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:

Jimmyoitnb
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.

 

 

 

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A tsunami of ageing: How will low- and middle-income countries respond to the rising tide of dementia?

This article was originally solicited for and published by Politik @ UNSW Magazine, and is reprinted here with permission.

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Dr Margaret Chan, Director-General of the World Health Organisation speaking at the first Ministerial Conference on Global Action against Demenita

 

Dr Margaret Chan, Director-General of the World Health Organisation (WHO), opened the first Ministerial Conference on Global Action against Dementia in March 2015 by describing the projected increase in dementia prevalence as an “oncoming tidal wave”(1). Dr Chan refers to the prediction that the number of worldwide cases, currently at 47.5 million, is expected to double every 20 years for the foreseeable future (2). She succinctly summarised the most worrying feature of this increase by remarking: “About 60% of this disease burden falls on low- and middle-income countries, which have the least capacity to cope”(3).

Dementia is a collective term to describe conditions, most commonly Alzheimer’s disease, that cause progressive deficits to memory, cognition, language and functioning. For the person diagnosed and their family, dementia can be associated with profound loss, grief and burden. Moreover, the financial costs are staggering; from productivity loss to community and residential care, these are projected to top US$1.2 trillion by 2030 (4).

An unequal burden

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There are a number of reasons why the expected increase in dementia cases will disproportionately affect low- to middle-income countries (LMICs). The majority of the worldwide population, and two-thirds of people living with dementia, reside in LMICs (5). As socioeconomic development proceeds, these regions move through the ‘health transition’, in which disease burden moves from communicable to non-communicable causes. Accordingly, LMICs are experiencing demographic ageing and an associated rise in dementia incidence at a sharper rate (246%) than high-income countries (131%) (6).

The health transition is particularly relevant in the case of dementia, to which some communicable disease is etiologically related. For example, it is estimated that up to half of those living with the human immunodeficiency virus (HIV) will develop an associated cognitive impairment (7), with the most severe cases occurring when antiretroviral treatment is unavailable or is delayed. Currently, less than 40 per cent of people with HIV in LMICs receive timely treatment (8), potentially adding many millions to current dementia projections.

Adding a third layer of insult is that residents of LMICs experience, and will continue to experience, disproportionate exposure to known environmental and lifestyle risk factors for dementia. This includes poorer access to education and higher rates of prenatal insult and dietary deficiencies. A growth in exposure to cardiovascular risk factors is also predicted with increasing urbanisation (9). Finally, lack of awareness and barriers to diagnosis mean that the current prevalence of dementia in LMICs is probably underestimated (10). As detection and diagnosis improve, so too will the number of people eligible for social and financial aid.

Taking cover

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Appropriate dementia diagnosis, treatment and care require sophisticated social and financial infrastructure that even the most developed regions have not yet mastered. To implement such infrastructure with their already limited resources, LMICs will need to take a multidimensional approach with particular focus on the below:

Research

The first step in responding to a problem is to understand its scope and impact. In this race, LMICs have always been far behind; the vast majority of dementia research has long been conducted in high-income countries (11). In 1998, the 10/66 Dementia Research Group was established to rectify this problem, largely funded by bodies in high-income nations or by the WHO. The Group has since significantly improved knowledge of dementia prevalence, diagnosis, risk profiles and impact in LMICs, but gaps are still noticeable. Much remains unknown about the how specific cultures are impacted by and might respond to a
rise in cases. Group leaders argue that responsibility for funding this research must be shared among higher and lower income nations, recognising the collective benefit that would result (12).

Social protections in old age

A crucial element of the dementia response in LMICs will be to address intersections with poverty. It has been established that people with dementia and their families are more likely to experience financial disadvantage than older people without (13). Most LMICs do not provide disability benefits to people with dementia, and pension coverage is not comprehensive (14). Multi-generational co-residence is a norm in many LMICs, and dependents are often expected to shoulder the financial burden of care. Despite reducing state costs in the short term, this model ultimately adds to them: caregivers are forced to leave the workforce prematurely, and development stalls as increasingly educated residents, particularly women, are forced back into the home.

Sustainable poverty reduction schemes are required that consider the implications of dementia on the whole family unit. The implementation of social pensions for the elderly has been suggested to help to break the cycle of chronic, intergenerational poverty (15). In LMICs, pensions can make up more than a third of the household income, improving living conditions for the whole family (16). Moreover, older people are known to invest the money they have into the education and health of their dependents, which ultimately advances a country’s socioeconomic development (17). Most importantly, pensions ease dependency as paid/formal care becomes more affordable.

Workforce capacity building

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While freedom from poverty also facilitates better access to health care, a long focus on managing acute medical conditions has left health providers in LMICs with limited understanding of the appropriate management of chronic disease (18). Changes to medical and nursing curricula and a broader role for specialists are required to appropriately meet increasing demand.

Awareness

Finally, the need for and value of dementia awareness is high; some LMIC cultures remain unfamiliar with the concept of neurocognitive disease, and many perceive dementia as a normal and anticipated part of ageing (19). This creates crucial barriers to diagnosis and receipt of care, and alleviates pressure on policy makers to provide adequate care services.

Knowledge of the early signs of dementia can lead to earlier diagnosis, allow for future planning, and facilitate access to peer support, known to protect against psychological distress (20). Understanding the modifiable risk factors for dementia can encourage preventative health behaviours in early and midlife, ultimately reducing late-life incidence of disease (and associated costs). Community awareness can also affect policy change. For example, the Australian government recognised dementia as a national health priority in 2012 after many years of lobbying from consumer and advocacy groups. Since then, funding for dementia has increased significantly, including a AUS$200 million boost to research announced in the 2014 budget (21).

Conclusion

Efforts to steel LMICs for the oncoming tidal wave are moving forward. Leaders from 80 countries, 80 philanthropic foundations, 45 non-Government organisations and 4 United Nations agencies signed the call for dementia action drafted by the WHO in March 2015. They committed to increasing public awareness, risk reduction campaigns, workforce capacity building and improvements to care, particularly in LMICs (22). It is increasingly apparent that only a coordinated approach between low, middle and high-income regions will allow LMICs to implement the infrastructure they need, but whether in-kind commitment transpires to effective action remains to be seen.

References
1. Chan, M, ‘Opening remarks at the First WHO Ministerial Conference on Global Action against Dementia’, speech in Geneva, Switzerland, 17 March 2015, <http://www.who.int/dg/speeches/2015/dementia-conference/en/&gt;, para. 3, accessed 4 Apr. 2015.
2. World Health Organization, Dementia: A global health priority (2009), <http://www.who.int/mental_health/neurology/dementia/en/&gt;, accessed 2 Feb. 2014.
3. Chan, op. cit., para. 5.
4. World Health Organization, op. cit.
5. Ferri, C.P. et al., ‘Global prevalence of dementia: a Delphi consensus study’, The Lancet, 366/9503 (2006), 2112-2117.
6. Prince, M. et al., ‘The global prevalence of dementia: A systematic review and metaanalysis’, Alzheimer’s & Dementia, 9/1 (2013), 63-75.
7. Cohen, R.A., Seider, T.R. and Navia, B., ‘HIV effects on age-associated neurocognitive dysfunction: premature cognitive aging or neurodegenerative disease?’, Alzheimer’s Research & Therapy, 7/37 (2015), 37-47.
8. World Health Organization, Global update on the health sector response to HIV (2014) <http://www.who.int/hiv/pub/progressreports/update2014/en/&gt;, accessed 7 Apr. 2015.
9. Norton, S. et al., ‘Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data’, Lancet Neurology, 13/8 (2014), 788-794.
10. Prince, 2013, op. cit.
11. Prince, M. et al., ‘Ageing and dementia in low and middle income countries – Using research to engage with public and policy makers’, International Review of Psychiatry, 20/4 (2008), 332–343.
12. ibid.
13. ibid.
14. ibid.
15. ibid.
16. Garcez-Leme, L.E., Deckers-Leme, M. and Espino, D.V., ‘Geriatrics in Brazil: a big country with big opportunities’, Journal of the American Geriatrics Society, 53/11 (2005), 2018–2022.
17. Prince, 2008, op. cit.
18. Beaglehole, R. et al. ‘Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care’, The Lancet, 372/9642 (2008), 940–949.
19. Prince, 2008, op. cit.
20. Schulz, R. and Martire, L.M. ‘Family caregiving of persons with dementia: prevalence, health effects, and support strategies’, The American Journal of Geriatric Psychiatry, 12/3 (2004), 240–249.
21. National Health and Medical Research Council, NHMRC unveils plan for $200m dementia boost [media release], 8 Aug. 2014, National Health and Medical Research Council, <https://www.nhmrc.gov.au/media/releases/2014/nhmrc-unveils-plan-200m-dementia-boost&gt;, accessed 6 Apr. 2015.
22. World Health Organization, Governments commit to advancements in dementia research and care [media release], 17 Mar. 2015, World Health Organization, <http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/&gt;, accessed 2 Apr. 2015.

5 reasons you should stop making jokes about dementia and Alzheimer’s disease.

Whenever I tell someone that I work with people with dementia, I am invariably met with a hilarious joke along the lines of “How do you remember to go to work? Ho Ho Ho!” or “I guess it wouldn’t matter if you were bad at your job, they wouldn’t remember anyway! Har Har HAR!”

Aside from not being funny, jokes like these make a mockery of a serious illness that has serious consequences. Here are five (of many) reasons why they need to STOP.

1: They’re disrespectful and hurtful

Just like making jokes about any other disability or illness, making a joke about dementia is disrespectful to the people it touches. Dementia can be devastating for the person diagnosed and their family, causing impairment to memory, language, thinking, planning, driving, independence and more.  More important than that, a person with dementia is always at their core the same person they always were: maybe fun, opinionated, strong, intelligent, lively, thoughtful, trustworthy, organised, funny, kind, and so on. Just like everyone else, they have skills and wisdom that they can and do share on a daily basis. Making jokes not only makes light of the very real consequences of their disease, but also dehumanises the person behind the illness and downplays the valuable contribution they make to society.

2: They discourage people from seeking help

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Unlike cancer, for which the profile has grown so much that one wouldn’t dare joke about it, dementia is a heavily stigmatised disease. People with dementia commonly report feeling embarrassed about their diagnosis and often don’t want friends and family to know. Jokes that paint an inaccurate picture of what it is like to have dementia are partly to blame for this: of course you’d be embarrassed if all you’ve ever heard is that dementia turns you into an incontinent, rambling mess. This discourages people with dementia and their families from accessing care, support networks or activities that can provide them with vital information and a community to make the journey easier.

3: Dementia doesn’t just happen to older people

When you make a joke about ‘senile old Aunt Milly’ or say ‘she’s just old and demented’, you are ignoring a large and growing group of people with dementia that emerged in their 40s, 50s and 60s. Young onset dementia (YOD) accounts for up to 9 per cent of all dementia cases, and can have devastating consequences for the person and their usually young family. People with YOD repeatedly report difficulties and delays with obtaining a diagnosis, and this is in part because of the wrong assumption that dementia is an ‘old persons disease’.

4: Even if it did, older people deserve your respect

At a recent conference I attended, one expert lamented that “so much of the difficulty in preventing, curing or caring for people with dementia comes down to ageism”. This could not be more true. Our society values youth to an extent that ageing is seen as a slow descent into death, with dementia a natural consequence of this ageing (which it is not). The nihilistic approach of “well, she’s going to die anyway” robs people with dementia of their personhood and of the care and support they deserve. Making jokes only perpetuates this ageism and the perception that the wellbeing of older people (and people with dementia) is less important than yours.

5: They’re not funny

You're embarrassing yourself.
You’re embarrassing yourself.

Like, really not funny.

Please stop.