Supported living for persons with brain injury: Addressing an aging population

A traumatic brain injury (TBI) can happen to anyone at any time, completely unexpectedly. A professional linebacker suffers a debilitating concussion on the playing field. A civilian contractor serving in Afghanistan rolls over an improvised explosive device. A young woman on her way home from a late-night shift is hit head-on by a drunk driver. The Centers for Disease Control and Prevention estimates that every year 1.7 million Americans sustain TBIs. And that figure is even larger when other types of acquired brain injuries, such as cardiac arrest, aneurysm or stroke are factored in. While many are able to return to home, community and vocational pursuits, hundreds of thousands of individuals continue to experience challenges from the brain injury and require 24-hour life-long support.

As long as these individuals are medically stable and have access to funding, such as worker’s compensation or a financial settlement—adults with brain injuries may reside in a supported-living facility indefinitely. The goal of most facilities that care for people with acquired brain injuries is to ensure they lead healthy, meaningful lives. As such, supported-living facilities attempt to integrate the individual into the community as much as possible and provide specialized care and support in the least restrictive way possible.

Treatment and care for people with acquired brain injuries requires a personalized, evidence-based and multidisciplinary approach that is guided by each person’s needs and goals. To that end, rehabilitation professionals, technicians and nurses monitor the person’s day-to-day health, and case managers work with families, healthcare providers, insurance companies and the person to design a customized program of life-long support.

But facilities offering LTC programs for individuals with acquired brain injuries are finding themselves in a new situation: an aging population that is more expensive and clinically challenging with regard to medical care. Many residents of LTC facilities experienced their brain injury as young adults so it is not uncommon for these individuals to stay in a facility for multiple decades. These persons, who are faced with the cognitive, behavioral and physical challenges associated with their injury, are aging and many now face a growing list of geriatric conditions.

THE CHALLENGE OF AGING WITH TBI

Developing customized living plans means case managers and facility administrators need to regularly review the treatment and residential programs to assess needs of the person and ensure appropriate care delivery. With an aging population, those needs are constantly changing and many persons who require life-long support have or will experience significant medical challenges and rely more heavily on the services of nursing staff.

Aging individuals suffering from brain injuries may experience advanced functional losses, such as mobility, strength, fatigue, memory, problem-solving and a greater difficulty with vision and hearing. As bones and muscles weaken, balance can worsen, making it harder to move about safely. Falls are increasingly a concern not only for the risk of breaks and infection but for the threat of another head injury. Of course, with age comes the increased chance of developing serious medical conditions, such as cancer and diabetes. And age doesn’t only compound chronic diseases but appears to exacerbate degenerative conditions. Several recent studies1 seem to indicate a correlation between brain injury and accelerated cognitive decline, including Parkinson’s, early-onset Alzheimer’s and dementia.

While the jury is out on exactly what role a sustained brain injury plays in these scenarios, one thing is imminently clear: All these challenges place a greater demand on nursing staff who may find that they are transitioning to a far more active role in the day-to-day well-being of the persons in their long-term support programs.

EDEN: A MODEL OF SUCCESS

More and more LTC facility administrators are adopting programs and values from successful business models, such as the Eden Alternative, founded in 1991 by Dr. William Thomas, a Harvard-educated physician and board-certified geriatrician. While the pervasive model of many LTC facilities treats aging as a time of decline, the Eden Alternative approaches aging as another stage in human development with opportunities for growth and learning. Facilities that have taken on this approach are seeking to establish stable, supportive environments where an individual can learn and live with purpose. To that end, they advocate the integration of a person’s social, emotional, cognitive and physical experiences.

Data tracking shows that treating the whole person in a holistic fashion leads to a precipitous drop in the person’s aggression toward staff as well as a host of other negative physical behaviors. Additionally, this method of treatment decreases the use of mood-stabilizing and psychotropic drugs, risk of infections and the need for assistive equipment such as bed rails. It also leads to an increase in self-esteem and relationship building for individuals and their caregivers.

PROGRAM DELIVERY SOLUTIONS

Cutting-edge organizations that are effectively meeting the challenges of caring for an aging population with acquired brain injuries are implementing strategies that promote good health and quality of life by actively engaging both mind and body. 

One such approach is the fostering of independence by establishing a home care environment. This approach represents a radical shift in institutionalized powerlessness that has been prevalent in traditional nursing homes. By including individuals in decision-making, they are empowered to have a say in the hiring of employees, to set house rules, to take responsibility for the care and maintenance of the facility through housekeeping schedules, gardening and beautification projects, to choose their preferred activities and to manage their lives in concert with staff.

This strategy allows for the development of autonomy and self-enrichment, and promotes the concept of living in a home, not a treatment facility. It also requires the retraining of staff to remember that they are there to support each person as an individual and not to impose unnecessary rigid guidelines and structures. This change represents a return to a service model where staff members are in the employ of their patients/clientele and not their wardens.

Another health strategy is to engage the individual in physical activities. As individuals age into their 50s, their activity levels begin to drop off. Contrary to the popular idea that bed rest is good for a person with challenges, inactivity in fact speeds the aging process and has been linked to the damage of organ systems, metabolic changes and other complications, including early-onset dementia. To stave off some of the damaging effects of age, supported living organizations are providing programs that go beyond stretching and walking, and include a balance of aerobic and strength-training as well as targeted physical therapy. The benefits of exercise are two-fold. Not only does it help with cognition and improved memory, it helps alleviate depression, a pervasive problem among many in traditional life-long support facilities.

Activities needn’t be limited to exercise regimens. Recreational and social activities, such as trips to the library, symphony or even a local coffee shop, also ward against depression and loneliness, bolster vitality, and help individuals connect with the communities in which they live, work and play. Building community partnerships and expanding opportunities for social and civic engagement through volunteer work are other health strategies utilized by case managers to engage an aging population.

CONCLUSION

For many people with acquired brain injuries, life-long care is not necessarily rehabilitation; it is supported living. As such, administrators and staff must continually assess how an individual is aging and devise new strategies and programs to ensure the highest quality of life. Leading-edge life-long support organizations are adopting person-directed values and health strategies and are part of a growing culture change movement that’s reshaping residential support services. This shift from institutional provider-driven models to a person-driven model supports quality care and purposeful living, and is leading to a better quality of life for the individuals served.

Cindy Davie is Vice President for organizational development with Pate Rehabilitation. Davie is a licensed speech-language pathologist with more than 30 years of experience in the field of brain injury rehabilitation. She has led cognitive rehabilitation and functional integration training. Davie also created a post-acute residential rehab program for adolescents with acquired brain injury. She is a medical rehabilitation surveyor for the Commission on Accreditation of Rehabilitation Facilities (CARF) and has more than 15 years of experience in leadership training and development with healthcare facilities. Contact Davie at cdavie@paterehab.com.

References:

  1. https://www.ncbi.nlm.nih.gov/pubmed/20504161; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919698/; https://www.ucsf.edu/news/2011/07/10279/traumatic-brain-injury-more-doubles-dementia-risk; https://www.indkc.org/neurodegenerative.html

Topics: Clinical , Executive Leadership , Uncategorized