Orange is the New Black and the realities of living in prison with dementia

I was late to game with Orange is the New Black. While my friends (and the internet) were going nuts about it, I would would put it on my mental ‘to watch’ list and then forget. I rue the time I wasted as it has quickly climbed to the top of my ‘favourite shows’ list. And when I thought I couldn’t love it any more, Jimmy was introduced.

You probably don’t remember her name, but you will definitely remember her story: Jimmy is rumoured to be the oldest inmate as Litchfield, at 100 years old. She’s pretty mild mannered but can hold her own. She responds to fellow inmates talking disrespectfully about her (right in front of her) like this:

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What a champion.

The thing that you probably remember about Jimmy is that she has dementia. She is shown wandering and confused, looking for her husband Jack. In Season 2’s “You Also Have a Pizza”, she escapes Litchfield and turns up at Caputo’s gig, mistaking him for her long dead husband. After this, guards are instructed to monitor her constantly. Understandably, this upsets Jimmy but her (correct) concern that “someone is following me” are dismissed as delusional. After briefly escaping their gaze, she ends up mistaking the church altar for a diving board and breaking her arm. In the end, she is granted ‘compassionate release’, with her friends noting that her care needs are too costly for the prison to provide. As she has no one to care for her, she will probably end up on the street.

Although this story line was upsetting, I watched it with delight. As a researcher in the field, it was thrilling to see a very popular program dissect issues of ageism and dementia care in prisons. OITNB has attracted praise for the diversity of its characters (which somewhat reflect the diversity of those in real-life women’s prisons) , and Jimmy is no exception. Portrayed excellently by Patricia Squire, Jimmy suffers the same indignity reported by many people with dementia: in trying to maintain her own agency and identity, she is routinely dismissed as ‘crazy’ and ‘demented’.

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Although Jimmy’s story was shocking to many (including the program’s lead character, Piper), it is based in reality: older people represent the fastest growing demographic of prisoners. OITNB’s writers could only cram so much into one episode, and accordingly barely scratched the surface of the realities of living in prison with dementia. Below is a snapshot of what we know.

Prisoners are, in general, at very high risk for dementia

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Figures courtesy of Justice Health & Forensic Mental Health Network 2012/13 Year in Review

Although Jimmy appeared to be isolated in her struggles, the reality is that she would probably not be the only person at Litchfield with cognitive impairment.

Prisoners are disproportionately exposed to a number of environmental and lifestyle risk factors for dementia. To start, many prisoners experienced socioeconomic disadvantage, homelessness, trauma, head injury, drug and alcohol disorders and mental illness before even reaching prison, and in some cases are poorly educated. Then, the prison environment itself exacerbates age-related illness with limited access to medical care and nutritious food, and high rates of smoking and infectious disease.

Combined, these factors are associated with a very high risk for cognitive decline and dementia, particularly for Indigenous inmates.

We don’t really know how many prisoners have dementia

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Despite this, estimates of the prevalence of dementia in prisons are unreliable. To start, they are typically based on white samples who do not reflect the diversity of the prison population. There is also a very serious problem with under-diagnosis in this population, for two main reasons:

Screening is woefully rudimentary

Screening for cognitive impairment in prisons is poor, sometimes limited to a single question at entry along the lines of “Have you ever had a head injury?” Confusingly, younger inmates are more likely to be screened for mental or cognitive impairment than their older counterparts, and every prison in Australia responds to cognitive complaints differently.

It is also unclear how to screen for dementia in prisoners. Traditional tests are validated in the general community, often on middle-class and educated participants. Prisoners may have a number of confounding conditions that all contribute to memory loss and thinking changes. In that context, it is very difficult to identify impairment specifically caused by neurodegenerative disease.

Older people don’t report concerns with their memory 

The regimentation of prison life can mask early symptoms of dementia, and staff are not trained to identify changes in cognition. This leaves the prisoner themselves responsible for recognising and reporting their thinking changes. However, some are reluctant to tell anyone for fear of attracting victimisation. There is also the (somewhat accurate) assumption that reporting would be futile, given that even basic accommodations for disability may be denied.

And what about when, like Jimmy, the person does not have insight into their condition and sees no need for support?

A lack of diagnosis can have serious consequences, including that symptoms like difficulty socialising appropriately, following instructions and performing daily tasks may incite reprimand.

Dementia can cause criminal behaviour

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A complicating factor is that some types of dementia, particularly behavioural-variant frontotemporal dementia (bvFTD), affect personality and impulse control, and this can result in criminal behaviour. One study found that 37% of people with bvFTD in their sample had committed a criminal act, compared with 8% of people with Alzheimer’s disease. Crimes committed by people with bvFTD are generally impulsive in nature, including sexual assaults, trespassing, theft and so on.

Given that rehabilitation is not a realistic outcome for these offenders, questions remain about the suitability of their incarceration. Community diversion programs do not exist in Australia for these cases like they do for some mental illness, so where are they to go?

Compassionate release is rare

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At the end of Jimmy’s story arc on OITNB, her fellow inmates comment in disgust that prisoners with high care needs like dementia are often released to save the prison system money. This is actually untrue, and contrary to popular belief compassionate release is exceedingly rare.

There are reasons why this can be a good thing: early release can pose a safety risk for the community that person joins, particularly if that person is prone to impulsive crimes like sexual assault (Note: the majority of older people in prison are sentenced for a sexual assault or related offence). Early release also draws criticism from victim’s advocacy groups, and while it is a cost saving measure for the prison system it effectively just moves the public health burden sideways, to another department. In some cases, like Jimmy’s, release is not favoured by the prisoner themselves, particularly if they have been in the prison for a long time. They may not have friends and family to care for them, an understanding how to care for their health problems, or the financial stability to support themselves.

Opposition to compassionate release probably also reflects the ‘penal harm’ model upon which some prison systems are designed: ongoing poor care and the denial of ‘free’ death (where this is desired and realistic) are considered adequate punishment for crime. It is worth noting that such an approach may backfire in the long run, given the very real prospect that prisons could become the single biggest provider of geriatric care in the next 30 years, and that older prisoners are at low risk of reoffending.

We don’t really know how to care for people with dementia in prisons

So if we have decided to keep people with dementia in prison for the duration of their sentence, the system must adapt to cope to their growing numbers. Vast amendments are needed, especially considering that being older in prison is already hard enough without cognitive impairment. In every aspect, the environment has been designed to accommodate younger men, who represent and have always represented the majority of the prison population.

Nobody really knows how best to care for people with dementia in prisons, but two models have been proposed: segregation and mainstreaming.

Segregation

In segregation models, prisoners with cognitive impairment are moved to a special unit with staff trained to support their needs. Such a system can reduce the risk of victimisation and inappropriate reprimand, and increase social support among the prisoners with associated positive effects on mental health.

However, these units are costly and are not feasible for many prisons. Being moved away from the prison that they know may not be favoured by the prisoner themselves, and can have negative effects on the population they leave behind. Older prisoners can have an authoritative and calming influence on younger inmates, and the prison’s delicate social balance can be disrupted when they are removed.

Mainstreaming

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Another option is to leave prisoners with dementia where they are and train staff and cognitively-healthy inmates to care for them. This approach has shown positive results for both inmates with and without dementia in trials overseas, and is a relatively cheaper option than specialised units. However, care provision may not be tailored enough, particularly for people with complex behavioural and psychological symptoms of dementia.

Ultimately, prisoners with dementia want the freedom to choose where they want to live and where they want to die (just like any other older person). While their right to that choice is disputed, it is essential to their access to adequate care.

Why care?

Advocates of the ‘penal harm’ model might argue that quality health and functional care for prisoners with dementia is a privilege that was given up during offending. But, in the context of the fundamental right of prisoners to protection from cruel and unusual punishment, the current system of no system just wont do.

Just like in Jimmy’s case at Litchfield, dementia is impossible for the prison system to ignore. The personal, social and financial impact is already severe and is growing. Policy changes are urgent, with interdisciplinary amendments to the system needed to cope with increasing demand. In reality, it is likely that the relative (un)importance of prisoner wellbeing may silence the noise created by issues of dementia, until they are too loud and chaotic to ignore.