A study(1) in 69 care homes in the United Kingdom affirms principles that Action Pact’s PersonFirst® train-the-trainer program has advanced for 20 years – that person-centered care with meaningful social interaction as simple as daily chats can improve quality of life for people living with dementia and enhance their relationships with caregivers.
Published Feb. 6, 2018 in PLOS Medicine, the study found improvements in agitation, pain, and neuropsychiatric symptoms(2) along with a nearly 20 percent increase in positive care interactions with staff. People with moderately severe dementia benefited the most.
Residents received one hour of social interaction per week with staff trained to learn their individual abilities and desires, and to question elders and their family members about the care received – as are staff trained in PersonFirst®.
Improvements were comparable to those achieved with antipsychotic drugs for agitation, and greater than with medication for neuropsychiatric symptoms.
Costs of the person-centered approach were found to be lower than “treatment as usual” when delivered through a readily-implemented, “champion” model that enables care staff to take ownership of the process with limited supervision from external therapists.
Similarities in the PersonFirst® Approach
PersonFirst® is just such a model, says its creator and Action Pact consultant, Megan Hannan. Grounded in the teachings of the late dementia expert Thomas Kitwood, it trains staff to recognize skills normally retained by residents living with severe dementia, and how to interact with them in support of personhood.
The focus is on building relationships and creating community with elders, their family members, and the organization’s entire staff. Initially, 25 of the organization’s employees are trained in PersonFirst®. They in turn train all remaining staff and initiate a process for training new employee to ensure continuation of PersonFirst® indefinitely.
Though Hannan lacks hard data on improvements in agitation and neuropsychiatric symptoms, anecdotal accounts received from staff members Hannan has trained over the years reflect the outcomes in the U.K. study.
“Right from the start, staff reported that folks who rarely spoke or spoke in gibberish would speak coherently when they were asked about things they know, like their kids, a pet, or their career as a teacher,” she says.
Residents with dementia also shared about themselves when participating in Community Circles(3) commonly held in PersonFirst® households. Staff almost always come away from the circle having learned something new about the resident, says Hannan.
The new information is shared with other staff and used to stimulate conversations with residents. The resulting one-on-one chats plus Community Circles held several times a week give elders more than the hour of weekly social interaction provided for in the U.K. study, says Hannan.
“Sad isn’t it, to think that meaningful interaction for only one hour a week could actually be a kind of prescription for good life,” says Hannan. Yet elders living with dementia often receive much less than that in conventional care settings.
She recalls, early in her career, observing a nursing home resident who was awakened, fed breakfast, and left to sit alone in a hallway for three hours without human interaction. Finally, someone came to “take him” to lunch, but even then “the interaction was perfunctory and had nothing to do with him or with any relationship he may have had with those serving him,” says Hannan.
Later in the day when the man was included and treated with dignity in a Community Circle, he told a “hilarious” story about cooking a huge turkey for Thanksgiving. Left to cool as the family gathered in another room, the turkey was discovered and devoured by the dog before the family knew what was happening.
“This story came out of a person who previously was basically ignored as a person,” says Hannan. As the story was retold among staff and they began to ask the man about it, both the quality and quantity of meaningful interactions with him increased.
Lowering Antipsychotic Drug Use
Such interactions with residents living with dementia are much easier when they are not lost in the fog of antipsychotic medications, says Hannan.
“There are financial costs of these medications to the organization as well as personal health costs to the person taking antipsychotics – for example, increased confusion and sleeping all of the time,” she says.
Though the study found no decrease in antipsychotic drug use (already low among the study’s participants), the authors note that the prospect for lowering use through person-centered care is borne out in previous studies.
“I think the potential for lowering or stopping antipsychotic drugs is huge,” says Hannan. Several of her PersonFirst® trainees have reported lower use of the medications. At Perham Living, for example, use of psychotropics and nutritional supplements fell just months after implementing PersonFirst® and the Household Model in 2005.
Authors of the U.K. study notes that some antipsychotic drugs “are associated with severe safety concerns including increased cognitive decline, stroke, and death, particularly when used in the long term.”
The findings of their study “are particularly favourable when compared with those of trials of antipsychotic medications, which show only very modest benefits,” they conclude.
(1) “Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial”
(2) Twelve neuropsychiatric disturbances common in dementia were evaluated: delusions, hallucinations, agitation, dysphoria, anxiety, apathy, irritability, euphoria, disinhibition, aberrant motor behavior, night-time behavior disturbances, and appetite and eating abnormalities.
(3) In Community Circles, residents with dementia sit in a circle with staff and family members. An open-ended question is posed to the group and each resident, sometimes with encouragement and help from staff or family members, answers the question or comments on the topic. In this way, staff and residents get to know each other better and build community with the side benefit of gaining a better understanding about how best to serve the residents in their daily lives.