On the first day of 2011, The New York Times published a front-page article about an innovative palliative care program for older adults with dementia based at Beatitudes Campus, a LeadingAge member in Phoenix, AZ.
The program put the comfort of residents with dementia above all else, even if that meant allowing residents to dine at 2 a.m., eat all the chocolate they wanted, or take an alcoholic “nip at night.”
Two years after that article first appeared, the Palliative Care for Advanced Dementia program—now called “Comfort First”—is spreading to New York City, thanks to the Alzheimer’s Association-New York City Chapter, 3 LeadingAge members and their hospice partners:
- Cobble Hill Health Center in Brooklyn.
- Isabella Geriatric Center in Manhattan.
- Jewish Home Lifecare in Manhattan.
Alzheimer’s Association Role
How did Comfort First show up 2,000 miles from home—and what went into making its cross-country leap a success?
The story begins with the Alzheimer’s Association’s New York City chapter, which has long been seeking ways to improve the way nursing homes care for people with dementia. That quest led to research, the establishment of a Nursing Home Task Force, the launch of an annual conference for local nursing homes, and the hiring of Ann Wyatt as the chapter’s residential care policy & strategy consultant. Wyatt was charged with bringing the chapter’s work with nursing homes to the next level.
Soon after arriving, Wyatt raised the possibility that the New York chapter might want to help New York nursing homes replicate Comfort First. Jed Levine, the chapter’s executive vice president and director of programs and services, says the chapter liked the Beatitudes’ approach because it focused on organizational changes that could be sustained over time.
“Our concern was that this could not just be a training program,” agrees Wyatt. “It really needed to be an implementation program. We wanted to embed process improvements in the nursing homes, not just train frontline staff.”
Wyatt made an early visit to Beatitudes Campus to take the Comfort First training and to confer with the program’s co-directors: Tena Alonzo, director of research at Beatitudes Campus, and Dr. Carol O. Long, principal at Capstone Healthcare.
Over the next year, the new partners designed a multi-pronged replication project with Levine serving as principle investigator. The New York City chapter, in the meantime, put together an impressive group of funders:
- United Hospital Fund.
- The Fan Fox and Leslie R. Samuels Foundation, Inc.
- The Mayday Fund.
- The Milbank Foundation for Rehabilitation.
- 1199SEIU Training & Employment Fund and The Greater New York Education Fund.
- The Caccappolo Family Foundation.
- Matthew Furman and Judy Hecker Furman.
- Daniel and Nancy Finke .
- The Alzheimer’s Association-New York City Chapter.
Research: An evaluation of the training program is at the center of the replication project and the key to spreading palliative care for advanced dementia to other nursing homes in the New York City region and beyond, says Long.
“Great programs have to have evidence-based foundations underneath them,” she says. “The research and evaluation component makes a program real, marketable and practical. Without that research, even the best programs will not be relevant to other organizations.”
The evaluation, which Long is co-directing with Dr. Ed Cisek, director of program evaluation at the New York City chapter, will span the first year of the 30-month project. Long, Cisek and other research partners will assess how the New York City training program has impacted:
- Organizational culture.
- Quality of care.
- Cost and use of medications.
- Operating and care costs. The LeadingAge Center for Applied Research is conducting this evaluation.
- Knowledge about advanced dementia and the beliefs, attitudes and perceptions of staff members.
Training: The training portion of the project began in Sept. 2012 with a 1-day meeting in New York City that introduced Comfort First to leaders from participating nursing homes and hospices as well as other regional stakeholders. A month later, a contingent of program champions from the chapter, and from each nursing home and hospice, traveled to Arizona for onsite training. Alonzo and Long returned to New York City in Nov. 2012 to train frontline and supervisory staff members who weren’t able to attend the Phoenix training. In Dec. 2013, the participants will gather again to focus on how they can spread Comfort First beyond the nursing units where they are currently piloting the training program.
Remote consultations: The New York City and Phoenix teams touch base regularly with their nursing home and hospice partners through remote consultations. These consultations might offer guidance on how to treat pain among nonverbal residents, design comfort-focused activities for people with dementia, or provide comfort foods as part of a liberalized diet.
“We tailor our consultations to the individual organization,” says Alonzo. “We recognize that each organization has its own way of doing things and will also have its own way of changing how things will be done.”
Webinars: The Phoenix and New York City teams are developing a series of interactive webinars that will be broadcast to each of the nursing homes. The first webinar, focusing on pain management, takes place this spring.
The Challenges of Distance
Frequent travel, telephone calls and use of technology like webinars is helping to close the 2,000-mile distance that separates Phoenix and New York City. In addition, the Phoenix team credits Wyatt and Levine with making the New York City replication possible through their local connections and their weekly contact with nursing homes and hospice organizations.
“The Alzheimer’s Association has strong relationships with the nursing homes and the hospices in New York City,” says Long. “So it has been instrumental in building vital partnerships. In addition, Ann is transferring our vision for this program to these organizations through her ‘boots on the ground’ involvement.”
Distance has actually brought a new and beneficial formality to the training program, says Alonzo.
“The webinars must be scheduled,” she says. “We can’t do long-distance consultation on the fly. As a result, some very thoughtful consideration goes into designing the ways we work together. I like that very much.”
Pleased with Progress
Alonzo, Long, Levine and Wyatt are pleased with the progress that their nursing home and hospice partners have made so far in adopting the Comfort First program.
“The work that we do is sacred,” says Alonzo. “It is so exciting to know that we are not alone and that other people can get just as darn excited about all this stuff as we can. Ultimately, people want to make a difference. I get to see that validated over and over again and it never gets old.”