Sonya Collins
“George” had chronic constipation. But as an older adult living with advanced Alzheimer disease, he couldn’t talk to his doctors about what might be triggering the problem or work with them to help determine the best care plan. Instead, the constipation worsened, and George would become agitated and aggressive. When his behavior became too difficult to control, his family caregivers asked the physician for help. He was prescribed antipsychotics to calm him down, which came with added adverse effects and did nothing to address the underlying constipation.
That’s when George’s family caregiver reached out to the Care Ecosystem team at the University of California San Francisco (UCSF). Coordinated by a navigator, the telephone-based, multidisciplinary collaborative dementia care model, which includes medical specialists, social workers, pharmacists, and other experts, augments existing health care services by lending expertise in dementia care directly to family caregivers and to their health care providers.
“We were able to help the patient take the medications to manage the underlying problem and avoid these other medications that come with unwanted adverse effects,” said Kirby Lee, PharmD, professor emeritus in clinical pharmacy at UCSF School of Pharmacy, who led pharmacists on the Care Ecosystem team.
George’s story is not unusual. An estimated 6.7 million Americans over the age of 65—or about 1 in 9 older adults—are living with Alzheimer disease. Some 15.7 million U.S. adults care for a family member with dementia. As treatment options increase, patients and their caregivers need more support. Pharmacists can play a critical role in supporting patients, caregivers, and other health care providers from the community pharmacy to the clinic.
Counsel on risk and prevention
Before patients ever show the first signs of dementia or mild cognitive impairment, their charts reveal health conditions they have or medications they take that might raise their risk.
Anticholinergics, benzodiazepines, proton pump inhibitors, and certain pain medications are associated with an increased risk for Alzheimer disease, as are some chronic conditions. Numerous other medications are known to induce Alzheimer-like symptoms. When patients pick up these medications, or medications for risk-associated conditions, pharmacists may seize the opportunity to counsel patients on these links and on lifestyle factors that might lower risk.
“One of the big things we overlook is preventive care,” said Emily Peron, PharmD, an associate professor at the Virginia Commonwealth University School of Pharmacy, who works with an interprofessional team of faculty and students to provide care coordination and wellness services for community-dwelling older adults through the Richmond Health and Wellness Program. “We can be thinking more about what we are doing in terms of lifestyle education, diabetes prevention, and all of those things that we know to be potentially reversible causes of dementia.”
Educate on available drugs
Recent years have seen FDA approvals for two ∆-amyloid-targeted, disease-modifying monoclonal antibodies for Alzheimer disease. Aducanumab (Adulhelm) earned accelerated approval in 2021 followed by lecanemab (Leqembi), which also received accelerated approval and, ultimately, traditional approval in 2023. A third drug in this class, donanemab, is in the pipeline. The medications entered a drug landscape that had not changed in 20 years, and which consisted only of therapies that treat symptoms but do not modify disease.
“A big need in Alzheimer care that pharmacists can address is to educate patients and caregivers on the available drugs and reasonable expectations of these drugs,” said Jeff Sherer, PharmD, a clinical professor at the University of Houston College of Pharmacy.
As disease-modifying agents, the newest drugs for Alzheimer disease target aggregated forms of amyloid, which experts believe underlies the progress of the disease. Aducanumab targets soluble oligomers and fibrils. Lecanemab targets oligomers and protofibrils. Donanemab targets fat.
But, as the newest tools in the toolbox, the data on the two FDA-approved drugs come from just 18 months of research.
“We don’t know what the changes in endpoints seen in clinical trials mean for patients in the real world,” said Kristin Zimmerman, PharmD, an associate professor in the Department of Pharmacotherapy and Outcomes Science at Virginia Commonwealth University School of Pharmacy. “We don’t understand the long-term clinical significance.”
On the other side of the coin, mainstays such as cholinesterase inhibitors and memantine lessen some of the symptoms of the disease but do not interfere with its progress.
“In the past, commercials showed an unhappy grandma who has Alzheimer disease and then she gets put on Aricept and now she’s back to her old self, but the drugs just don’t work that way, unfortunately,” Sherer said. Pharmacists can help patients and their caregivers have more reasonable expectations of these therapies.
Research also identifies gaps in some pharmacists’ knowledge of the common adverse effects that come with these older Alzheimer drugs. According to a 2018 study in the Journal of Rural Health, pharmacists in the most remote areas of Northern California, Southern Oregon, North and South Dakota, and West Virginia, were less likely to be able to name two or more adverse GI effects of donepezil (Aricept). They were also less likely to stock metamine and certain other Alzheimer drugs.
Though finding effective disease-modifying agents is considered the holy grail of Alzheimer disease research, these older therapies aren’t expected to go anywhere anytime soon. The new drugs are only approved for early stages of Alzheimer disease and many questions about them still remain.
“We don’t know what the central nervous system (CNS) adverse events seen in clinical trials mean for patients in the real world,” Zimmerman said. “Amyloid-related imaging abnormalities are considered indicative of CNS-related adverse events, like edema and micro hemorrhage. We’re not sure if it hastens cognitive decline in the long term, whether it might induce a hemorrhage-prone state in the brain, whether it can induce seizures, and in rare cases cause death—as we’ve seen in clinical trials.”
These concerns mean patients on the therapy require frequent monitoring, which puts pressure on patients, caregivers, health systems, and payers to cover multiple MRIs and adds to the costs of already expensive therapy. It’s still unknown how patients will pay for disease-modifying agents and whether access will be equitable across socioeconomic groups.
“Only lecanemab is currently accessible—and I won’t even say easily accessible—but CMS will pay for 80%. But when you’re talking about a drug that costs upwards of $30,000 a year plus imaging and infusion centers, 20% is still going to be a lot of money for a lot of people,” Sherer said.
The clinical benefits, risks, and out-of-pocket costs of new Alzheimer drugs will become clearer over time. New drugs will also continue to come to the market. Some 150 drugs—both new and repurposed older ones including metformin and semaglutide—are currently in clinical trials for Alzheimer disease.
“There’s amyloid-targeting agents and biologics, but also more traditional small molecule drugs with novel targets like sigma receptors and tyrosine kinase inhibitors and more traditional targets like NMDA, which is what metamine targets,” Zimmerman said.
Given that older drugs address symptoms only and new drugs are not yet readily accessible, pharmacists might call patients’ and caregivers’ attention to clinical trials and point them toward channels for enrollment.
Eliminate dangerous drugs
Patients living with dementia or mild cognitive impairment and those who are at risk stand to benefit from a pharmacist’s intervention on other medications that can cause or exacerbate cognitive symptoms.
“This is something that every pharmacist can do,” said Shalini Lynch, PharmD, a professor in the department of clinical pharmacy at UCSF School of Pharmacy and a member of the Care Ecosystem team. “Whether we’re in the hospital or the pharmacy, we have medication lists. Take a look at the list and see if anything jumps out at you as being potentially risky or inappropriate.”
Research led by UCSF’s Lee and co-authored by Lynch adds to a large and growing body of evidence that medication oversight by a pharmacist benefits complex older patients in general and those living with dementia in particular.
The study, published in the May 2023 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, used a randomized controlled clinical trial to demonstrate the benefits of including pharmacists in the Care Ecosystem model. Compared to patients who got usual care, those who had access to a Care Ecosystem pharmacist were less likely to be prescribed high-risk or inappropriate medications. Due to the successes of UCSF’s Care Ecosystem model, CMS recently reported plans to reimburse for care provided through these types of comprehensive and collaborative models (see resource in sidebar).
Care Ecosystem pharmacists developed a questionnaire for patients and caregivers to screen for medication problems that can trigger a referral to a pharmacist for a comprehensive medication review. All medications that undergo review, not only those for dementia, are scrutinized for potential interactions and cognitive adverse effects.
“Our pharmacists specialize in dementia, sure, but with our background in geriatric pharmacy, we’re also addressing hypertension, osteoporosis, diabetes, drug interactions, and adverse effects,” Lee said. “We don’t focus just on memory drugs. We focus on the whole patient and whatever medical conditions they’re dealing with.”
Pharmacists from the community pharmacy to the clinic can make a major impact in this area by identifying and potentially eliminating drugs that may exacerbate dementia symptoms.
“We can all brush up on our knowledge of and ability to identify med-related problems,” Zimmerman said. “We can take a sense of ownership of more comprehensive med reviews and feel empowered to take action on med-related problems.”
See signs, recommend resources, make referrals
Because some 70% of adults with dementia live outside of a facility setting, there may be a greater role for community pharmacists than many appreciate.
“There’s a lot that can be done in the community pharmacy where you’re getting a lot of touch points with folks,” said Peron. “The pharmacist, especially in a community, is going to have relatively frequent interaction compared to other providers a lot of times.”
Pharmacists can get a sense of patients’ cognitive state, Peron said, through routine interactions at the community pharmacy. They can take note of whether patients of concern are getting their prescriptions filled regularly and their demeanor when they do so. “Even things like someone asking the same questions repeatedly, seeming more confused, withdrawn” can provide clues to a patient’s cognitive state.
Pharmacists also have the opportunity to gauge caregivers’ concerns about changes in their loved one’s condition. “We can think about drug formulations, adherence devices, and offering referrals to a geriatrician or a neurologist.”
Become a dementia-friendly pharmacy
The largely untapped role that community pharmacists could play in dementia care is reflected in a growing movement to develop dementia-friendly pharmacies. Countries including the United States, the UK, Australia, and Austria have resources on the value of and how to become a dementia-friendly pharmacy.
Clinicians and staff in these pharmacies have special training to recognize the unique needs and abilities of people with dementia and their caregivers and better communicate with and serve them. The pharmacies may also make changes to lighting, signage, and other aspects of the environment in order to facilitate patients with cognitive impairment.
The Wisconsin Department of Health Services offers a two-page handout on dementia-friendly pharmacy (see resource in sidebar), which includes a link to a free 20-minute online training module for pharmacy staff members and links to other training resources. The dementia-friendly model focuses on continuing to treat the whole person and offer person-centered care throughout the course of dementia.
“Just because someone has a diagnosis of mild cognitive impairment or even dementia,” Peron said, “doesn’t mean that they can’t make decisions for themselves, doesn’t mean that they can’t play a role in their health care and doesn’t mean that they don’t deserve to be spoken to directly about their care.” ■
Helpful resources
Experts interviewed for this story recommended the following resources for pharmacists caring for patients with dementia.
Health In Aging
“Ten medications older adults should avoid or use with caution.”
apha.us/TenMedsToAvoid
Journal of the American Geriatrics Society
“American Geriatrics Society 2023 updated AGS Beers Criteria® for potentially inappropriate medication use in older adults.”
apha.us/AGSInappropriateMeds
Alzheimer’s Association
“Medical management and patient care.”
apha.us/MedMgt
HHS
“Role of the pharmacist in the care of persons living with dementia.”
apha.us/PharmRole
Wisconsin Department of Health Services
“Dementia-friendly pharmacists”
apha.us/DementiaFriendly
Texas Health and Human Services
“Improving dementia care: Strategies for pharmacists in long-term care facilities.”
apha.us/LongTermCare
CMS
“Guiding an improved dementia experience model.”
apha.us/InnovationModel