just not enough support at all. So, in in the end, it will get to a point where it’s all going to be a massive challenge to help them. Because we don’t have that support, and the nurses are struggling as it is anyway, so they can’t come and support them.

Prison officer, prison C

The health-care provider changed here, and we thought, oh great, this could be good. But it’s not. And we have people come and they’re here for a matter of weeks or months and then they go again, and you’re back to square one.

Third-sector worker, prison D

Staff working with prisoners on residential units felt that they had a valuable role in noticing changes in a person’s presentation, but they often felt unsupported and undervalued by health-care staff when they raised concerns:

We’re with [them] all the time, from when the doors open ‘til the door shut; so, when we see something and we think that’s not quite right, we like to put it forward and we’ll make a request [for health care] to come and see them; it’s like there’s nothing wrong with them. But we’re with them all the time, so we can identify a little bit more than they can by just seeing them for 2 minutes.

Prison officer, prison A

It’s a case with health care, get off us, this is our business, it’s nothing to do with you, you don’t understand.

Third-sector worker, prison D

In such circumstances, the importance of nurturing individual relationships as a way to ‘get things done’ was emphasised:

We had a nurse here who was absolutely fantastic and she had a great relationship with us and we used to say to her we’ve got a problems, leave it with me, she would talk to the doctors, I’ll sort it, and she’d pass it through, and it was great. She went to another jail and since then we would never really be able to gain that kind of rapport.

Third-sector worker, prison D

The issue of ‘medical in confidence’ was raised, and the impact that a lack of information sharing had on wing staff’s ability to safeguard at-risk residents on the wing was noted:

If we all got together and all dealt with it together and had meetings on a regular basis; because they won’t tell us. Health care don’t tell us, so I can’t be aware that somebody’s got dementia or . . . to me it’s they’re saying it’s a confidentiality thing . . . but surely to God we should be there to help them and be aware . . . they don’t seem to want us to tell us which I find really difficult for us.

Prison officer, prison A

Non-health-care staff generally felt that they needed more information than they currently routinely received, but that this needed to centre around how to manage people’s care on the wing, rather than providing in-depth diagnostic details:

We need liaisons from our mental health teams, for them to actually say to staff, you know, you’ve got this prisoner, he’s got this problem, this is how you deal with it.

Safer custody officer, prison B

Health-care staff also wrestled with this issue, wondering if current practices were supporting discipline staff adequately:

When we identify people, are we giving the wing the right information?

Health-care manager, prison E

A health-care manager described the challenges of working in a prison setting:

[We are] constantly working in an environment which isn’t your own and largely a disciplined environment with men that have behaved quite badly and can behave quite badly, officers tend to automatically assume that if someone isn’t conforming or acting in a normal way that they would expect, that it is a disciplinary issue, until it becomes quite serious really.

Health-care manager, prison E

This was echoed by a member of the probation service:

Probation staff, unless they’ve worked in a prison . . . don’t know the workings of a prison and the fact that it can be a very uphill battle and that you’re working against a big machine that is the prison service.

Probation worker, prison D

Even though a range of health and custodial support services were operational in each prison, many respondents expressed concerns that services were not integrated, and vulnerable older people found themselves being passed from one service to another, hampering their ability to receive suitable care:

We’ve got so many different services in the prison and that’s quite unique in a way, so it’s its own community in itself [but] people segregate their thinking, so you deal with that, you deal with this.

Health-care manager, prison E

So every day we have that big handover at half one and all the different agencies from health care get together and it was [that] cases had been brought there and just kind of bounced between teams. No-one was really getting any kind of continued care. No-one was really sure how to manage them . . . it was like no-one would really take ownership for any of them.

Mental health worker, prison E

From an officer’s point of view, it was described as very difficult to navigate the system to identify ‘who does what’:

There’s a whole load of disconnects because . . . most prison officers don’t understand the difference between psychology, psychiatry and mental health teams.

Safer custody officer, prison B

Concern was also expressed that prisoners with suspected dementia or other cognitive issues did not receive services from the wider NHS and social services on an equivalent basis to those in the community. This was attributed to limited resources in community-based services that led to the prioritisation of people in the community, as those in prison were viewed as being in a safe place:

Appointments are made for CT [computerised tomography] scans and MRIs [magnetic resonance imaging scans] and things like that, so, yes, it’s accessible but time scales are probably not as quick as what they would be if you were accessing it from the community.

Social worker, prison C

Speaking about their experience of trying to arrange community support for a person due to be released from prison, a probation worker described their frustrations:

We became quite stuck because he wasn’t in the community . . . I had a really difficult time getting them to actually take the application seriously and actually allocate him a social worker, because obviously he’s not in the community. He’s not a priority for them.

Probation worker, prison D

We have failed everywhere in this. It isn’t just particularly at one particular department.

Probation worker, prison D

In what was hopefully an extreme set of circumstances, ineffectual team working created an unacceptable result for one person due to be released:

We recently had a man of 82 who’d been in 7 years released from here, no fixed abode, and he’d got early signs of dementia, and the way it was he was going to be shown to the gate here as every other prisoner is. He’d got no-one in the world, and he’d got to find his way to his probation office which was quite a distance from here.

Third-sector worker, prison D

One member of staff noted that local working cultures very much influenced the success or failure of interdisciplinary working:

We work well together as a team, we have a laugh with them and they laugh with us. You find that goes a long way on the unit as well because if were having a laugh and a joke it rubs off on everybody else and everybody else is upbeat and happy with it.

Prison officer, prison E

Theme 4: the challenge of training the workforce and peers

Before I actually started here, I’d had no experience of dementia at all, I’ve come in blind. During our training we had a very, very, very small, I think it was a 20-minute presentation on dementia.

Prison officer, prison A

We sought to establish what training staff and peer carers received to guide their work with older people with dementia, and what training they thought would be beneficial.

With regard to peer carers, a lot of uncertainty was expressed around training processes and content. No member of staff we spoke to could tell us what the training consisted of, how it was accessed or who was in charge of its delivery in their establishment. This is worrying, as the role of peer carer is one that can be immensely useful to vulnerable residents or, potentially, could open them up to exploitation or even abuse.

When asked directly whether or not he had received any formal training, a peer carer answered:

No. not actually training, but it’s a bit of common sense isn’t it . . . we’ve got information but basically some of that information’s out of date . . . and it said you’re not allowed to [push wheelchairs], but there’s no-one else here to do it . . . you just generally use your common sense, I think.

Peer carer, prison C

He noted that he had not gone through an official selection procedure:

[The role of carer] just sort of, landed on me . . . and I’ve never seen the carer people yet, and I’ve been in here 2 years.

Peer carer, prison C

He had, however, requested training in the role:

There’s no-one that specifically knows, or maybe there are, but I’ve never seen then in 2 years. I had a word with the mental health man one day, I’ll come over and see you [he said]; that was over a year ago. I just wanted a bit of information of what to look for and what not to look for.

Peer carer, prison C

In terms of how prisoners were selected to undertake a carer role, in one prison staff stated that a rigorous vetting procedure was in place, resulting in only ‘gold-standard’ prisoners being appointed. At another site, trusted prisoners in other, similar, roles were heavily relied on, which was noted as potentially problematic:

The prisoner carers tend to be the same people who are on the prisoner council, and they tend to be the same people who are listeners . . . so there’s a danger of overloading one small group of trustworthy prisoners.

Safer custody officer, prison B

However, in one establishment, a peer carer who acknowledged that he had not been formally trained had seemingly been allowed to directly task other prisoners with the role:

Maybe they saw something in me, and all of a sudden it was like . . . [name], you’re in charge of such and such. And I didn’t know what I was in charge of, and basically, I get the other lads who are willing to care for people . . . I seemed to be the one who’s the go-to person who gets it all sorted and makes sure it happens.

Peer carer, prison C

He did acknowledge the importance of monitoring who undertakes carer roles:

You’ve just got to be careful how you select, because some people think oh, that’s £2.50. They’ll do anything for £2.50 in this place, and you’ve got to be wary of the people you’re actually putting in charge of these people.

Peer carer, prison C

The potential impact of taking a hands-off approach to peer carer selection and training was highlighted in other prisons:

[Name] turned round and said I’m peeved off pushing these cripples around in the chair. If he’s a carer he shouldn’t be stating or coming out with facts like that, because that then will knock an older person for six.

Peer of elderly resident, prison A

Our carers have no training and, at the moment, very little in the way of risk assessment. And there are a couple of times when we’ve found vulnerable men, probably with people caring for them who shouldn’t have been.

Safer custody officer, prison B

Training for officers was thought to be vital by all respondents who commented on the matter. A prisoner with dementia thought that awareness training was key:

More officers trained for dementia, ‘cause a lot of them don’t understand. When you’ve got dementia a lot of people . . . and officers, they don’t seem to realise what you’re struggling with.

Resident, prison A

This view was echoed by a number of staff members:

I think once staff know what they’re dealing with, then they’ll deal with it sensibly and appropriately. If they don’t know what they’re dealing with, then it’s just challenging behaviour.

Safer custody officer, prison E

[Without training] for most staff on the wing . . . it’s just you know, that idiot doesn’t understand why I keep telling him to go in the cell, or to get out of the shower, or not to do this at this time of day . . . it’s always just, he always does this, nobody asks why he always does it.

Safer custody officer, prison B

None of the staff interviewed reported that they had received any formal or significant training in dementia and MCI. Some noted that they had learnt from having family members diagnosed with the conditions and others acknowledged having some access to learning materials through work channels:

We haven’t had training whatsoever, it’s only through my life outside of the job that I understand what some of these are going through.

Prison officer, prison E

There has been a leaflet gone round, that has been handed out to us for dementia, but apart from that there’s nothing been put in place yet . . . It’s not like a big leaflet, so it’s only like key points.

Prison officer, prison C

In one prison, the health-care manager was concerned that a lot of officers were very young and new in post and, as a result, were unlikely to bring experience of dealing with vulnerable people into their role. This concern was relevant to mental health issues in general, as well as to dementia and MCI specifically:

One of the recommendations that is going to come out of the recent . . . inspection is to raise awareness around mental health for officers . . . to empower them to have a conversation with [prisoners] themselves. At [name of prison] 47% of the discipline officers are currently in probation, so they’re all really brand new and quite inexperienced.

Health-care manager, prison E

A similar view was held in another prison:

The only thing is now we have an influx of new officers who [are] an average of 11 or 12 years old.

Third-sector worker, prison D

However, the respondent also acknowledged a lack of interest in receiving further education around dementia from some more experienced staff:

The problem is there’s a group of diehard prisons officers, if you got them together and said we’re going to talk to you about dementia, oh, we don’t need to know this, this is not us, we just do this and this and we lock them up and unlock them and feed them sort of thing.

Third-sector worker, prison D

The value of training was clear to most people and was often discussed in the context of officers being able to identify early signs of dementia and to pass those concerns on to health and social care services so that assessment and specialist intervention could take place:

I think if staff were able to identify them, sort of, an early intervention could take place at that point.

Social worker, prison C

There was consensus about what training for staff should cover:

I don’t think it needs to be long, I think it would just be the basics around their identified symptoms, triggers, what can be put in place in the meantime until professionals can be involved. And how to escalate that process if you have concerns.

Social worker, prison C

There was also a strong preference for training to be delivered face to face in a group situation to allow discussion and sharing of knowledge between participants. E-learning was widely thought to be an inferior mode of delivery that had less impact:

Face to face. I think it makes much more of an impact than kind of e-learning that you can just click your way through and not actually retain that much information from.

Mental health worker, prison E

In each prison in which we conducted interviews, at least one member of staff spoke about the issue of finding the time to train officers and other staff in all manner of subjects, not least dementia. Some training is mandatory and thus must be completed to meet centrally set key performance targets; this type of training is prioritised above all others:

A lot of the other training we have is mandatory, so that takes priority over any other training . . . my stuff, the suicide and self-harm stuff is just being made mandatory so I’m going to be able to deliver that but at the moment it’s not, so even I’m fighting with . . . other training which is mandatory . . . So to have a real impact, you’d want it to be mandatory, even it was just the awareness package.

Safer custody officer, prison B

I’m one of the trainers and in 2 years I’ve not delivered any training in mental health awareness.

Safer custody officer, prison B

Access to training was an issue for all types of staff. For example, one member of health-care staff had been developing an older person care pathway as part of an external professional development course, but it did had not got as far as implementation because funding for the course had been withdrawn by the prison and the staff member had felt unable to continue with the work unsupported:

I said well actually I’m not qualified to do this, I don’t want to put people at risk, having not got the necessary training in the area.

Mental health worker, prison E

Summing up, one experienced officer clearly made the point that training for prison officers, from their very first day on the job, is inadequate:

Prison officer training in general, is far too short, effectively eight weeks training to deal with the kind of mental health issues, the behavioural issues, the security . . . we try and ram people through a course in 8 weeks. The difficulty they have is if you improve the quality of your course, if you make it a 16- or 20-week course, then suddenly, you’re making a more skilled job, you’ve got to pay more. And the governments not going to pay more. So, if they’re not going to pay more, they’re not going to increase the training.

Safer custody officer, prison B

Recruitment

Three workshops were held in different regions of the country: Manchester, Newcastle and London. An invitation e-mail (see Report Supplementary Material 18) was circulated via the Offender Health Research Network (OHRN) and Prison and Offender Research in Social Care and Health Network. Individuals who were interested in participating were provided with further information (see Report Supplementary Material 19) and a participant information sheet (see Report Supplementary Material 20). Participants who attended on the day were asked to sign a consent form (see Report Supplementary Material 21). Forty-nine individuals with a range of experience in prison, probation, memory assessment and older adult community services, as well as carers of people with dementia, were recruited (16 individuals in Manchester, 11 individuals in Newcastle and 22 individuals in London). A full list of the roles of the workshop participants is given in Table 29.

Format

Workshop participants were divided into small multidisciplinary groups of between five and eight people, each of which was allocated a subset of preselected vignettes.

Facilitated by a researcher, participants were asked to read through the provided vignettes to familiarise themselves with the format. Opportunity was given for attendees to ask questions. Participants were encouraged to make notes on their copies, should they feel the need to do so. After participants had read the first vignette case study, the researcher asked for their initial thoughts on the following open-ended questions:

• Based on current practice, what care would this person receive in the community?

• Based on current practice, what care would this person receive in prison?

• Ideally, what care should this person receive in prison and how could the environment and practice be adapted to facilitate this change?

Although the group discussion was organic, an interview guide (see Report Supplementary Material 22) was used to ensure that the conversation remained on topic, enabling the researcher to find a balance between collecting rich, yet conversational, first-hand accounts, and gathering the information required to develop the ‘ideal’ care pathway and service specification. 85 Owing to the conversational nature of the groups, the researcher was able to take an observational role and take notes.

The process described was repeated for all vignettes.

Environmental modifications

All prisons should aim to be more dementia friendly. It was recognised that this will be relatively difficult in some establishments because of the age of the buildings and listed building status, but nevertheless some changes should be possible in all prisons. These should include:

• having clear signage to help people find their way

• labelling cupboards with pictures of the contents and using contrasting colours to make everyday items easier to identify

• ensuring that handrails and door handles are easy to use, comfortable and contrasting in colour with the walls, and that they have clear safety features to indicate where they end

• fitting call systems that are easy to identify in bedroom areas and water closet facilities

• ensuring that the entrance to reception areas is bright and well-lit, with maximum use of natural light, and that corridors are bright and evenly lit.

A number of available resources provide information on how to make modifications to achieve dementia-friendly environments (see Report Supplementary Material 25).

For those with more severe dementia, with or without significant daily living skill deficits or comorbid mental and physical health problems, several suggestions for service development were made.

For people with severe dementia who are not manageable on the wing because of significant MCI and/or ADL deficits, an adapted specialist wing will be developed. This regional 8- to 12-bed facility will be available on a referral basis. The environment will be adapted to meet the needs of this group.

Care pathway discussion also explored alternative accommodation spaces, to be considered on a case-by-case basis.

People

An important aspect of the care pathway is that individuals are supported throughout. All individuals are eligible for support, although the level of support delivered is dependent on their specific needs. This is assessed by a social worker as part of an earlier needs assessment.

A dementia-trained nurse will be employed to lead the dementia care pathway. This person will receive training in managing dementia in prison (tier 2). They will manage the screening and referral process, and monitor patients. This centralised role will support both health care and the prison to care for and manage prisoners with dementia and MCI. Furthermore, to establish a dementia-friendly community, prison and health-care staff will be trained in dementia using the DeCIsion study training package (tier 1) and other relevant training depending on the staff member’s needs.

If individuals with dementia are located on the wing, consideration should be given to employing a peer carer. In part 3 of this study (see Chapter 4), staff indicated that the roles and responsibilities of peer carers need to be clearly defined and that peer carers should be trained using the peer training (see Appendix 5). Links to guidance regarding the role, training, review and close monitoring of peer carers can be found in Report Supplementary Material 26. Health-care support workers will support an individual with ADL needs as required, following the needs assessment.

For those in the advanced stages of dementia, a named nurse and officer will be allocated to each individual. This will maintain open communication among staff and achieve a multidisciplinary approach.

The proposed regional specialist units will be staffed by health and social care staff and prison staff, with input from peer carers as required.

Activities and interventions

Discussion about the pathway established that prisoners could benefit from older adult support groups. Therefore, all prisons could consider older adult day groups offering stimulating activities, such as book clubs, board games, cookery classes, and arts and crafts. These could be provided by Age UK, the Alzheimer’s Society and/or similar third-sector organisations, volunteers, peers or the older person’s prison lead. Support groups or sessions should be available to offer advice regarding pensions and legal advice. This could be provided through the third sector, such as RECOOP and Age UK. Services such as dementia cafes should be considered when appropriate to signpost dementia support in a sociable and stimulating environment.

Interventions may be available to those across the dementia pathway as required and proportional to need. Therapies such as cognitive stimulation therapy could be considered, when appropriate. Support with medication should also be available. To promote ongoing independence, technology-assisted pharmacy support or dosette boxes will be provided if suitable for the individual. For the purposes of information sharing, a multidisciplinary combined register should be designed. This will summarise any comorbidities and other significant information. This will be managed by the dementia nurse, with information shared between staff, subject to prisoners’ consent. In addition to this, a personalised care plan will be available, developed by the dementia nurse and available to all staff subject to prisoners’ consent.

Supplementary guidance information is also available for those using the dementia care pathway (see Report Supplementary Material 26).

Literature review and scoping exercise

A scoping review of the literature was conducted to see what existing research had been published on training for dementia in the prison setting and also the wider literature on dementia training in health settings. A Google Scholar (Google Inc., Mountain View, CA, USA) search of the following terms was conducted:

• prison and staff and training and dementia or cognitive impairment

• health professional or health-care staff and training and dementia or cognitive impairment.

This identified several papers and reports that could inform training content (see Chapter 1, Literature search, for summary of these papers). Hand-searches of the references of identified papers and searches of the grey literature were also undertaken to identify further research or reports on training interventions conducted in the prison setting. Finally, we sent an e-mail to the OHRN mailing list and a Tweet from the OHRN Twitter account (URL: www.twitter.com; Twitter, Inc., San Francisco, CA, USA) asking for people to contact us with details of any existing training for prison staff on supporting people with dementia or MCI.

Questionnaire data

Interim analysis of the questionnaire data (part 2; see Chapter 3) was conducted to inform the content and format of the training. Data were analysed from both the prison governor survey (n = 85) and the health-care manager survey (n = 37). The data included who should attend training on dementia and MCI, preferred mode of delivery, setting, length, group size and frequency of training, teaching methods and who should deliver training. Training content analysis included gaps in knowledge or areas in which staff lack confidence in relation to identification and management of MCI and dementia, and what topics should be covered in training.

Qualitative data

An interim analysis of 17 interviews conducted with prison staff (six health-care staff, two social workers, one prison officer, one probation officer, three governors or deputy governors, two prisoners and two peer carer volunteers) in part 3 also informed the training design (see Chapter 4). The interviews were coded for themes covered in the topic guide that were pertinent to training: attendees and recipients, barriers to training, content, format and previous training. The data for each theme were summarised, and this informed training design and content.

Training working group

To obtain patient and public involvement and stakeholder views to inform training design, people from a variety of backgrounds and professions were invited to participate in a training working group, which involved attending two face-to-face meetings to discuss the training with members of the project team (JS, KF, KP and JSr). Eight people accepted the invitation to the first meeting, which was held on 31 January 2019. This group consisted of a neuropsychologist, a patient carer, a lecturer in dementia, a prison social worker, three prison officers (including an older person lead) and a representative from Alzheimer’s Society (prison project). A presentation was delivered outlining the existing literature on content and format for dementia training in prison, the Dementia Training Standards Framework,43 and the interim analysis of the survey and qualitative data. The group was asked for their views on proposed content and format throughout the presentation, and agreement on key training content and format issues was reached. The feedback was incorporated into subsequent drafts of the training.

The people who attended the first meeting were invited to review the first completed draft of the dementia awareness training. At the second meeting, attended by the patient carer, social worker and two prison officers, a presentation of the proposed training was given and the group was asked for their comments on each slide. The feedback was incorporated into the final draft of the training.

Owing to the more specialist content and the size of the training (see Results), the tier 2 training was reviewed by the neuropsychologist in the working group and received specialist forensic psychiatric input from the principal investigator (JS). Katherine Perryman designed and compiled the training presentations, and all drafts of the training were reviewed internally by the project team (JS, KF, LH and JSr) to draw on their experience of conducting research and clinical work in prisons, so that the training could be further adapted to the prison setting.

The training working group was very receptive to the development of separate training for peer carers to help them to look out for signs of dementia among older prisoners and also to provide day-to-day care and support. Peer carer training was subsequently developed.

Literature review and scoping exercise

We identified 29 potentially relevant papers to the prison setting and 12 papers from the wider health-care literature from our searches. The pertinent literature that could be used to inform training content and/or design is summarised in the literature search. We used the information in these papers and also existing training to inform training content.

The Dementia Training Standards Framework,43 and existing training from HEE based on this framework were the primary sources of content information. We obtained permission from HEE to adapt their training resources, which are aimed at health and social care staff. The dementia awareness training (tier 1) from HEE [URL: www.hee.nhs.uk/our-work/dementia-awareness/resources-tier-one-two-three (accessed 1 April 2020)] was used as a basis of the content of our dementia awareness training presentation, with adaptations made for the prison setting in terms of style, delivery, literacy and knowledge, and prison-relevant content. In addition, existing training on dementia awareness in prisons developed by the Alzheimer’s Society was reviewed, and some slides were adapted with the organisation’s permission.

In addition to the tier 1 training, to be delivered to all staff in the prison setting, we decided in conjunction with the training working group to develop a tier 2 training resource for prison and health-care staff who were likely to have more regular contact with people in prison with dementia. We used the resources on the HEE website to inform this training (Dementia Education and Learning Through Simulation 2) and also the e-learning developed by HEE [URL: www.e-lfh.org.uk/programmes/dementia/ (accessed 1 April 2020)]. These resources were adapted to the prison setting.

Questionnaire data

Recommendations for the training content and format were obtained from the interim analysis of the questionnaire data. To summarise, the following recommendations were presented to the training working group for discussion:

• recipients – all staff

• type of training – face to face, workshop training

• setting – on site

• length – one half-day session or shorter, modular sessions

• training methods – interactive presentations, case studies, group discussion, small group tasks

• facilitator – external clinician with prison experience, forensic psychiatrist or mental health nurse

• group size – small to medium

• content – increasing awareness by covering early warning signs, impact on functioning, communication, causes, local assessment (and referral) processes.

The training working group agreed with the recommendations, although they felt that the dementia awareness (tier 1) training did not need to be delivered by a clinician and could be delivered by a prison officer or member of health-care team, but ideally they would be involved in dementia in some way in either a specialist role or as a dementia champion within in the prison.

Qualitative data

A number of recommendations for the training design were obtained from interim analysis of the qualitative data. These were:

• train all staff in dementia awareness, offering more detailed and in-depth training as needed

• train peers to support other prisoners

• have a well-trained dementia champion (health care and officer side)

• training sessions to be no longer than 2 hours (modular training if any longer)

• face-to-face, interactive workshop training

• training methods to include case studies, discussion and role modelling

• small group training (e.g. 10–12 people)

• train-the-trainer approach is most practical

• on-site (at the prison) training is best

• it is more important for the facilitator to have dementia expertise than prison expertise

• training should offer a certificate of competence to recipients.

These recommendations were presented to the training working group, who agreed that they should all be followed.

Training working group recommendations

In addition to the agreements reached on the basis of the findings from the literature review, questionnaire and qualitative data, the training working group provided a number of other recommendations for the training. A key recommendation was that prison representatives indicated that, on the whole, prison staff do not respond well to role-play techniques in training. Therefore, it was decided not to include this method in our training packages.

Furthermore, the training working group felt that we should not include any of the video case presentations available as part of the HEE training resources as proposed, as they were not relevant to the prison setting. Therefore, we filmed our own case presentations for the dementia awareness training using actors to portray prison officers and prisoners showing signs of dementia. We developed eight film clips demonstrating the signs and symptoms of dementia, the likely impact of prison on someone with dementia, and good and poor communication skills.

To summarise, the literature and scoping exercise, the interim analysis of the quantitative and qualitative data, and the feedback from the training working group indicated that a training package was needed and should consist of three separate training programmes.

Costs of the DeCIsion staff training packages

The costs of delivering the following three training packages were calculated separately: (1) dementia awareness for prison staff, (2) dementia care and support in the prison setting for prison staff and (3) dementia awareness and support for peer carers. When it was felt that the training could be appropriately run by different types of staff, for example prison officers, nurses and/or social care staff, cost estimates for all options are provided. The mix of training session attendees will vary in practice depending on the prison. We have therefore provided costs for an example of typical attendees representing a mix of staff involved in the care of older prisoners.

Resources required to deliver appropriate cognitive impairment care pathways

The resources required to deliver each element of the care pathway detailed in Figure 2 were estimated in consultation with a consultant clinical neuropsychologist. Only additional resources specific to the dementia care pathway were included. General prison accommodation, overhead costs and existing procedures, such as reception screening and provision of health care, were not costed, as these are already provided as part of usual care.

When possible, resource use was presented at the individual level. However, some elements of the pathway represent semifixed costs at a prison site level. For example, individuals administering MoCAs must undertake mandatory training. The cost of this would be apportioned across the number of individuals going through the pathway. As this will vary by site, we have presented these site-level costs separately.

It was possible to provide resource use and cost estimates only for the elements of the suggested care pathways that already exist in some form. Some of the suggested elements, such as secure nursing homes, are just ideas at this stage. Cost estimates for these elements were therefore unavailable.

Typical care pathways for detailed case vignettes

The detailed case vignettes designed in stage 4 were divided into three groups representing different levels of complexity and, therefore, different care needs. Individuals represented in vignettes 1–4 were judged to require standard dementia treatment. Individuals represented in vignettes 5 and 6 required standard dementia care plus additional care for ADL needs. In vignettes 7 and 8 represent the pathway is represented for individuals who are referred to MASs as a result of their initial MoCA but receive a diagnosis of MCI and not of dementia.

As the prevalence estimates produced in part 1 were available only for dementia and MCI separately, not dementia with ADL, typical care pathways for these two diagnosis groups were outlined and the resources required to deliver these care pathways calculated. The individual-level resources required to deliver the typical care pathway for individuals receiving a diagnosis of dementia and for those receiving a diagnosis of MCI are presented separately. In addition, these individual-level costs were combined with the prevalence estimates produced in part 1 (see Chapter 2), to estimate the national costs of provision.

Unit costs

Costs were calculated by multiplying the resource use data by the relevant unit cost figures. All costs were valued in Great British pounds according to the price year 2017/18. This price year was chosen as it was the most recent for which the Personal Social Services Research Unit (PSSRU) costs of health and social care were available. Any unit costs not available for this price year were inflated or deflated to 2017/18 using the Consumer Price Index. 90 This general inflation index was chosen, as costs falling on multiple sectors were inflated. Only resource utilisation falling under the public sector perspective was costed. Utilisation of services funded by charities was therefore not included in the cost calculations.

Unit cost data are not as readily available in the criminal justice field as in health care. Unit costs were therefore derived from a number of different sources, following the methodology used in the PSSRU’s Unit Costs in Criminal Justice (UCCJ) report, when possible. 91 After consulting with offender health commissioners, the authors concluded that, once the associated security costs were removed, the cost per hour of health services delivered in the prison system would be the same as those delivered in the community. This assumption was therefore applied when prison-specific unit costs were not available.

NHS health-care costs were estimated using the PSSRU’s Unit Costs of Health and Social Care 201892 and the national NHS 2017/18 Reference Costs. 93 To account for the fact that not all of NHS staff time is spent on direct patient contact, unit costs relating to the cost of face-to-face or direct patient contact were used, when available. Costs of the MoCA were taken from those listed on its website. Unit costs of prison staff were taken from the Prison Service Pay Review Body94 and prisoner pay was taken from Her Majesty’s Prison and Probation Service prison service order. 95 Unit costs for medication were derived from the British National Formulary. 96–99

Costs of the DeCIsion staff training packages

Three training packages were developed in part 5 (see Chapter 6). The resources required to deliver these training packages are presented in Report Supplementary Material 29.

The dementia awareness training for prison staff (see Appendix 1) could be run by either a prison officer or a prison nurse, and each session lasts for 2 hours. The cost of facilitator time for a 2-hour session is estimated to be £32.48 if delivered by a prison officer and £72.00 if delivered by a prison-based nurse. This training session is aimed at all staff and the mix of attendees will vary by prison. We have provided costs for an example of typical attendees representing a mix of staff roles involved in the care of older prisoners. Based on 10 prison staff (eight prison officers, one health-care assistant and one prison-based nurse), the cost of attending staff time is estimated to be £356.14 for a 2-hour session. Dependent on their size, prisons may need to run these training sessions more than once. The cost of attendee time will vary in practice, depending on the number of attendees and their job roles.

The training session on dementia care and support in the prison setting (see Appendices 3 and 4) comprises two sessions, each lasting 2 hours, and is delivered by a prison mental health nurse. The cost of facilitator time is £72.00. This training session is again aimed at prison staff and the mix of attendees will vary by prison. We have provided costs of an example of typical attendees representing a mix of staff roles involved in the care of older prisoners. Based on the attendance of 10 prison staff (seven prison officers, one prison-based nurse, one mental health nurse and one health-care assistant), the cost of attending staff time is estimated to be £396.56 for a 2-hour session. Therefore, for the two sessions, the cost will be £144 for the facilitator and £793.32 for the participants. Dependent on their size, prisons may need to run these training sessions more than once. The cost of attendee time will vary in practice, depending on the number of attendees and their job roles.

The training session for peer carers on dementia awareness and support (see Appendix 5) could be run by either a prison officer or a prison nurse, and each session lasts for 2 hours. As with the dementia awareness training for prison staff, the cost of facilitator time for a 2-hour session is estimated to be £32.48 if delivered by a prison officer and £72.00 if delivered by a prison-based nurse. Peer carers receive a minimum rate of pay of £4.00 per week. Based on the attendance of four peer carers, and assuming that attending the training session represents half of their paid role for the week, it is estimated that the cost of peer carers attending time is £8.00 for a 2-hour session. The number of attendees per session will vary in practice, and prisons may need to run more than one session depending on their size.

Resources required to deliver appropriate cognitive impairment care pathways

The resources required to deliver each element of the care pathway illustrated are presented in Report Supplementary Material 30. These have been combined with the unit cost figures presented in Report Supplementary Material 31 to estimate the cost of this care provision.

For individuals to enter the care pathway, a member of the prison staff must first obtain training and certification to undertake MoCAs. This is an online process run by the MoCA Clinic & Institute and must be undertaken in addition to the DeCIsion staff training. The cost is £97.29 for the course fee. As the course takes 1 hour to complete, this also requires 1 hour of nurse time, which is estimated to cost £36.00. The key dementia-trained worker undertaking MoCAs will also require supervision. Although the amount of supervision will vary depending on the number of MoCAs undertaken, we have estimated the cost of 1 hour of supervision every month by a clinical psychologist as a guide. The staff time involved in attending and providing this supervision is estimated to cost £1092 per year, based on a clinical psychologist providing 1 hour of supervision every month to a band 5 nurse. The cost of the MoCA certification and supervision would be apportioned across the number of individuals going through the MCI care pathway. These costs are therefore presented separately as site-level costs in the top panel of the table in Report Supplementary Material 31 and 32.

The tables in Report Supplementary Material 33–35 present the resources required to deliver each element of the care pathway, which vary, dependent on the route each individual patient takes through the pathway. This includes the resources required for memory assessments conducted in the prison by the key dementia-trained worker and for referral to external dementia MASs. For an individual diagnosed with dementia after assessment at these external clinics, the additional resources required to provide adequate care for this individual in the prison are then listed. This includes the annual cost of medication prescriptions and a needs assessment from a social worker. Costs are also provided for equipment that can make the prison environment more dementia friendly, including dementia clocks, signage and wall charts. The costs of providing further support within the prison estate in the form of dementia cafes and cognitive stimulation therapy are estimated. Finally, for those receiving a diagnosis of severe dementia, the costs of some alternative environments are presented. This includes the costs of caring for individuals in forensic hospitals, as opposed to standard prison wings.

It was possible to provide resource use and cost estimates only for the elements of the suggested care pathways that already exist in some form. Specifically, we were unable to obtain cost estimates for providing adapted specialist wings and secure nursing homes. We did approach sites involved in the study regarding the cost of wing adaptations, but none had made any physical adaptations to their wings or had obtained quotes to do so. As adapted specialist dementia prison wings and secure nursing homes are merely ideas at this stage, informative cost information was unavailable. The costs presented are therefore the costs of providing memory assessments, additional health-care provision, staff support and small environmental adaptations, such as dementia clocks and signage. We also present the costs of transferring individuals with severe dementia to existing alternative accommodation options. The costs presented are those corresponding to the elements of the pathway currently available and, therefore, are those of elements that could be provided immediately within the current prison system.

Typical care pathways for detailed case vignettes

The dividing of the detailed case vignettes from part 3 (see Chapter 4) into three suggested groups is presented in Report Supplementary Material 36. Individuals represented in vignettes 1–4 were judged to require standard dementia treatment. The typical care pathway and corresponding resources required in year 1 for diagnosis and provision of standard dementia treatment for individuals represented in vignettes 1–4 is outlined in Report Supplementary Material 37. The cost of providing the individual-level elements of this care pathway is estimated to be £5159.55. When combined with the prevalence estimates from part 1 (see Chapter 2), it is estimated that providing this care pathway for the 858 individuals estimated to have dementia in the current prison population would come at a national cost of £4.4M.

Individuals represented in vignettes 7 and 8 were judged to have MCI rather than dementia. The typical care pathway and corresponding resources required for year 1 diagnosis and care provision of standard MCI treatment for individuals represented in vignettes 7 and 8 are outlined in Report Supplementary Material 38. The cost of providing the individual-level elements of this care pathway is estimated to be £4051.77. When combined with the prevalence estimates from part 1 (see Chapter 2), it is estimated that providing this care pathway for the 109 individuals estimated to have MCI in the current prison population would come at a national cost of £441,643.

It should be noted that the figures presented illustrate the resources required to provide the care pathway to individuals who receive a diagnosis. We have not included costs for those who are screened but then do not go on to receive a diagnosis. Costs have been presented for the typical care pathway of individuals who receive a diagnosis, to correspond to the prevalence estimates from part 1 (see Chapter 2). It should also be noted that the resources required, and corresponding costs, represent those applicable in only the first year, which are dominated by the costs involved with memory assessment clinics and diagnosis. They also represent only the individual-level costs of pathway provision. Additional site-level costs of DeCIsion training packages, MoCA certification and MoCA supervision would also apply. As our prevalence estimates are at a whole prison population, as opposed to prison site level, it was not possible to obtain accurate information on which to apportion these site-level costs. The figures presented in this section should therefore be interpreted with caution and subject to the above caveats.

Service development

• All prisons should develop a plan for the modification of wings to be more dementia friendly. The degree of adoption of environmental changes will depend on the physical structure and adaptability of the prison, including whether or not it has listed status.

• All prisons should consider how the regime can potentially have an impact on people with dementia and MCI and make necessary adaptations. These would include, but are not limited to, adjustments to activities (including their timing), meal provision, medication management and adjudications.

• Dementia assessment and treatment care pathways should be commissioned and developed in all prisons.

• All prisons should develop links with local MASs, and the input of MASs into prisons should be commissioned and provided proportional to the need of the population served.

• The need for regional prison specialist units, secure nursing homes and older people services in forensic hospitals should be examined nationally.

• These specialist units should be designed to meet the needs of people with severe dementia, with consideration given to environmental design, service development, philosophy of care and staffing structure. These services should be commissioned and developed.

Workforce

• Prisons should establish the staffing needs for the dementia and MCI care pathway in their establishment.

• Roles and responsibilities of all staff involved in the care pathway should be established.

• Roles and responsibilities and recruitment process for peer carers should be developed.

• Improved models for interagency working with information sharing should be developed.

Staff training

• All staff should receive dementia and MCI awareness training, and this should be repeated at regular intervals.

• All staff involved in the delivery of the dementia and MCI care pathway should receive tier 2 training, and this should be repeated at regular intervals.

• Staff training should be delivered to interagency, multidisciplinary groups to encourage a better shared understanding and ownership of the issue.

• All peer carers should receive peer carer dementia and MCI training, and this should be repeated at regular intervals.

1a: bad response

URL: https://youtu.be/uQjtfOxhkaQ (accessed 2 April 2020).

1b: good response

URL: https://youtu.be/lGFKU7KiSNM (accessed 2 April 2020).

2a: bad response

URL: https://youtu.be/rYwPg42mCMI (accessed 2 April 2020).

2b: good response

URL: https://youtu.be/Alv-Egco-BQ (accessed 2 April 2020).

2c: bad response

URL: https://youtu.be/wkNTOqvlb4s (accessed 2 April 2020).

2d: good response

URL: https://youtu.be/r93U1QRPTyM (accessed 2 April 2020).