National efforts are underway to improve the quality of care for patients with dementia in nursing homes, and internists who work with and in these facilities can participate in and perhaps even lead the changes.
As just one example, the Centers for Medicare and Medicaid Services (CMS) launched the Partnership to Improve Dementia Care in Nursing Homes, which developed systems to evaluate each patient and identify the approaches most likely to benefit him or her. One outcome was that, over 21 months (the fourth quarter of 2011 to the second quarter of 2014), the national prevalence of antipsychotic use by long-stay nursing home residents fell from 23.8% to 19.8%. All 50 states and every CMS region showed at least some improvement, the agency reported. There are new goals for further reduction of antipsychotic use in long stay nursing home resident of 30% by the end of 2016.
Other interdisciplinary initiatives, such as Comfort Matters, seek to improve patient quality of life in areas such as reducing unneeded rules about when to eat and sleep in institutionalized patients. The Comfort Matters dementia care education and research program was originally developed at Beatitudes Campus and Hospice of the Valley in Phoenix, Ariz. It sought to improve care by shifting the focus to each individual patient's day-to-day comfort and now has a core curriculum that can be adapted to other facilities.
These programs and initiatives are both timely and necessary, said Thomas Magnuson, MD, associate professor in the University of Nebraska College of Medicine's Department of Psychiatry in Omaha, Neb.
“The population is graying, and we have more and more people in facilities. They are more demented with more severe medical problems, and the level of care needs to be expanded,” Dr. Magnuson said.
Physicians who work in or with nursing homes can play a vital role in promoting the changes sought by these programs, either through a focus on patient-centered care or by working through administrative channels to develop and implement new policies, Dr. Magnuson said.
Enacting changes won't necessarily be easy, though, Dr. Magnuson added.
“The major issue is that it's a paradigm shift. Nursing homes are medicalized environments, and people tend to do medical things,” he said. “No one really gets trained in putting together and implementing nonpharmacological care plans in residency or fellowship.”
Susan Levy, MD, president-elect of AMDA The Society for Post-Acute and Long-Term Care Medicine in Columbia, Md., agreed. “Some of the issues affecting nursing homes have to do with how physicians are trained. Medical school and postgraduate education and training rarely addresses care in the long term and post-acute setting. We have to be willing to listen and adapt to the nursing home setting,” she said. “We should always look at non-medication alternatives that are usually better and safer for these patients.”
Yet there is overlap between the recent initiatives and current best practices in medicine, Dr. Levy said. “Physicians might be more comfortable thinking of it in terms of patient-centered care, where we look at the diagnosis and develop treatment plans that consider the whole patient when setting goals for that individual's therapy,” she said.
Patient-centered care in nursing homes includes accounting for both the patient's age and cognitive status, said Gillian Hamilton, MD, PhD, vice president of education and innovation at Hospice of the Valley.
“Internists tend to apply guidelines we've learned that have not been tested on people older than 80 or people with dementia,” Dr. Hamilton said. “Every medication has side effects, and with elderly brains they are worse, so physicians should think very hard before continuing or adding medications. No elderly patient should be on 8 or 10 medications.”
Working through channels
Dr. Hamilton added that dementia may require physicians to pick their battles when devising treatment plans. “There are health care guidelines that really don't fit the dementia population. I've had to tell a couple of health plans that if my patients are terrified of getting blood drawn, I'm not going to put them through getting an HbA1c every 6 months just so [the health plans] can have numbers.”
It is also important to remember how dementia affects patients' ability to express themselves, particularly when it comes to agitation, said Catherine E. DuBeau, MD, ACP Member, a professor of medicine and clinical chief of geriatric medicine at the University of Massachusetts Medical School in Worcester.
“We need to move away from the one-size-fits-all approach,” Dr. DuBeau said. “Realize that agitation can be a presentation of a lot of potential issues, from pain to boredom to sadness, or unrecognized needs or fears the patient can't otherwise express. Approach it as part of a differential diagnosis.”
Dr. DuBeau noted that patients who are tapered off antipsychotics will need therapies that engage them mentally, socially, and emotionally.
“There needs to be an effort to figure out who they were as a person before they developed dementia, and to try to hold on to that and work with it. This is where family and other caregivers close to the patient are so important,” Dr. DuBeau said. “It has to start way back, before dementia care is necessary. Primary care physicians have an important role in encouraging these conversations with family and the patients themselves. Good dementia care comes from planning.”
Dr. DuBeau encourages physicians to find out what is important to the patient, what gives the patient joy, what upsets the patient, and the patient's work or role in life before dementia. “For example, doll therapy may work well for some elderly women if they had a prior role caring for children. Or, we gave a retired physician [with dementia] a clipboard so he could make his daily ‘rounds,’ and he was much happier.”
Happier patients make it easier for staff in the long run, Dr. DuBeau said. “It's difficult to provide care for someone who is agitated or combative, or who uses foul language. But if you decrease those negative interactions by providing programs that keep people with dementia stimulated, happy, and having positive social engagement, your staff will be happier, too. A rising tide will lift many boats.”
All aboard for change
It's one thing for a physician to embrace the goals of initiatives like the CMS Partnership and Comfort Matters. It's another thing entirely to get others on board to implement facility-wide changes.
“I don't think anyone will stop a physician from simplifying medications because the evidence is there for it. What's difficult is getting the whole team committed to quality of life,” said Dr. Hamilton. “Decreasing medications like antipsychotics means the staff needs to be educated, trained, and willing to provide activities that offer distractions. Physicians, nursing directors, and administrators need to work together. You really need a team.”
Physicians who work with nursing homes but not on-site as staff may need to put in more face-time at the facility, said Dr. Levy.
“Most nursing homes run with a nursing model where nurses are the leaders, unlike hospitals where physicians may take more of a leadership role,” Dr. Levy said. “Collaborate with the nurses and facility administrator, spend time in the facility. Don't just run in, see patients, and run out.”
The extra time at the facility can also bolster a physician's clout, Dr. Levy added. “Attending physicians are in an excellent position to work with the facility medical director and make them aware of opportunities for improvement,” she said. “As physicians, we do have a certain amount of respect when we ask to have things done a certain way. As long as you're part of the solution, people are likely to listen to you.”
Yet physicians only have so many hours in the day to see all of their patients, so they may have to be creative, said Dr. Magnuson. For example, he suggests that physicians make short videos describing different strategies for different scenarios. “This way, it's by someone the staff knows, who actually sees their patients, and not just someone who works somewhere else and comes in, tells them what to do, and leaves. And they can watch it as often as they need to.”
Physicians should try to involve all care providers in soliciting ideas and feedback, especially aides, Dr. Magnuson said. “Aides are almost never at care-planning meetings, even though they provide 90% of the care. They don't often feel comfortable speaking, but they can offer a lot of good suggestions because they know the patients and can tell you what will work and what won't.”
Dr. Levy also suggests family councils, where groups of family members get together on a regular basis and take issues to administration. “It's a good way to engage the families as part of the solution. They know the patients best. A good facility will understand that they need to listen to families as customers.”
Making it happen
When implementing change, it's best to break it into achievable chunks, said Dr. Levy. “It's like any other project. Evaluate the resources you have, look at your physical plant, and see what can be done. Then choose a starting point.”
For example, it may be easiest to start with meals, Dr. Levy said. “What can you do to make the dining experience better? Have a team for that. Same for the bathing experience. Break it down, and then continue to build on your successes. In the end you will have a better patient centered experience.”
Many facilities bring in outside educators from programs such as Comfort Matters. “It's usually a matter of training the trainer, where a consultant or educator comes in [for select staff] or the facility has someone go and get trained and then come back and roll out a training program,” Dr. Levy said.
The most important thing is to make sure it's the right training and education for the facility, said Dr. Magnuson. “I tell people that I don't care where you get the training, just as long as it meets both the facility's need and state requirements for continuing education and dementia care.”
Physicians in academia can also affect change in a broader sense, Dr. Magnuson said. “There will be people who are tough to convince, but as [young physicians] come up through their education and training and understand the new way of doing things from the beginning, there won't be pushback. It's just how they will do their jobs.”
This extends to nursing schools and pharmacy schools, Dr. Magnuson said. “I'm giving a talk at our pharmacy school about not using drugs so that pharmacists can talk about all the options when families come and talk to them. I never thought I would talk to a pharmacy school class about not giving medications.”
Dr. Magnuson also stressed that legislators need to hear physicians' perspectives on nursing home care. “The only time things change in mental health care is when someone at the national or state level is directly affected by the issue, like when John F. Kennedy's sister Rosemary had mental health problems, or when Rosalynn Carter or Tipper Gore took an interest,” Dr. Magnuson said. “Go to your legislators and ask them if they've ever had a family member with dementia. Chances are many of them will.”