By John Wilson, PhD, and Sharen Barboza, PhD
Posted on September 29, 2010 – Although it is common knowledge that the incidence and prevalence of dementia is rising, it is not easy to grasp the implications. Rising rates of dementia will impact correctional health care systems just as much as our national health care resources – and probably more so. Forty years ago, the median age in the United States was just under 28 years. Today, the median age is 38. In another 40 years, 1 in 5 Americans will be over the age of 65, and the incidence of dementia is expected to double. Inside the walls of our jails and prisons, these same forces are at work. Inmates over the age of 54 are the fastest growing incarcerated age group. Three-strikes laws and other legislation have lengthened sentences. Over the last quarter century, the number of inmates doing life sentences has increased four-fold. One out of 11 inmates is now doing life, many of them without possibility of parole. More and more inmates will be aging under our care. Currently, a vast number of middle-aged inmates will remain incarcerated into late life. These are the inmates most vulnerable to dementia. After age 60, the risk of developing dementia doubles every five years.
The prevalence of dementia may be more frequent in corrections than in the community. Base rates for serious mental disorders are two to four times greater in corrections than in the community. It is unlikely dementia will be an exception. Protective factors such as a healthy lifestyle, active engagement in challenging tasks, social integration, and a sense of meaning and purpose are rare among inmates. Risk factors including traumatic brain injury, substance abuse, hypertension and diabetes are common. Some correctional gerontologists have suggested that inmates grow physiologically older faster than people in the community due to high-risk lifestyles and poor health care prior to incarceration. This largely untested accelerated aging model hypothesizes that the average inmate has the same burden of disease and functional impairment as someone 10 years older in the community.
Dementia appears to be a hidden, but looming problem in our institutions. If the rate of dementia in corrections is twice that in the community, by 2050 we will be housing over a quarter million inmates with dementia. The morbidity and mortality associated with dementia cannot be overstated. On average, individuals with dementia suffer from two other chronic medical conditions and live less than six years after first being diagnosed with dementia. Progressive deterioration in functioning, behavioral and psychiatric problems, treatment complications, adverse medication reactions, and the eventual need for 24-hour nursing care are the norm. While research is producing exciting findings regarding the pathways along which dementia develops, we are still a long way from developing vaccines or effective treatments to stop this illness.
For the inmate, the loss of memory and other cognitive problems associated with dementia may be the most pressing concerns. For the correctional staff, the inmate’s medical, behavioral and psychiatric problems may be the most concerning. Compliance with medical and mental health treatment, often impaired to begin with, is likely to deteriorate as dementia progresses. Agitation, wandering, aggression, depression, impulsivity, catastrophic emotional reactions, paranoia, delusions, hallucinations, self-neglect and incontinence commonly occur at some point in the course of dementia. These are critical issues in any setting, but in correctional environments they can be particularly problematic.
What steps can we take?
First, we need to improve early detection. Early signs of dementia include regular forgetfulness, confusion, indecisiveness, loss of judgment, disorientation to time or place, wandering, loss of initiative, new handwriting problems, changes in mood and personality, and difficulty completing once-familiar tasks. Typically, these signs go undetected until dementia has substantially progressed, but can have deleterious effects for the inmate in terms of daily functioning and overall health. Screening for early signs should be a routine aspect of clinic appointments, but detecting dementia early also requires obtaining a good history. Because insight and memory are impaired with dementia, inmate self-report is unlikely to be the best source of information. Consulting with correctional officers, other staff and family members can be crucial. They can identify personality changes, embarrassing behaviors (e.g., self-neglect, incontinence) and impairments that represent unmistakable changes from the inmate’s previous levels of functioning. Evaluating the inmate for reversible causes of cognitive impairment and referring the inmate for formal evaluation of cognitive functioning can be helpful. Making the diagnosis requires multidisciplinary collaboration.
Second, once dementia is diagnosed, the inmate needs to be told. Disclosing the diagnosis requires planning, multidisciplinary collaboration and sensitivity. When possible, family members should be included in the disclosure process. We need to respect the inmate’s need to know what is wrong and what is likely to happen. Disclosure and acceptance of the diagnosis will be a process, not an event, for the inmate. Staff also need to know, because loss of functioning in most dementias is not reversible. Treatment cannot restore previous levels of functioning and staff expectations need to be realistic. Focused treatment and management interventions need to have real meaning for the inmate’s experience and quality of life. As with the inmate, disclosure and acceptance of the diagnosis for staff will likely be a process, not an event. Third, we need to structure the environment for success by reducing the potential for confusion and ambiguity. Environments should be well lit and quiet; use contrasting colors to delineate bathrooms; be free of mirrors; and signs should be simple including pictures as well as words. Hearing aids and eyeglasses can be critical when needed. When perceptual acuity is diminished, inmates strain to make sense of things and often come up with misinterpretations. Reducing brain strain helps reduce dependency and risk for agitation. Clothing that is easy to get on and off also helps support an inmate’s functioning. There are three major reasons for incontinence among individuals with dementia: not knowing where the bathroom is, not being able to get clothing off, and not being able to control bodily functions. The first two can often be addressed through environmental interventions. Consistent daily routines, locked units, handrails and wheelchair accessible showers are also important. Structuring the environment for success will require collaborative planning among facility administrators and health care staff.
Fourth, in the absence of medical cures for dementia, we need to develop nonpharmacological interventions to support inmates’ highest levels of functioning. Behavioral interventions, relaxation training, support of specific skills, physical exercise, and some group and individual treatment interventions have shown positive effects. Aromatherapy, massage, music therapy, pet therapy and day programming have also demonstrated positive effects. While some of these latter interventions may be challenging to implement in corrections, they are important for physicians to consider and collaboratively work with security staff to implement when possible. Dementia requires multidisciplinary treatment.
Fifth, we need to train our staff. Research indicates that staff training has the greatest effect on dementia treatment outcomes. Much of the training is focused on communication. It is essential to treat inmates with dementia as adults, to take their perspective seriously, and to avoid trying to argue them out of delusions or confusion. A nonjudgmental perspective, patience, discipline and flexibility are also required. Demented inmates cannot be expected to remember or follow multi-step directions. Supporting the inmate’s sense of personal autonomy while keeping choices simple and manageable helps prevent confusion, shame, anger and agitation.
Most importantly, staff needs to remember that, for an inmate with dementia, life is always like coming into the middle of a movie. Inmates with dementia need to spend a lot of effort making sense of things as they go along. If staff can keep this perspective in mind, the inmate’s behavior will make sense and empathic and effective communication is more likely to occur.
The correctional system is already the largest provider of mental health services in the county. Very soon, we may also become the largest provider of skilled nursing and dementia services. Conservatively estimated, the annual price tag for treating a quarter million inmates with dementia will be over $18 billion in today’s dollars. We cannot afford to sit back and wait for the rising tide of dementia as we will not be able to afford the services these inmates will need if we do not prepare now through institutional planning, environmental modifications and staff training.
Dr. Barboza is a nationally recognized expert in correctional mental health services and the Director of Clinical Operations for MHM Services, Inc. Readers may contact her at sbarboza@mhm-services.com. Dr. Wilson is a Senior Clinical Operations Specialist for MHM Services where he ensures that community standards of care are provided to special need populations in jails and prisons. Readers may contact him at jwilson@mhm-services.com.
