Physicians striving to care for patients with dementia, as well as to assist their caregivers, face challenges and dilemmas, particularly as the disease advances.
Medication options remain limited to either slow dementia or to treat some of its behavioral and psychological symptoms, such as agitation and paranoia. By age 65, nearly 9% of Americans have developed some form of the disease, according to an analysis of federal survey data published in 2017 by JAMA Internal Medicine. Moreover, the medications that are sometimes prescribed for its troublesome symptoms have risky side effects, including falls, confusion, and stroke.
Nonmedication strategies have been studied, and some appear to be more effective than prescribing antipsychotics and other drugs, according to a meta-analysis published on Nov. 5, 2019, in Annals of Internal Medicine. Physicians also can provide a lot of support for patients and their families starting shortly after diagnosis, helping them anticipate and think through some safety issues that can arise as dementia progresses, said ACP Member Catherine DuBeau, MD, a geriatrician and professor of medicine at Geisel School of Medicine at Dartmouth-Hitchcock Medical Center in Hanover, N.H.
“I think the important thing for providers is to realize that treatment of dementia is much more than a prescription,” she said.
But where nonmedication strategies are concerned, what works for one patient versus another might vary a lot depending on the symptoms involved and that patient's triggers, all of which are difficult for a time-pressed physician to sort out during an office visit, said Jon Winter, MD, a clinical professor at the VCU-Shenandoah Valley Family Practice Residency in Front Royal, Va.
Meanwhile, as patients' agitation and other symptoms worsen, family members can become frantic for ways to reduce them, often with the goal of keeping their loved ones at home rather than moving them to a nursing facility, Dr. Winter said.
“Inappropriate medication [prescribing] continues, but the situation is much more complicated and nuanced,” Dr. Winter said. “I don't think that inappropriate medication use is physicians trying to take an easy fix. I think it's folks who are desperately trying to help patients and families using the limited tools that they have.”
Once patients are diagnosed with dementia, rather than mild cognitive impairment, there are a number of potential concerns that physicians can help them and their caregivers explore in a neutral, nonjudgmental way, Dr. DuBeau said. How do they keep track of their pills? Is it time for a family member to periodically check on adherence? Are there signs that they might be vulnerable to telephone or others sorts of scams? Are they staying on top of their bills?
Sometimes, Dr. DuBeau will ask patients, “What would you do if you smelled smoke?” to see if they know to call 911. “It's very effective to ask this in front of family members because it emphasizes some of the real safety issues if they don't know who to contact in an emergency,” she said.
As symptoms worsen, be sure to check in regarding driving, which is far from an easy topic, Dr. DuBeau said. Not only is getting behind the wheel tied to a person's sense of self and autonomy, but once individuals no longer drive they can become more isolated and need additional help from family and others, she said.
Rather than asking patients whether they are getting lost, instead query if they get honked at more often or have had any minor fender benders, Dr. DuBeau suggested. Or ask a family member separately, she said: “Would you ride with your mom? Would you let your child ride with your mom?” She recommended the National Transportation Safety Board's checklist, “Am I a Safe Driver?,” which both clinicians and patients can use. (See a related article for more on ethics and dementia care.)
As for medication, Dr. DuBeau said she only raises the option of cholinesterase inhibitors, such as donepezil and rivastigmine, once a patient's difficulties have progressed beyond mild cognitive impairment, or when the patient or family asks about medication. But she's careful to explain that if the drugs have any efficacy, their only benefit might be to somewhat slow cognitive and functional loss and that they won't prevent disease progression.
When patients still want to try medication, she'll often suggest a trial of three to six months to see if there's any change in trajectory, whether that derives from reports about activities of daily living or scores on cognitive testing. If the individual has developed behavioral symptoms such as agitation or aggression, keep in mind that there's a potential risk that weaning the patient off the medication might worsen those behaviors, she said.
Lawrence Kerzner, MD, FACP, a geriatrician at Hennepin Healthcare in Minneapolis, describes a similar discussion about risks and benefits and typically asks patients to return in a month to assess if the medication might be working, as well as any side effects. Still, assessing efficacy is difficult and can be subjective, he said.
“How do you know it's not a placebo effect?” Dr. Kerzner asked. “How do you know that it's not something else in the psychosocial environment that's helping as well? That's why the use of these medicines is so troubled.”
Another challenge is that some of the potential side effects of the cholinesterase inhibitors, among them nausea, decreased appetite, weight loss, or problems with bladder or bowel control, can similarly occur with worsening dementia, Dr. Kerzner said. As a result, he said, they “are frequently erroneously ascribed to the dementia itself rather than the effects of the medication.”
As dementia progresses, some of the symptoms become more challenging for family or caregivers to cope with on a daily basis, said Bill Kerns, MD, a clinical professor at the VCU-Shenandoah Valley Family Practice Residency in Front Royal, Va. For example, patients may develop agitation, a tendency to wander off, or paranoia, “such as thinking people are poisoning them or stealing from them,” he said.
Dr. Kerns and Dr. Winter were among the coauthors on a study, published in the Journal of the American Board of Family Medicine in 2018, in which 26 primary care physicians were interviewed about their perspectives regarding prescribing antipsychotics and other medications for dementia symptoms, despite medical guidelines and other efforts to discourage their use. The physicians in the study said there's limited information available about nonmedication options and described those approaches as time-consuming and often costly for families, such as hiring caregivers.
“Medicines, on the other hand, both in the nursing home and out in the community, are cheap, easy to prescribe, and seem to be effective,” said Dr. Kerns, relaying their feedback. “When we talked to the physicians, they perceive them as being more effective than what the literature shows, and they perceive them as being safer than what the literature shows.”
Of the 26 physicians, only two described having possibly seen one of the severe medication-related side effects described in black-box warnings for antipsychotics. But given the age and fragility of the patients, the precise cause was uncertain, the study authors noted. One physician recounted how a colleague's patient had had a stroke shortly after starting an antipsychotic, but strokes are not rare among nursing home patients, leaving the physician unsure if the medication was responsible.
While Dr. Winter feels strongly that antipsychotic medications are too often inappropriately prescribed for dementia symptoms, he agreed that there's a paucity of research into alternatives. Plus, even when physicians raise the potentially fatal risk of starting a drug, family members can be more focused on the here and now, he said.
“When talking to families, their agenda tends to be palliative,” Dr. Winter said. “Caregivers and families tend to prioritize death lower than quality of life or keeping patients in their home and preventing institutionalization.”
To provide physicians with nonmedication guidance, Jennifer Watt, MD, and her research colleagues embarked on their 2019 meta-analysis in Annals of Internal Medicine, looking at randomized studies comparing pharmacological and nonpharmacological interventions for symptoms of agitation or aggression. There were some limitations in the studies they cited; of note, nearly half had at least some missing outcomes data. Still, they identified several nonpharmacological interventions that appeared to be more effective than usual care, among them multidisciplinary care, massage and touch therapy, and music.
Some interventions worked particularly well for specific behaviors. For instance, outdoor activities appeared more effective than antipsychotics for physical aggression, said Dr. Watt, the study's lead author and a geriatrician at St. Michael's Hospital in Toronto. The meta-analysis includes a graphic to help clinicians match the patient's specific behavior with interventions that appear to show the most benefit. Ideally, doctors can refer the patient to another clinician, such as a nurse or an occupational therapist, who can identify the most disruptive behaviors and brainstorm strategies to ease those symptoms, Dr. Watt said.
Physicians also can play a key role in directing family members and caregivers to resources that will help them isolate underlying triggers that might be linked to behaviors. Someone who seems constantly restless, Dr. Watt said, might want to go outside for a walk. Someone else might get up and walk around a lot at night but could have undiagnosed restless leg syndrome, Dr. Kerzner said.
For clinicians and caregivers alike, it's important to adjust one's mindset and expectations in how one communicates with patients who have advancing dementia, to reduce the likelihood of inadvertently triggering them, Dr. DuBeau said. Above all, she said, remember that “If your brain is not working, you are scared all of the time.”
When communicating, try to adapt and honor the world and perceptions of patients with dementia, responding more to the emotion behind what they say than to the content, Dr. DuBeau said. The example she often uses is that if someone says there are monkeys on the front porch, and that perception gets refuted, that can instigate agitation and resistance. Instead, she suggested, find out if they are nice monkeys or scary monkeys. If the hallucination is not stressful, medication shouldn't be considered, she said. If it is stressful, then redirect and reassure that patient that he or she is safe.
Once a patient's symptoms become more severe, one option is to add memantine to a cholinesterase inhibitor, said David Reuben, MD, FACP, chief of the division of geriatrics at the David Geffen School of Medicine at UCLA. The drug, which appears to work by regulating the activity of glutamate, a chemical involved with cognition, has been approved for moderate-to-severe Alzheimer's. Sometimes, though, patients and families will push to add it sooner despite the lack of evidence of benefit for early dementia, he said.
“One of the big problems here is that this is a terribly devastating disease and we don't have good drugs,” Dr. Reuben said. “As one of my patients said, ‘Why not give it? What's there to lose?’”
As dementia becomes more advanced, it's important that the physician continues to interact with the patient as well as the caregiver, Dr. Reuben said. “We involve them in the decision-making process as long as possible,” he said.
Dr. DuBeau echoed that reminder, saying that a patient can become understandably upset if the physician only speaks with the family or caregiver. “It's an easy thing to fall into,” she said.
During discussions, also watch out that the patient's interests and goals are being met and are not being overridden in some way by the caregiver, Dr. DuBeau said. Sometimes that might require creating an opportunity to talk to the patient alone, perhaps by asking the caregiver to meet with another clinician for education or counseling, she said.
“And remember to ask the caregiver, ‘How are you doing?’” Dr. DuBeau stressed. “It's a very powerful and appreciated question.” If caregivers are struggling, she said, they can be provided referrals as well as directed to the help line and online resources of the Alzheimer's Association. “Because a burned-out caregiver is bad for everybody.”