Comfort focus improves lives of those with advanced dementia

When it comes to caring for those with advanced dementia, changing to a person-centered approach that focuses on resident comfort can be difficult for entrenched professional caregivers and family members. Skilled nursing facilities and their staff members—and, most importantly, residents and their families—can reap satisfaction and many other rewards from doing so, however.

That’s been the experience of Tena Alonzo, and she shared the knowledge she has gained as executive vice president for education and research at the Beatitudes Campus, a non-profit continuing care retirement community in Phoenix, in a presentation at a Sept. 8 Institute of Medicine (IOM) workshop in Washington, DC, that brought together dementia experts, federal agency staff members and others to discuss innovative care practices. Alonzo discussed Comfort Matters (formerly Comfort First), an initiative for those with Alzheimer’s disease and other dementias that Beatitudes started developing in 1998. Alonzo directs the program at Beatitudes, and use of the model has since spread throughout the United States and to other countries, although widespread implementation challenges remain.

Comfort Matters, Alonzo said, starts with the beliefs that comfort benefits people with dementia, that those with dementia are experts on their own personal comfort, that people with dementia communicate comfort and discomfort through their actions, that everyone who has dementia can be comfortable, and that the goal of comfort should not be reserved for end-of-life circumstances. The model allows residents to sleep as they wish; to eat what they enjoy when they want to eat, regardless of dietary concerns; to perform activities of daily living on their own terms; and to be engaged as they like.

The model, she added, “recogniz[es] that this is a terminal condition, and of course this is a time when you really should enjoy whatever piece of life gives you pleasure.”

Deceptively simple

Beatitudes tested Comfort Matters in its Vermilion Cliffs area, a secure neighborhood for those with advanced dementia located in its center for skilled nursing, rehabilitation and post-acute care. The backbone of the approach is “deceptively simple,” Alonzo said: “We must anticipate needs; we need to know who the person is; we need to practice person-directedness, which means we need to listen as they respond to us in whatever way that they can, to identify whether or not something suits them; and we must do it within the framework of an empowered team that can, at the moment, change direction and do something different to create comfort for any particular individual.”

Those empowered teams are key to changing a community’s culture to one that embraces a “comfort as primary goal” philosophy, she added. Such interdisciplinary teams, led by a nurse and a social worker, can meet weekly to discuss what needs to be modified and how to do so. Policies and procedures related to activities, bathing, bowel and bladder management, call light use, comfort care, dining, dressing and grooming, healthcare decisions, mobility and safety, pain management and self-protectedness/rejection of care should support individuality, capitalize on residents’ strengths and minimize their challenges, Alonzo said.

The process, she notes, is based on quality assurance and performance improvement (QAPI). Comfort Matters has identified about 120 competencies to help staff members operationalize the approach, some of which apply to several disciplines of the interdisciplinary team. Collectively, the competencies affect every role in the nursing home—for instance, physicians and those working in the housekeeping, maintenance and dietary areas—not just nursing staff and aides.

“We have to help staff understand that comfort does not just matter at the end of life. It matters all the time and in everything, from how we would help someone rise in the morning to how we help them go to bed at night,” Alonzo said.

Impactful outcomes

Beatitudes Campus - Evolution of Care ModelsShe detailed “impactful” improvements in quality of life for residents and their families, quality of work life for staff members and financial benefits for the Beatitudes Campus stemming from the implementation of Comfort Matters. Specifically, she said, the focus on mind, body and spirit rather than just medical needs now means that physical restraints, therapeutic diets and supplements no longer are used; antipsychotic and anxiolytic medication use is minimal (see chart, “Medication Use Rates, August 2014,” by clicking on photo, upper left); weight loss among residents is rare; and residents do not exhibit sundown symptoms and are less likely to resist care. (See table, “Beatitudes Campus – Evolution of Care Models,” here or by clicking on photo, upper left.)

Additional program outcomes:

  • The average number of medications given per person is less than five. “What this does is, it affords us the opportunity to really focus on dining,” Alonzo said. “People enjoy eating, and when we’re giving fewer medications, people seem to have better appetites. Also, we spend less time focused on the medical nature of things, which allows us more opportunity for engagement.” Fewer medications also means fewer skin breakdowns, she added, which reduces the need for licensed staff members.
  • No sedatives are given.
  • 87 percent of residents use the toilet, “which reduces the need for briefs and is actually just a dignified experience, and most of us would want it,” Alonzo said.
  • The rate of unavoidable weight loss annually is 1 percent.
  • Hospital utilization is at less than 3 percent.
  • Emergency department utilization is less than 2 percent.
  • Staff turnover has been eliminated, and families are more satisfied. “The happiest folks on the entire campus are the surrogate decision-makers and families of the people who live on Vermilion Cliffs,” Alonzo said. In nursing homes operating under a traditional model, she added, those caring for residents with advanced dementia, and their families, usually “are the most upset” compared with other caregivers and family members. Staff members working on Vermilion Cliffs, however, feel empowered and, therefore, derive more satisfaction from their work, Alonzo said.
  • Costs have shown no appreciable increase and in some cases have decreased.
  • The waiting list for admission exceeds 20 people, including people wishing to relocate from other places in the United States and even other countries.
  • Federal and state survey results have been excellent.
  • The program has received national and international recognition.

Pilot project in New York

A 30-month pilot project in New York City has been studying effective ways to implement the Comfort Matters approach in three nursing homes there, Ann Wyatt, coordinator of the Palliative Care Project for the New York City Chapter of the Alzheimer’s Association, shared with IOM meeting attendees. Three hospices also are involved in the test.

The Minimum Data Set (MDS) 3.0 is one of the methods being used to evaluate the success of implementation, she said. “We used several of the quality measures, but we also identified certain core questions in the MDS that we thought would be valuable to follow.”

The four items used from the MDS, according to Wyatt, are rejection of care, physical/behavioral symptoms directed to others, verbal behavioral symptoms directed to others, and other behavioral symptoms. “Our mantra on this is, any time you’re in a care plan meeting and any of these are checked, your responsibility is to dig to see if you can find out what’s going on. The idea that this is in MDS, that it’s a tool that you have available and you don’t use it? That’s not OK. If you see this checked off, you have a job to do. This is also a gorgeous QAPI opportunity.”

The pilot project has revealed deficiencies in care at all three nursing homes, “many of them on a daily basis,” Wyatt said. “What it really underscored for me was, if you don’t make those adaptations, you’re not delivering good care.”

Communication is key to addressing those deficiencies, she added. “The organizational change in Comfort Matters, it’s certainly about the specific practices, but it’s about the communication back and forth. I’m talking about among the disciplines, I’m talking about with the nursing assistants, and I’m also talking about all three shifts. That is a huge issue to overcome. You cannot talk about these Comfort Matters if don’t know whether somebody slept last night or if you don’t know much about why they did or why they didn’t. You can’t make changes if you haven’t explained it and discussed it as thoroughly with the night shift as you have with the day shift. It just doesn’t work.”

The New York City chapter of the Alzheimer’s Association, with assistance from Comfort Matters, will produce an implementation guide for nursing homes in that metropolitan area, she said. Communities around the country may pursue customizable Comfort Matters training at their individual communities or at the Beatitudes Campus, and Comfort Matters faculty members are available for consultation regarding managing organizational change, facility design, operation and management and additional topics. The core curriculum will be online soon.

The Board of Health Care Services of the independent IOM convened the Sept. 8 meeting on behalf of the U.S. Department of Health and Human Services and the Advisory Council on Alzheimer’s Research, Care and Services. Experts at the meeting also discussed training and care innovations related to those with advanced dementia receiving services at home or in the community, hospice, hospital or emergency department.

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Topics: Alzheimer's/Dementia , Articles , Clinical , Executive Leadership , Nutrition