Resident choice improves dementia care, experts say

Care providers need to offer residents with dementia meaningful roles in creating their own care plans, experts advised Monday at the Pioneer Network Conference in Rosemont, IL. Too often they are missing opportunities to help the individuals — and improve their own caregiving work — the experts emphasized.

Creating training and educational programs that focus on the well-being of the resident with dementia, rather than the disease itself, is the main component of “The Dialogue Project.” It is a method of involving care providers, family members and the residents themselves in the dementia care planning process. 

By including dementia residents' own goals and opinions, caregivers can help destigmatize the disease and avoid “reactionary” approaches to care like antipsychotics, said G. Allen Power, M.D., the author of “Dementia Beyond Drugs” and a professor of medicine at the University of Rochester.

“I think the things that make people living with dementia angry, sad and anxious, are the same things that make us angry, sad and anxious,” Power said. “There are just communication issues layered on top of it.”

Power presented what he calls the main building blocks of well-being: identity, connectedness, joy, autonomy, security, meaning and growth. By tapping into these components, care providers can “decode” what's distressing a resident with Alzheimer's, and offer them more opportunities to influence their own care, Power said.

The training and education involved with the Dialogue Project often take twice the time to deliver half of the content of traditional training, said Chief Learning Officer of the Alzheimer's Resource Center Jennifer Carson, Ph.D. Dialogue education includes hands-on learning activities that incorporate visual, auditory and kinesthetic learning, and chances for participants to share their opinions and knowledge.

Carson and Jennifer Terray, the assistant director of nursing at the Alzheimer's Resource Center, cited leadership retreats and daily huddles within the Center's neighborhoods as some of the most powerful tools in the Dialogue Project's toolkit. In the huddles residents can reflect and give suggestions about the care they receive, along with adviser teams made up of their families, direct care providers and facility leadership.

The huddles often produce facility-specific goals that are “cultivated organically,” Terray said, rather than come from facility management. Examples of goals created by the neighborhood huddles included creating outdoor spaces, establishing dedicated care staff for each neighborhood and honoring the residents' wishes relating to their daily care schedules.

The Pioneer Conference continues through Wednesday.