By Connie Koh
Master of Occupational Therapy,
University of Canberra
The growing number of prisoners with dementia presents challenges for the criminal justice system. While the exact percentage of older inmates with dementia is unknown, with figures ranging from 1 to 44 per cent (Maschi et al 2012), some researchers estimate that the prevalence within the prison system is two to three times that of people in the outside community (Wilson & Barboza 2010).
Current statistics show that the population of older inmates has risen significantly. From 2002 to 2012, the number of prisoners in Australia, aged 50 and over, grew from 1,884 to 3,532 people (Australian Bureau of Statistics [ABS] 2003; ABS 2013), an increase of over 87 per cent. While the age of 50 may not seem old in the outside community, evidence suggests that a prisoner’s physical age tends to be 10 to 15 years higher than their chronological age (Maschi et al 2012; Williams et al 2012). The increasing number of older inmates results from the ageing of Western populations, changes to prosecution practices and sentencing laws, as well as higher numbers of older prisoners being convicted of offences that lead to long sentences (Baidawi et al 2011).
The costs associated with older prisoners have been estimated to be triple those of younger prisoners, and these estimates do not include the added costs associated with caring for those with dementia (Maschi et al 2012). Dementia, an umbrella term to describe a range of symptoms caused by disorders affecting the brain, impacts a person’s behaviour, thinking and their ability to perform everyday tasks (Alzheimer’s Australia 2012). The risk of dementia increases with age, and prisoners have higher levels of other risk factors for dementia, including traumatic brain injury, substance abuse and depression (Williams et al 2012; Baidawi et al 2011). It is therefore critical that those in the justice system, including healthcare professionals working in this setting, develop practices that support those inmates with dementia.
The aim of this paper is to outline the impact of prison on occupational engagement and participation for those with dementia; the role of occupational therapy for inmates with dementia; and how dementia impacts the provision of occupation-focused practice. In addition, implications for occupational therapy practice and research will be discussed. While some may question the value of providing healthcare to inmates, the philosophy held by the author follows that of the Basic Principles for the Treatment of Prisoners, which ensure that prisoners are treated with respect and are provided with access to healthcare services without discrimination (United Nations Office of the High Commissioner for Human Rights, 1990).
The impact of prison on occupational engagement and participation for those with dementia
The prison environment affects the occupations in which inmates can engage and the extent to which they can participate in these occupations. The environment rarely supports meaningful occupation among prisoners (Whiteford 1997), and even less so among prisoners with dementia. The physical environment of prisons has generally been designed for younger, able-bodied people, and tends to lack facilities that support those with wheelchairs, walking frames, hearing or vision impairments (Baldawi et al 2011).
To be independent, inmates are expected to be able to feed and toilet themselves. They are also expected to be able to find their way from their cell to the dining hall on time, to climb on and off their assigned bunks, to follow orders from staff and respond appropriately to alarms (Williams et al 2012). Depending on the extent of their impairments, inmates with dementia may not be able to perform these activities, due to loss of reasoning skills, memory or behavioural impairments. Since staff may not notice when an inmate has developed a cognitive impairment (Williams et al 2012), inmates with dementia may be treated unfairly. Being unable to be comply with expectations may result in disciplinary action, possibly secure confinement, which limits the inmate’s ability to participate in occupation and can be detrimental to well-being (Maschi et al 2012).
Because the prison culture encourages exploitation of weakness (Haney 2001), inmates with dementia may be vulnerable to victimisation by other prisoners (Stojkovic 2007). In shared spaces, behaviours associated with some types of dementia, including pacing, aggression, agitation and impulsivity may result in conflict, or possibly violence (Maschi et al 2012). This constant threat of victimisation or violence affects prisoners’ ability to engage, because they are forced to devote their energies toward self-protection and hyper-vigilance.
Within the setting, unsurprisingly, autonomy is limited. Inmates are expected to comply with set meal times, bed times and times to speak with or see non-incarcerated friends and family (Molineux & Whiteford 1999). Imprisonment may also lead to loss of some everyday occupations, such as laundry, cooking and shopping. Opportunities for occupation may exist in some prisons, but compliance with safety concerns take precedence. As a result, inmates may lack access to appropriate tools, and by association, access to potentially meaningful occupations that require tools and social contact related to those occupations (Whiteford 1997). Furthermore, while the setting may provide opportunities for prisoners to engage in activities, choices may be limited, highly dependent on staff availability or only offered as group sessions (Craik et al 2010). Options are more limited for those prisoners with dementia. Because many prisons struggle to manage more challenging inmates, including those with dementia, these inmates’ needs are less likely to be met and they are more likely to experience neglect (Stojkovic 2007).
The regimented nature and strict adherence to safety considerations that characterise the prison environment deprive inmates of opportunities to engage in meaningful occupation. For those inmates with dementia, the environment provides even fewer opportunities, because the prison system is poorly equipped to meet the needs of those with challenging health issues.
The role of occupational therapy for inmates with dementia
While few studies specifically describe the role of occupational therapy for inmates with dementia, findings from other occupational therapy literature may apply to some extent. The primary role of occupational therapy is to enable engagement in life, through meaningful occupation, to support health and well-being (Polatajko et al 2007). Enabling occupation involves a range of areas, including collaborating with the person to determine meaningful occupation, evaluating and modifying the person’s environment and educating care providers on how to support the person’s occupations (O’Sullivan 2011). Occupational therapy’s holistic approach makes it well suited to addressing these areas, while still working within the prison context.
Many research studies describe a range of activities that have been found to be beneficial for people with dementia. Engaging in physical activity, such as walking, has a positive impact on people’s mood, quality of sleep and functional abilities, which can reduce the incidence of disruptive behaviour (Eggermont & Scherder 2006). Cognitive stimulation therapies, which include reality orientation and reminiscence therapy, are structured activities that facilitate memory or encourage discussion of past experiences, with the purpose of strengthening cognitive function (Yuill & Hollis 2011). Leisure activities, which may involve music, art or gardening, have the potential to facilitate socialising, assist people with managing time and allow people to feel a sense of accomplishment (O’Sullivan & Hocking 2006). Simply because opportunities for activities exist, however, does not mean people will benefit from them. The core belief of occupational therapy is that occupations must be meaningful, which relates strongly to the person’s self-identity, and must therefore be tailored to suit that person (Phinney et al 2007).
Occupational therapy also places importance on a person’s environment, which should support the person in his/her occupations. If the environment fits the person, it will enable independence, reduce agitation and challenging behaviour, improve the person’s nutrition, and facilitate occupational engagement (Waller 2012). Some of the general aspects that occupational therapists might evaluate for people with dementia include features that facilitate independence and aspects that assist with orientation. Visual contrast, through the use of colour, enables independence with personal hygiene, eating and detecting doors (Phyland & Osborne Park Hospital Occupational Therapy Department, 2011). Similarly, signage, good lighting, multiple visual cues, colour and furnishings all contribute to helping a person orientate themselves, which makes them feel more comfortable (Alzheimer’s Australia 2004).
Carer education is also a key area in which occupational therapy can support those with dementia. Discussing communication strategies, providing education resources and outlining self-care techniques are just some of the ways in which therapists can support carers and those with dementia (Phyland & Osborne Park Hospital Occupational Therapy Department, 2011). The overall aim in working with carers is to improve their feelings of competence and confidence (Graff et al 2006).
Because caregivers are just as unique as the people they care for, their caregiving experiences are particular to them. Josephsson et al (2000) suggested taking a collaborative approach with carers, to understand their perspective of caregiving, which informs how carers interact with those they look after, and together formulating strategies to providing care. In essence, occupational therapists work with carers much in the way they support others; they adopt a person-centred approach that facilitates the carer’s meaningful occupation.
While the cited literature has been taken from non-prison settings, the fundamental ideas still apply. It is important to provide inmates with meaningful occupation, which should be a collaborative process where the inmates’ past experiences, identity and interests are taken into consideration. The prison environment should support inmates’ independence and their ability to orientate themselves. Carers in the system would benefit from working together with occupational therapists to develop strategies to enable their occupation of caring.
How dementia in prison impacts occupation-focused practice
Several aspects of dementia impact occupation-focused practice. The International Classification of Diseases, Revision 10 (ICD-10) describes dementia as a syndrome that is chronic or progressive in nature, where there is a disturbance of higher cognitive functions, including memory, cognitive processing, orientation, comprehension, calculation, learning capacity, language and judgement (World Health Organisation 2010). People with dementia differ in their impairments, and their abilities may change from one day to the next, or even within the same day.
As noted earlier, however, the primary goal of occupational therapy is enabling occupation, and as a result, the focus is on abilities, rather than disabilities. Related to this concept, in light of the deteriorating nature of dementia, occupational therapy in this context is not one of rehabilitation, but of habilitation (Raia 2011). Occupational therapy in this sense involves maximising independence and emotional health, through creating physical and social environments that support people in their occupations.
In a prison setting, simple environmental modifications could reduce the potential for confusion or agitation. According to Wilson and Barboza (2010), strategies to achieve this aim may include making areas well-lit; using visually contrasting colours to enable the person to find toilets; removing mirrors; and using signs with words and symbols. Clothing should be easy to put on and take off, to help address incontinence-related issues. Hearing aids and glasses may enable independence and reduce agitation, because the inmate is better able to understand their surroundings.
In terms of the social environment, some prisons have developed successful programs to improve the care of inmates with dementia. California Men’s Colony uses a prisoner carer scheme where interested prisoners help fellow inmates who have dementia. The carers, who receive $50 a month for their work, receive special training through the local Alzheimer’s Association chapter. The carers develop a relationship with the inmates and protect them from victimisation by other inmates (Ubelacker 2011). Similarly, SCI Waymart has established a program where inmate volunteers provide general support to those with dementia, by writing letters and reading, as well as playing games with them (Moll 2013). In addition to providing a better social environment for these inmates, the programs provide the carer inmates with meaningful occupation, as well as easing some of the responsibilities of prison staff.
The social environment can also be improved through staff training. As Moll (2013) described, Fishkill Correctional Facility has a special unit for those prisoners with cognitive impairments. The staff comprise only those who have expressed an interest in working in the unit, and they then undergo a special training program delivered by the local Alzheimer’s Association branch. Practices adopted in the unit are intended to minimise confrontations that may confuse or upset inmates. Conversations with inmates, for example, take place in their rooms or in common areas, rather than in staff offices. Because the staff learn that inmates’ aggressive behaviour may relate less to hostility and more to dementia, these challenging behaviours are managed without force (Hill 2007).
Increasing participation of inmates with dementia is also key to creating a better environment, to support well-being, social engagement and physical health (Moll 2013). Aged day care centres, such as that at HMP Stafford, offer inmates a range of leisure activities, including cookery classes, writing and gardening. Some of the older prisoners have also had the option of in-cell occupations, such as painting and knitting. Previously, these inmates had no occupations during the day (Moll 2013).
As Moll (2013) explained, exercise programs have also been developed to target those prisoners with dementia. These programs are ideal for older people, and include chair-based exercises and activities such as yoga, tai chi and martial arts. Some prisons, such as HMP Stafford, have simply created a separate exercise time for its older inmates, to allow them access to the exercise facilities, while avoiding potential victimisation by younger prisoners.
Moll (2013) also reported that some prisons encourage prison employment, and have developed specific tasks for those prisoners with dementia. At Onimichi Prison, prisoners separate plastic beads, put small products into bags and insert instruction manuals into products. These tasks, which are simple and repetitive, keep the inmates occupied, while giving them something they can successfully complete.
Implications for occupational therapy practice and research
While some prisons have developed programs for inmates with dementia, improvements to prison systems worldwide can still be made. Occupational therapy has much to offer to these inmates. While examples of good practice have been described, what is potentially lacking is the meaningfulness of the occupations in which the inmates are participating. As noted earlier, making activities available does not necessarily make them meaningful for the participants. Occupational therapists, with their person-centred approach, could work with inmates to find meaningful occupations, in an environment designed to physically and socially support the inmates in their occupations. Ensuring best practice, however, requires the combined efforts of an interdisciplinary team (Maschi et al 2012).
Changes to health provision depend on budget allocations. Growing health care costs, combined with the perception that prisons should be punitive, contribute to apathy in improving prison conditions (Maschi et al 2012). What is needed is research on cost-effective healthcare practices in prisons. Without it, it is impossible to justify the financial costs associated with proposed changes. Collecting data on the prevalence of dementia and other health issues experienced by older inmates may be the first areas to research (Baidawi et al 2011).
Occupational therapy research in this particular area is also lacking. Some studies have looked at occupation in forensic mental health units (Craik et al 2010; O’Connell et al 2010), but there is little research on occupational therapy with those inmates who have dementia. Some of the occupational therapy research from settings such as aged care facilities can inform practice in prisons. The prison environment, however, with its emphasis on security and safety, combined with the social and health backgrounds of the inmates, presents a unique context (Dawes 2009). It would be useful to research the potential benefits of occupational therapy for inmates with dementia, as well as the cost benefits of occupational therapy in this setting. Additionally, the practical and ethical considerations associated with releasing inmates with dementia should be explored.
Traditionally, prisons have not been designed to accommodate older prisoners, and as a result, policies and practices will need to be developed to address the health needs of older inmates, including those with dementia. Occupational therapy has a role to play in enabling those with dementia to participate in meaningful occupation. While dementia impacts occupation-focused practice, ultimately, emphasis is placed on people’s abilities, rather than their disabilities, which can vary day to day and over years. Those with dementia would therefore benefit from occupational therapy’s flexible approach that provides environmental and social supports to maximise occupational engagement. While occupational therapy has much to offer to these inmates, research is still necessary to analyse the costs and benefits associated with delivering occupation-based interventions.
Alzheimer’s Australia (2004). Dementia care and the built environment. Position paper 3. Retrieved from Alzheimer’s Australia website: http://www.fightdementia.org.au/common/files/NAT/20040600_Nat_NP_3DemCareBuiltEnv.pdf
Alzheimer’s Australia (2012). What is dementia? Retrieved from Alzheimer’s Australia website: http://www.fightdementia.org.au/common/files/VIC/Help_Sheet__About_Dementia_1_fin.pdf
Australian Bureau of Statistics (2003). Prisoners in Australia, 2002 (Cat. no. 4517.0). Canberra, Australia: ABS
Australian Bureau of Statistics (2013). Prisoners in Australia, 2012 (Cat. no. 4517.0). Canberra, Australia: ABS
Baidawi S, Turner S, Trotter C, Browning C, Collier P, O’Connor D, Sheehan R (2011). Older prisoners – a challenge for Australian corrections. Retrieved from Australian Institute of Criminal Justice website: http://www.aic.gov.au/documents/F/C/5/%7BFC556827-B995-497B-AE69-D2C2B85922C2%7Dtandi426_001.pdf
Craik C, Bryant W, Ryan A, Barclay S, Brooke N, Mason A, Russell P (2010). A qualitative study of service user experiences of occupation in forensic mental health. Australian Occupational Therapy Journal, 57(5), 339-344.
Dawes J (2009). Ageing prisoners: Issues for social work. Australian Social Work, 62(2), 258-271.
Eggermont L, Scherder E (2006). Physical activity and behaviour in dementia: A review of the literature and implications for psychosocial intervention in primary care. Dementia, 5(3), 411-428.
Graff M, Vernooij-Dassen M, Zajec J, Olde-Rikkert M, Hoefnagels W, Dekker J (2006). How can occupational therapy improve the daily performance and communication of an older patient with dementia and his primary caregiver: A case study. Dementia, 5(4), 503-532.
Haney C (2001). The psychological impact of incarceration: Implications for post-prison adjustment. Retrieved from US Department of Health and Human Services website: http://aspe.hhs.gov/hsp/prison2home02/haney.htm
Hill M (2007, May 29). New York prison creates dementia unit. The Washington Post. Retrieved from: http://www.washingtonpost.com/wp-dyn/content/article/2007/05/29/AR2007052900208_2.html
Josephsson S, Backman L, Nygard L, Borell L (2000). Non-professional caregivers’ experience of occupational performance on the part of relatives with dementia: Implications for caregiver program in occupational therapy. Scandinavian Journal of Occupational Therapy, 7(2), 61-66.
Maschi T, Kwak J, Ko E, Morrissey M. (2012). Forget me not: Dementia in prison. The Gerontologist, 52(4), 441-451.
Molineux M, Whiteford G (1999). Prisons: From occupational deprivation to occupational enrichment. Journal of Occupational Science, 6(3), 124-130.
Moll A (2013). Losing track of time. Dementia and the ageing population: treatment challenged and examples of good practice. Retrieved from the Mental Health Foundation website: http://www.mentalhealth.org.uk/content/assets/PDF/publications/losing-track-of-time-2013.pdf
O’Connell M, Farnworth L, Hanson E (2010). Time use in forensic psychiatry: A naturalistic inquiry into two forensic patients in Australia. International Journal of Forensic Mental Health, 9(2), 101-109.
O’Sullivan G, Hocking C (2006). Positive ageing in residential care. New Zealand Journal of Occupational Therapy, 53(1), 17-23.
O’Sullivan G (2011). Ethical and effective: Approaches to residential care for people with dementia. Dementia, 12(1), 111-121.
Phinney A, Chaudhury H, O’Connor D (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging & Mental Health, 11(4), 384-393.
Phyland L, Osborne Park Hospital Occupational Therapy Department. (2011). Dementia: Osborne Park Hospital guide for occupational therapists in clinical practice. Retrieved from Dementia Training Study Centres website: http://www.dtsc.com.au/dementia-guide-for-occupational-therapists-in-clinical-practice/
Polatajko H, Davis J, Stewart, D, Cantin N, Amoroso B, Purdie L, Zimmerman D (2007). Specifying the domain of concern: Occupation as core. In E Townsend & H Polatajko (Eds), Enabling occupation II: Advancing an occupational therapy vision for health, well-being and justice through occupation (pp. 13-36).
Ottawa, Ontario: CAOT Publications ACE.
Raia P (2011). Habilitation therapy in dementia care. Age in Action, 26(4), 1-5.
Stojkovic, S. (2007). Elderly prisoners: A growing and forgotten group within correctional systems vulnerable to elder abuse. Journal of Elder Abuse and Neglect. 19(3-4), 97-117.
Ubelacker S (2011, March 29). Program trains inmate caregivers to watch over aging prisoners with dementia. City News Toronto. Retrieved from: http://www.citynews.ca/2011/03/29/program-trains-inmate-caregivers-to-watch-over-aging-prisoners-with-dementia/
United Nations Office of the High Commissioner for Human Rights. (1990). Basic Principles for the Treatment of Prisoners. Retrieved from the UN OHCHR website: http://www.ohchr.org/Documents/ProfessionalInterest/basicprinciples.pdf
Waller S (2012). Redesigning wards to support people with dementia in hospital. Nursing Older People, 24(2), 16-21.
Whiteford G (1997). Occupational deprivation and incarceration. Journal of Occupational Science, 4(3), 126-130.
Williams B, Stern M, Mellow J, Safer M, Greifinger R (2012). Aging in correctional custody: Setting a policy agenda for older prisoner health care. American Journal of Public Health, 102(8), 1475-1481.
Wilson J, Barboza S (2010). The looming challenge of dementia in corrections. Correct Care, 24(2), 10-13.
World Health Organisation (2010). Mental and behavioural disorders: Organic, including symptomatic, mental disorders. Retrieved from World Health Organisation website: http://apps.who.int/classifications/icd10/browse/2010/en#/F00
Yuill N, Hollis V (2011). A systematic review of cognitive stimulation therapy for older adults with mild to moderate dementia: An occupational therapy perspective. Occupational Therapy International, 18(4), 163-186.