Implementing a Palliative Care Program for Dementia

In the United States alone, approximately 1.5 million people live in nursing homes and 1 million reside in assisted living facilities.¹ On average, nursing home residents stay in a long-term facility for more than 2 years.² Approximately 25% of Americans die in nursing homes, and approximately one-half of these patients die within 6 months of placement.³ Caring for these individuals presents many medical and health system challenges.

There is a growing appreciation of long-term care residents’ needs for palliative care services, especially for those with advanced, incurable, and/or chronic illnesses such as dementia. The societal burden of dementia as a terminal illness is substantial and increasing, and patients with advanced dementia and their caregivers are faced with a range of physical and psychosocial needs at the end of life. Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients facing serious illnesses and their families. Effective palliative care for patients with advanced dementia can improve patients’ symptoms, lessen caregiver burden, and help to ensure that treatment decisions are well informed and weighed in the context of patient and family goals and needs.⁴

At the Beatitudes Campus, a not-for-profit continuing care retirement community in Phoenix, AZ, an innovative palliative care program for older adults with dementia has been developed.⁵ This award-winning palliative care program, now called Comfort Matters^®, made headlines for their forward-thinking, person-centered approaches to caring for persons at every stage of dementia. Comfort Matters has by now trained thousands of people in 30 different nursing homes, changing the way in which dementia care and memory support are provided.

The program has also been adopted by the New York City–based charity, CaringKind, The Heart of Alzheimer’s Caregiving, formerly known as the Alzheimer’s Association, NYC Chapter, which is singularly focused on providing caregiving support to individuals and families living with Alzheimer’s disease and other forms of dementia. Ann Wyatt, residential care policy and strategy consultant for CaringKind, was the first to suggest replicating the Comfort Matters program in nursing homes in New York City in an effort to improve the level of care. Ms Wyatt visited the Beatitudes Campus in 2011 to take the Comfort Matters training and to confer with the program’s developers. Over the next year, with Jed Levine, executive vice president of CaringKind, as principle investigator of the project, the Comfort Matters consultants and CaringKind designed a multi-pronged replication of the program.

To better understand the planning and implementation of CaringKind’s palliative care program for dementia, as well as the clinical implications of the project, Annals of Long-term Care: Clinical Care and Aging^® spoke with Ann Wyatt and Jed Levine about the structure, staff, assessment tools, and success of the program, in addition to the challenges encountered along the way.

Can you describe the 30-month palliative care project and its “multipronged” design that replicates the Comfort Matters program? How did you adapt the program to the various settings and facilities participating in your program?

AW: After visiting the Beatitudes Campus in 2011, we were impressed, not only by how well-developed their evidence-based care practices were, but also by the degree to which they were able to identify and describe the organizational adaptations they had made in order to best support these practices. We knew immediately that, in order to bring these changes to New York, we would need to focus on implementation, not just education alone. Achieving and sustaining improved practice always requires some degree of organizational adaptation; yet, too often this aspect of the process is left out, and all the hard work of introducing and educating staff on a new practice loses momentum and then fades altogether. 

Furthermore, New York City nursing homes tend to be much larger than homes in other parts of the country, adding to the challenges inherent in making any sort of organizational and practice adjustments. We decided to work with three different homes because we felt it would give us the opportunity to understand more clearly which of the elements in the change process were specific to the culture of each institution and which were more universal. This was important to us because we wanted to be able to use our learning about implementation to assist other homes in the metropolitan area in the future.

The three homes we chose to work with—Cobble Hill Health Center in Brooklyn (350 beds), Isabella Geriatric Center in northern Manhattan (705 beds), and The New Jewish Home, Manhattan Campus (500 beds)—are quite large. For this reason, we designed our initial 30-month project to start, following the initial education period, with a 1-year pilot phase during which implementation of specific practices could first be introduced. We also had the participation of three hospice programs that regularly work with these homes (Calvary Hospital Hospice, MJHS Hospice & Palliative Care, and Visiting Nurse Service New York Hospice & Palliative Care). The purpose of using a pilot approach was to clarify as much as possible within each facility what specific organizational adaptations needed to be in place for each of the practice improvements to be embedded, spread throughout the facility (so as to be available to anyone with advanced dementia, wherever they reside), and sustained. These adaptations vary slightly from one facility to the next, depending on the size of the facility and the organizational structure. For example, when we started, none of the three homes were using a behavior-based pain assessment tool. This type of change obviously requires considerable staff education, but it also requires changes to a facility’s policies and procedures. As we discovered, it also requires that the process of implementation be revisited several times, using QAPI [Quality Assurance-Performance Improvement] tools, to ensure that the new practice is being followed, and is being followed correctly. When making a change, there can be a plan for implementation, but it is only in the revisiting that it can be determined whether the plan worked as it should or if it needs reinforcement or adjustment.

In July 2012 each home identified a site coordinator from their staff, and then we started the educational component with an introductory orientation and education session for administrators and managers. Next, we brought staff from each home and each hospice for a visit to the Beatitudes Campus so that they could see Comfort Matters in action. Following the visit, educational sessions were held in New York, where staff from the pilot unit, as well as managers and supervisors, received education in Comfort Matters fundamentals. Immediately following these sessions, the pilot year began in December 2012. 

The single most important method that we used for implementation was the requirement that each home hold weekly, on-unit, interdisciplinary meetings for the entire year in order to include staff at all levels. These meetings were the cornerstone of the project and have been incorporated into routine practice at these homes (all three continue to hold these meetings on their pilot units, 3.5 years after starting). Throughout the pilot year, our staff were present for almost all of these weekly meetings to help assess and provide for ongoing educational needs and to provide coaching. Through the discussions that take place at these meetings, staff is provided with education, take part in planning and assessing various interventions, and do some care planning and monitoring around interventions for specific residents. Not surprisingly, it has been an excellent teambuilding experience as well. All three site coordinators have proved to be both dedicated and skilled in facilitation. Staff from Comfort Matters provided all of the education, remained as consultants throughout the project, and are now overseeing the accreditation process.

One key point is that sometimes, when a staff member expressed anxiety about whether a particular change would work, we were able to remind them that bringing comfort to people with dementia happens through the implementation of specific care practices, as well as through the processes used to implement these practices. Adoption of dementia-appropriate care practices overall is key to better care, but care is always delivered one person at a time. The ongoing process of matching a person’s needs with available options is pivotal. Not only does each person have difficulties communicating his or her needs but also each person is different from others and also from themselves as his or her disease progresses over time. This means that we are always responsible for assessing whether an intervention is or is not working for each person.

We also had an extremely comprehensive and robust evaluation for the pilot year that looked at resident outcomes, cost, staff knowledge and attitudes, milieu and on-unit processes, and medication usage. We saw improvements in almost all areas, and these improvements have most definitely continued.

Have you tried to implement components from other palliative care programs as well, or exclusively components from Comfort Matters?

AW: We chose to work with Comfort Matters because of the attention they have paid to both education and the articulation of organizational adaptations. Other homes practice many or all of these approaches (eg, behavior-based pain assessment tools have been available for many years), but it is how the staff at Beatitudes Campus put the components together and how they have been able to educate others that has been especially helpful. In addition, we have been reaching out to and learning from people and organizations in the general palliative care world, such as ELNEC [End-of-Life Nursing Education Consortium] and CAPC [Center to Advance Palliative Care], to expand and enrich our efforts.

JL: We see this project as an opportunity to highlight the often unmet needs of persons with dementia and to educate the palliative care provider community about the special and unique needs of persons with moderate to advanced dementia. Conversely, there is an equal and similar need to educate those in long-term care, and other settings in which care is provided to persons with dementia, about the value of using the palliative care approach to improve quality of life for persons with dementia, their families, and the professional staff who care for them. 

And, although Comfort Matters forms the foundation and basis of our approach, we continue to learn from and draw upon a variety of dementia care providers and educators such as Teepa Snow (teepasnow.com), Memory Bridge (www.memorybridge.org), MUSIC & MEMORY^SM (musicandmemory.org), and practitioners of creative arts therapies, to enhance and expand the repertoire of techniques to engage with and comfort the resident with advanced dementia. 

What kinds of tools have you used to survey resident preferences and needs? How did you go about selecting those tools? 

AW: The core principle in the Comfort Matters approach is that providers of care need to know as much about the person’s past and current preferences as possible and that behavior is often the clearest indication of someone’s comfort and preference. The tools we learned about from Comfort Matters and then used in our homes are the “Roadmap,”⁶ the PAINAD [Pain Assessment in Advanced Dementia] scale,⁷ “What Caregivers Need to Know,”⁶ and “About Me.”⁶

The Roadmap is a very simple form for staff to use with an individual resident, in which the staff are asked to describe the specific behavior of the resident that is causing concern (avoiding such words as agitated or combative) and the time and frequency of the behavior. They are then asked to consider all possible contributors to the person’s actions; ie, what is happening in the environment, where are other residents, what noises are there, etc. Finally, staff is asked to consider all possible options that could help (ie, what possible causes of distress could be eliminated or minimized). The assumption is that the behavior is a signal of distress or a need of some sort, and our job is to determine what that is so that we can address it and help the resident find comfort. This can sometimes be very simple, or it can be very complicated and require many weeks of focus; however, the process remains the same.

The PAINAD is one of several behavior-based pain assessment tools that have been available for more than a decade. It has been thoroughly tested and is easy to understand for all levels of staff. The PAINAD helps staff to focus on behaviors that are often indicators that someone is experiencing pain. For example, we may use the tool for residents with advanced dementia who are likely to deny pain and are often unable to describe its location or severity.  

“What Caregivers Need to Know” is a tool used by staff at Beatitudes to learn more about a resident’s past and current life and preferences. “About Me” is a similar, somewhat briefer tool used by Hospice of the Valley, long-time partner to Beatitudes Campus, for use with people who are admitted to the hospice’s dementia program. Again, as we have learned, knowing what brings active comfort to someone (eg, scrambled eggs, a piece of chocolate, listening to Frank Sinatra) is absolutely essential to preventing or minimizing discomfort. One of our homes actually designed a new care plan, supplemental to the Minimum Data Set, entitled “What Comforts Me,” which they now discuss at all care plan meetings. 

Based on the project evaluations and your own experiences in the homes, how successful has the project been? How have residents with dementia responded to the changes? How has facility staff responded?

AW: The formal evaluation was for the first year only. From this, we saw improvements in all three homes; however, from the beginning, we knew the process of implementation would extend well beyond 1 year, which has certainly been the case. The project was originally designed to last 30 months (ending in December 2014), and, during this period, Beatitudes Campus developed a formal accreditation process, which they began in 2015. We were fortunate to receive additional grant funding, and all three homes signed on for an 18-month accreditation-track implementation process, which we are now halfway through. The homes signed on for this second phase because they had seen very positive results during the first phase and believed it was important to continue; this was true for staff at all levels, including administrators, managers, physicians, supervisors, and directive care staff. Actual accreditation is for the dementia units specifically (not the facility as a whole), but all three homes are committed to expanding the approach throughout their facilities and have taken steps in this direction. Families of those living on these units have also been very supportive. From our organization’s perspective, we couldn’t be more pleased with the decision to engage in this work; we have all learned so much, and it is very clear we are on the right track.

JL: This project has created so many learning opportunities for all of us involved. In addition to the observations made by Ann above, one of the exciting outcomes is the response from CaringKind’s social work, Helpline, and training staff, and the members of our Board of Directors. We have adopted palliative care as a core principal and have integrated the information into all of our caregiver services and training. Our hope is that families who contact us for information and support early in the disease can begin to internalize and accept the difficult and uncomfortable concept that Alzheimer’s disease and related disorders are progressive and eventually terminal. And hopefully, once informed about the benefits of palliative care, they will advocate for it, influencing the market place. 

We are enormously proud of this work and are especially gratified by the true cooperative and collaborative effort among everyone involved: the nursing home and hospice partners, the staff at Beatitudes Campus, and the funders. The result has been improved care for the residents of the homes and their families, making their lives more comfortable. 

What were the financial benefits or drawbacks to the implementation of palliative care?

AW: One of the components of our comprehensive pilot year evaluation was a cost study, conducted by the LeadingAge Center for Applied Research. Although none of the homes fully implemented all of the practices during that pilot year, we saw several examples of savings that could very well be linked to changes in care. For example, making every effort to replace nutritional supplements with real food that residents enjoy (ice cream, peanut butter sandwiches, etc) was not found to be more expensive and, in some cases, saved money. Fewer call-ins by staff were another modest, but consistent, finding in all three homes. Overall, we see this as better care without increased cost.

What particular challenges did you have, in general and in specific facilities? Are there any alternative strategies you would have used in hindsight? 

AW: There were two areas that we knew from the beginning would be extremely challenging, with the first being the size of the facilities and the need for ongoing engagement by managers with progress on the pilot units. The gap in engagement between what happens on one unit and managers who have responsibility for hundreds of other residents can also be daunting, and this proved to be very much the case. It is particularly problematic because organizational adaptations are involved. We raised this issue at the outset, but it took a while before we came up with a consistent approach to address the problem. Beginning with the advent of the accreditation phase, managers now meet every other week to review progress, identify obstacles, and plan for next steps, in response to feedback from the on-unit interdisciplinary teams. This is especially important because our goal has always been to ensure, in each home, that wherever people with advanced dementia reside, they will be able to benefit from the improved practices we have all been working to implement on the dementia units. We know that in most homes there are many more people with dementia who reside elsewhere than on the dementia-specific units.

Secondly, while we certainly knew that learning new practices requires both education and reinforcement, what became clearer as we went along was the degree to which staff had to “unlearn” some of the old practices. For example, we learned that both the American Diabetes Society and the Academy of Nutrition and Dietetics recommend (and have for years) that, with rare exceptions, people living in residential care facilities should, for quality of life reasons, be able to enjoy a liberalized diet. Initially, staff had lots of questions about why a resident with late-stage dementia did not need to be on a “diabetic diet,” as they had spent years trying to keep residents on these diets. Some families had these same questions as well, although other families had already tried to persuade homes that a liberalized diet with more appealing foods would be better for their relative. An important part of our educational effort has been to be very careful not to denigrate past practice but to make doubly sure staff and families have good information about the changes in thinking and practice that have evolved over the past few years.

JL: Organizational change is a huge challenge, especially for the size of the homes we are working with on this project. If we had to do it over again, I would change our expectation of how much change would occur over a relatively short period of time. We now recognize that the learning was iterative and that success with one individual’s practice—such as a nursing assistant feeling empowered to take the initiative to put a resident back to bed for a nap after lunch— reinforced the practice for that individual and led to others doing the same. It takes a long time for everyone to embrace the approach and, as Ann said, to “unlearn” past practices that are counter to palliative care principals. Like anything else, in order for a care approach to become embedded in a home, it requires practice, reinforcement, and a lot of patience during the process. I am grateful to our partners for taking the huge leap to implement Comfort Matters in their homes, and we are so pleased with the progress we have made, knowing that there is always room for additional learning and improvement. 

References

1. Ribbe MW, Ljunggren G, Steel K, et al. Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing. 1997;26(supp 2):3-12.

2. Centers for Disease Control and Prevention. Nursing Home Care. CDC Web site. https://www.cdc.gov/nchs/fastats/nursing-home-care.htm. Updated March 11, 2016. Accessed April 7, 2016.

3. Kelly A, Conell-Price J, Covinsky K, et al. Length of stay for older adults residing in nursing homes at the end of life. J Am Geriatr Soc. 2010;58(9):1701-1706.

4. Mitchell AL. Palliative care of patients with advanced dementia. UpToDate Web site. https://www.uptodate.com/contents/palliative-care-of-patients-with-advanced-dementia?source=see_link. Updated February 8, 2016. Accessed April 7, 2016.

5. Belluck, P. Giving Alzheimer’s Patients Their Way, Even Chocolate. New York Times. December 31, 2010. https://www.nytimes.com/2011/01/01/health/01care.html?pagewanted=all&_r=0. Accessed April 7, 2016. 

6. Palliative Care for People with Dementia: Why Comfort Matters in Long-Term Care. CaringKind-The Heart of Alzheimer’s Caregiving. New York, NY, 2015.

7. Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4(1):9-15.