Alzheimer's or other types of memory illness often affect speech, body language, and the thought process; the brain appears to be short circuited as the illness worsens, leaving the individual unable to express everyday needs and wants to those caring for them.
The Nevada Positive Behavioral Interventions and Supports (PBIS) Technical Assistance Center, located at the University of Nevada Reno, received a grant in 2015 to develop a program to help maintain quality of life as the person ages with dementia. Funded by the Nevada Division of Aging and Disability Services, the Nevada PBIS program works to help families and caregivers better understand, communicate, and care for those with complex behaviors.
Project Director and Principal Investigator, Ashley Greenwald, Ph.D., BCBA, explained the PBIS team spent many months researching applications of applied behavior analysis and positive behavior support for people living with neurocognitive disorders including Alzheimer's disease. In developing the program, Greenwald said project researchers visited assisted living and memory care facilities who provide services to the elderly, their families and careigivers. From their research a 10-hour training curriculum was created that includes three workshops, five group classes and individual consultations.
Families and caregivers are initially invited in the home where the dementia patient lives, so researchers can learn about the home environment, their working career, likes and dislikes, and core values. The goal is to teach those caring for one with dementia how to communicate on a daily basis, manage behaviors that are counterproductive, and understand what is being communicated.
"The first class focuses almost exclusively on the emotional safety and wellbeing of the caregiver so that they can engage in effective "care partnering", something that we stress in the classes through our model of person centered planning focusing around the individuals strengths. We are always taking a strengths-based approach in our work," Greenwald said.
"We use mindfulness activities to draw awareness to the present moment, and gently explore what thoughts, feelings, and emotions serve as barriers to value-based living in caring for their loved ones. This first class sets the tone for the rest of our behavior support work and support plans that we create with and for the individual living with dementia."
Positive Behavior Support Training is well planned and scientific. Families are trained in principles of behavior that is person centered and evidence-based to reduce intrusive services and interventions, to support those with challenging behaviors, and increase independence. The goal is to help sustain a patient living environment, facilitate communication, and independence in activities of daily living, while the caregivers learn strategies and mindfulness in understanding atypical behaviors, and ability to communicate as a caregiver.
Caring for a loved one with dementia is not an easy task. Families learn techniques in workshop sessions, accompanied with in-home consultations, functional behavior support plans and skills for interventions. While caregivers are learning tasks, researchers continuously gather data, collecting it for assessment. "We take an individual function-based approach to analyzing behavior, which makes our program so unique."
Greenwald says the research team has learned many things from the workshops. For instance, one wife was upset because the husband would constantly take the stove apart. After learning his occupation was an auto mechanic, researchers realized he was tinkering with parts as he did when he worked on automobiles. The team recommended a place be set up in the garage where he could use his hands fixing things.
Understanding what an Alzheimer's patient is trying to say often decreases the level of agitation the person is feeling, while caregivers are stressed and emotional trying to care for a loved one that no longer resembles the person they once were. The curriculum teaches families to engage in mindful behavior, rather than reacting to what they think is being communicated.
The goal is to design supportive environments, such as routine, meaningful activities, and hobbies. The home must also be modified to enhance safety, direct attention and increase socialization. People with dementia often find comfort in memories, such as looking at family photos, listening to music, remembering family members and friends. Physical activity is important for functioning, improving activities of daily living and supporting positive behavior.
The PBIS program is new to northern Nevada, but researchers are excited about creating positive outcomes for families facing a difficult and unique journey. "There is currently no cure for dementia related illnesses, but there are tasks we can learn to make that journey easier for people," Greenwald explained.