Prisons Of The Mind, Dementia In Aging Inmates

Julie Gillis reflects on how trusting prisoners with the care of inmates affected by dementia increases their ability for compassion.


“Alzheimer’s currently affects 5.4 million Americans, a number expected to double by 2040. Experts believe that Alzheimer’s disease in prisons could grow two or three times as fast, said John Wilson, senior clinical operations specialist for MHM, because “protective factors that might mitigate developing dementia are slim to none in prison — things like complex jobs, rich social environment, leisure activities.”

My mother used to be able to talk to me. Eight years ago she was a bright and active woman and she showed signs, back in those days after the birth of my second child, of occasional confusion and agitation. My husband and I realized something was wrong when she wrote a check completely wrong, then couldn’t use her bank card, and we found her files (usually meticulous), in complete disarray.

She was diagnosed with Alzheimer’s not long after. It’s been a long and difficult road, watching her decline bit by bit, losing pieces of herself, seeing her angry and struggling during the most cruel portion of the disease where she had cognition enough to know that her cognition was going.

We were lucky. We had money and support enough to make sure she had ample care, either in her own home or in the eventual nursing home where she resides today, speechless, nearly motionless, but with an occasional flicker of a smile on her face. Does she recognize us? Doubtful. She is in a prison of her own mind, with thoughts unknowable, if they are there at all.

When I read the New York Times article on aging patients who have dementia in the prison system I was floored.  The prison system in the US has never impressed me as a place where criminals are placed to truly learn, heal and repent. It’s not a place where anyone can expect gentle treatment, education or skill building. At worst it’s a place filled with sexual assault, brutality, and dehumanization. And it’s growing.

“Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners. About 10 percent of the 1.6 million inmates in America’s prisons are serving life sentences; another 11 percent are serving over 20 years.  And more older people are being sent to prison. In 2010, 9,560 people 55 and older were sentenced, more than twice as many as in 1995. In that same period, inmates 55 and older almost quadrupled, to nearly 125,000, a Human Rights Watch report found. “

When I pondered the facts of aging inmates suffering through a terrible disease, my heart ached.

“The dementia population is going to grow tremendously,” says Ronald H. Aday, a sociologistand the author of “Aging Prisoners: Crisis in American Corrections.” “How are we going to take care of them?”

In the California system, a program has begun to train inmates to take care of patients with dementia.  The program is called The Gold Coats, and inmates who are accepted are given a small stipend, support and training, and granted privileges for their work.  They help bathe, feed, clothe and sit with the affected inmates, providing personal, but not medical care.

While this might be seen as a cynical cost saving move (and indeed that’s an entirely different conversation), using criminals to take care of criminals, the outcomes for the caregivers are profound. More than just perks for the additional duties, the impact on the inmate has far deeper impact.

The chief psychologist of the California Men’s Colony, Heriberto G. Sanchez remarked that inmates, “were appreciative that someone from the outside world thought they could do this.” One inmate wrote in an evaluation, “Thank you for allowing me to feel human.”

I want to ask you to think about that statement for a moment.

“Thank you for allowing me to feel human.”

Back in 1992, I lived in Seattle and got a job working as a home care aide providing cooking, cleaning, and personal care to elderly patients who were still living at home. It was a service designed to keep them at home, in a familiar space for as long as humanly possible. Many of the patients I worked with had some form of dementia and each visit with them was profoundly challenging, yet moving.

Most of the people I saw were terribly embarrassed to need the help. From a man who had lost his wife recently and just wanted to hold my hand, to a woman whose children had left her alone for much of the time and needed serious personal care, none were necessarily happy I was there. I witnessed one man losing his wife to a nursing home. He cried with me. All I could do was sit and hold him, which might not have been the appropriate PC thing to do, but I didn’t much give a damn.

That work, just making sure someone’s clothes are clean and put away, profoundly helpful to the client. And it had a huge impact on me as a 20-something kid, getting paid nearly nothing for the work.  I don’t think I ever felt so human and so vulnerable as when I worked there.  Imagine doing this work, as a prisoner, after committing severe crimes, or a life of violence. After experiencing prison, being kept from family, after loneliness and hopelessness.  Imagine getting to experience and learn compassion, by simply helping.  By being allowed to be human.

It shakes me, personally, what we have done in this country, with our penal system. Knowing that issues of mental illness affect many, that sexual assault, black market influence, and greed make incarceration more dehumanizing. Heck, that it seems more and more people need to be there, that we build more and more jails and privatize prisons. Consider how many inmates will develop this terrible and dread disease, prisoners not only in concrete walls, but in their own minds,  that there seems to be no hope.

“Thank you for allowing me to feel human.”

All we have are each other, each other to provide for each others dignity, faith, caring, and safety for none of us can do it alone (at least not for long).  This is where hope lives, in the care and feeding of each other. In trust, in compassion. In justice certainly. A crime deserves a punishment. But not dehumanization and erasure. Our goodness comes from acknowledging the humanity of each of us, flaws, sins, crimes and all. We are all  fully and truly human, no matter what. Maybe if we could teach these things from the beginning, we’d have less need for jails at all.


 Photo courtesy of maciek_draba

About Julie Gillis

Julie Gillis is a coach, writer, and producer focused on social justice, sex, and spirituality. She is dedicated to sexual freedom and education, equality for the LGBTQ community, and ending sexual violence. Julie intuitively helps people live their fullest lives, navigating terrain from relationships to sex education. She writes at The Austin Chronicle, Good Vibes Magazine, Flurtsite and Connect with her on Facebook and Twitter@JulesAboutTown


  1. I loved this piece. It hit home for me.My husband is incarcerated in a Hawaii Jail right now.Since hes been incarcerated he has seen the jail psychiatrist.The psychiatrist diagnosed him with the early onset of Alzheimers.My husband is 54 and his long term memory is just about gone.We have three grandchildren he cared for 2 years ago for approximately three months and he does not even remember there names.His short term memory seems to be still in tact and he can still take care of his hygenic needs.He has court on July 24th 2012. His crimes were not violent nor involved drugs , alcohol or sexual abuse.They were theft crimes.The reason for his incarceration was due to probation violations with the crimes he committed.He has violations both in California and Hawaii. He has been dealing with the long term memory loss for a long time.More than five years. I think some of his reasoning skills may have been faulty when committing the crimes he committed.He would reason things he had done by saying he did them to protect me or try and make life better for me or something to that effect. He never wanted me to know that he was suffering memory loss so he would just say oh yes I remember that even though he did not remember it just to make it look like he was fine.When all the time hes been suffering. And until now he never wanted to show me the real him, the weak side of him.Now hes accepting it for what it is. I would never say he should not be punished for what he did but in light of his having this awful disease should not the courts be more sensitive to the families of these inmates and give them the opportunity to take care of there loved ones themselves instead of sticking them behind bars and allowing someone who may have committed murder to take care of them?Hopefully my husband will not have to suffer any more time in jail and be returned to probation as these violations were due to his inability to understand what probation in both states actually meant at the time of sentencing.But again I loved this article thank you

  2. spidaman3 says:

    This is a great piece Julie. People need to be reminded that criminals are in the end human beings.

  3. Justin Cascio says:

    My God, we need each other so much. We really are all we have.

  4. My Mother is 63 and at the end stages of early onset dementia. I can not imagine going through this alone and it is one of my biggest fears. We are afraid my mother will be alone when she dies but she has been with us during her entire illness, I can not imagine her alone. It breaks my heart.

  5. I cried when I read the piece. Especially when I got to this quote, which in my humble opinion, sums up the power of the Gold Coats Program: (quoted from the NYT) Mr. Cañas said: “I didn’t have any feelings about other people. I mean, in that way, I was a predator.” Now, he said, “I’m a protector.”

  6. Tom Matlack says:

    Julie what an amazing piece. THANK YOU.

    Yes, when I read this piece it felt like just a little window into how in this one little way we are allowing men to be human who have been long forgotten. My exposure to the penal system has been so moving, shocking, frankly horrifying that seeing human compassion show up in this way moves me to tears.


  1. […] I’ve also been writing a bit for The Good Men Project, such as this piece, about Birth Control being a man’s issue too, and this piece about Aging Prison Inmates with Dementia. […]

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