According to Silverman, Flaherty and Tobin (2006), …”[I]t is a better understanding of the psychology of dementia – how a person thinks, feels, communicates, compensates, and responds to change, to emotion, to love – which may bring some of the biggest breakthroughs in treatment….”
A parent, sibling or spouse has been just diagnosed with Alzheimer’s Disease or a related dementia (ADRD). In a somewhat perfect world, family members would receive an orientation to the disease, and learn how it affects their loved one’s behavior. They would quickly begin to learn how to deliver daily care and maintain best function. They would find out how to prevent many common, difficult behaviors, and address those that arise with some consistently applied, fairly easy-to-use psychosocial interventions.
The entire family and all other members of the care team in this somewhat perfect world would receive training and ongoing support to learn and apply Habilitation Therapy (HT), accepted as the best standard of care and psychosocial intervention by the Alzheimer’s Association (Massachusetts/New Hampshire Chapter), where it was first developed in the 1990s. (Alzheimer’s Association, Massachusetts/New Hampshire Chapter, 2011.) HT is considered the best practice in ADRD day-to-day care, in creating good environments for ADRD patients, and within all their relationships and activities. Though powerful and effective, HT is fairly simple to learn; even a child can understand and apply aspects of it.
So, what is this seemingly magical thing called Habilitation Therapy? Well, it’s not magic, but a comprehensive behavioral approach to caring for people with dementia. It focuses not on what the person has lost due to the illness, but on his or her remaining abilities. HT creates and maintains positive emotional states through the course of each day. The dementia patient’s capabilities, independence and morale are consistently engaged to produce a state of psychological well-being. In this way, difficult symptoms can be reduced or eliminated, even as the illness progresses.
Habilitation Therapy also benefits the patient’s family, friends and professional caregivers. The ability to enjoy time together and to share a relationship, activities, and feelings with a person with dementia can be uplifting for everyone involved. HT can reduce much of the stress and workload involved in living with Alzheimer’s Disease and other related dementias.
Note that this is “Habilitation Therapy,” not “Rehabilitation Therapy” (Alzheimer’s Association, Massachusetts/New Hampshire Chapter.) Rehabilitation returns patients to earlier, higher levels of functioning. There is no known rehabilitation for ADRD. Habilitation focuses on optimizing and extending what is possible now, not what was possible in the past.
The very best natural caregivers tend to spontaneously develop similar approaches to HT. Usually, though, they are unable to articulate why they do what they do, teach others except through example, or discover by themselves the totality of what Habilitation could teach. It can take months or years for talented caregivers to uncover just some of the techniques that could have been taught to them in a few hours through Habilitation Therapy training. Though it makes logical sense to provide such training on a regular, widespread basis, it is far from the norm.
A deeper understanding of Habilitation Therapy starts by looking at the way the brain is affected through dementia, and how large a presence emotions represent. This will be explored further in Part 2.
In this somewhat perfect world, medications such as antipsychotics would not be needed to manage the illness’s behaviors. (An antidepressant might be prescribed to help support positive mood and functioning, however.) Special dementia-specific behavioral methods — plus interventions such as gentle massage, music and art therapy, and wellness activities — would help the dementia patient be peaceful and happy, functioning best with what abilities still remain even as they decline. Caregivers (called “care partners”) would be happier and more peaceful, too.
People with ADRD living in this somewhat perfect world would be able to maintain as much independence as they safely could through an appropriately organized physical environment. Daily, they would experience a variety of emotions, including feeling safe, cared about, respected, purposeful and valued. Such positive emotional experiences bring them pleasure, comfort, laughter, happiness and even joy.
Nearly to the very end, they would share positive relationships and emotional experiences with their care partners – both family and professional – who experience time spent together as a close and profound (though not necessarily easy) experience. Most ADRD patients would live their final days in their homes, or would be stay living at home significantly longer due to this type of compassionate daily care. (Mittleman, Ferris, Shulman, Steinberg, and Levin, XXXX.) If and when they found themselves living in a facility, the entire staff, from janitors to nurses to administrative staff, would be fluent in the use of Habilitation Therapy.
Even in this somewhat perfect world, there would still be many, many tasks for care partners to perform every day. There would still be an emotional, physical and financial cost to delivering all the care necessary. The disease would still remain progressive, and the patient would continue to decline. Family and friends would still grieve as their loved one with dementia became more and more dependent and eventually died. But grief and loss would not be the only feelings those left behind would hold in their hearts and memories. There would be the close, enjoyable times that existed through much of the course of the disease.
This somewhat perfect world already exists in small pockets. A good or better quality of life could exist right now for many, many ADRD patients, their families, friends, and professional caregivers. One of the huge missing factors for the further manifestation of this somewhat perfect world is a lack of widespread awareness, training and adoption of Habilitation Therapy.
Silverman, N. M., Flaherty, G., Tobin, T. S. (March 2006). Dementia And Wandering Behavior: Concern for the Lost Elder. New York: Springer, p. 24.
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (August 2, 2011.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum [Training Course]. (Lawrence, MA)
Mittelman M.S., Ferris S.H., Shulman E., Steinberg G., Levin B. (1996). “A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial.” Journal of the American Medical Association. Dec 4; 276(21):1725-31.
Alzheimer’s Association, Massachusetts/New Hampshire Chapter. (n.d.) Caring for People with Alzheimer’s Disease: A Habilitation Training Curriculum. (Watertown, MA). p. 62.