One day in 2006, Marilyn Blum and her late husband, Steve, decided to spread mulch in their garden rather than hiring gardeners as they usually did. When she asked why Steve, who’d been recently diagnosed with early onset familial Alzheimer disease, was spreading the mulch “in a really weird way,” he became unusually angry and upset, she said.
“I didn’t realize at the time that his brain was telling him this is the correct way,” said Blum, now 74 and a Baltimore County resident. “Under normal circumstances he would have just answered me, but it really upset him.”
It was the first of a few incidents that made her consider antipsychotic medication as a treatment for his disease, a hereditary condition that impairs thinking and memory, and can cause changes in mood and behavior. The next one happened at an adult day program when Steve became upset that another man was sitting in the chair he preferred. When the man refused to move, Steve lifted the chair with the man sitting on it. The alarmed staff, Blum said, “basically called me and told me to come get him, and don’t bring him back unless he’s medicated more, which isn’t the best way to handle it.”
Trying antipsychotics, which nearly doubles the risk of death for those with Alzheimer’s disease or dementia, was a hard choice, but Blum believed it was the best course of action for her family. Her husband had a terminal illness, she said, that made him restless and agitated. She took the advice of a neurological specialist that could give him the best quality of life with the time he had left. Alzheimer’s took Steve’s life in 2014, and Blum now leads a support group for families coping with the disease.
When properly managed, antipsychotic drugs can help calm people with memory disorders who suffer from agitation, delusions or aggressive behavior. But these drugs can be dangerous for the elderly, and some believe they are overused. Those with dementia or Alzheimer’s disease who take the medication have a 70% increased risk of death due to pneumonia, cardiac complications and falls, according to a recent announcement by the Food and Drug Administration. This has led to efforts locally and nationally to reduce unnecessary use.
Geriatric doctors such as Frederick Nucifora, who is also an associate professor of adult psychiatry at the Johns Hopkins University School of Medicine, say the risks of the drugs are serious, as is the risk of overuse, but they are still needed in many cases.
“It varies, but up to 50% or more of patients with Alzheimer’s disease will also have psychosis,” Nucifora said. Psychosis occurs when a person has difficulty recognizing what’s real and what’s not, and can be terrifying for those experiencing it. Antipsychotic medications are designed to treat it.
“It’s very common for patients with dementia to also get agitated,” Nucifora said. “It can be very difficult to deal with because families and nursing homes are not always able to take care of them. They can be very combative.”
Michele Bellantoni, the associate director of post-acute and long-term care at Johns Hopkins Bayview Medical Center, said elderly patients often end up on antipsychotics after a trip to the hospital for something else.
“A common scenario for an older adult,” she described, is a fall and fracture. “Then they have surgery and narcotic pain medicine after the surgery, and they become quite delirious,” she said. Antipsychotics might be prescribed to treat the delirium, which she described as “a waxing, waning medical status that can often be with hallucinations,” that results from a brain that is neurologically impaired.
“It can be very harmful to the older adult with very severe agitated behaviors where they start pulling out their intravenous lines or catheters,” she said. “So hospital prescribers end up using these medications to manage it.”
The drugs then become part of a patient’s prescription once they are discharged from the hospital, oftentimes to short-term nursing homes to complete physical or occupational therapy. It then becomes the job of the nursing home, their physicians and nurse practitioners to “taper and remove these medications as the older adults are getting better. But not all delirium clears,” she said.
In Maryland, 13.2% of long-term nursing home residents use antipsychotic medications, just under the national average of 14.5%, according to data from the Centers for Medicare and Medicaid Services. The amount of use differs drastically among nursing homes, which experts and some studies connect to community demographics and inadequate nursing home staff.
Diligent and focused attention on an elderly dementia patient requires time and staff, two things some nursing homes don’t have enough of. An unfortunate but common result is an agitated patient, at risk of harming themselves, who cannot be controlled easily without powerful sedative drugs.
The Centers for Medicare and Medicaid Services rates the staffing quality of nursing homes based on the staff turnover rate and how many hours nursing staff members spend per resident each day. In some cases, homes with poor staff ratings correlate to higher than usual use of antipsychotics. But that’s not always the case.
Joseph DeMattos, the president and CEO of the Health Facilities Association of Maryland, the oldest provider association in the state that also represents multistate nursing home facilities, said community demographics and health disparities also contribute to higher numbers of people who use the medications, and help to explain why populations at nursing homes that have better than average staffing patterns also use more antipsychotics.
“If you’re in a community where there is a higher percentage of psychiatric diagnoses, drug addiction or traumatic brain injury in general, or in an area where there’s high unemployment, high violence and low health care,” he said, you can explain away a slightly higher than average use of drugs in a home. “What you have trouble explaining is someplace that’s way out of the norm by six or 10 percentage points.”
There have been efforts locally and nationally to reduce unnecessary use of antipsychotics.
The Centers for Medicare and Medicaid Services has been funding quality improvement organizations, active in each region of the country, which offer education and outreach programs for nursing homes and prescribers on how antipsychotic drugs affect the elderly.
In 2019, Johns Hopkins Bayview Medical Center created a program called the Cognitive Behavioral Service, which is staffed by a geriatric medicine physician, nurse practitioner, physician assistant and recreational therapist, Maggie Rogers, who extensively interviews dementia patients and makes a nonmedicated care plan while they are in the hospital. According to Bellantoni, once the patient is released from the hospital, the plan is shared with family members and home care nurses. If the patient goes to an assisted living facility, it is shared as part of the discharge instructions.
Bellantoni said the program has a daily capacity of about 20 inpatients, about half of whom receive full medical provider evaluations, along with nonpharmacologic interventions planning through Rogers.
The initial process, Rogers said, is usually an interview of about an hour. She asks patients and their family members about their lifestyle and social preferences: hobbies, TV shows, music, movies, food and nicknames they prefer to be called.
“Calling someone by their nickname, the response can be phenomenal because ... they feel as though I know them, and that gives them comfort,” Rogers said. “If we can meet their needs and try to act upon that before something happens, we have found that less medication has to be used.”
Equally important, she said, is ensuring the patient is not experiencing a pain that they can’t communicate. Common causes of pain for older adults, she said, include arthritis and toothaches. When a “dementia patient can’t say that to the nurse or their loved one, instead they become aggressive or angry. You don’t always have to use antipsychotic medicines to calm them down if they don’t get upset in the first place,” she said.
According to Rogers, the interventions prevent medication in about half of her caseload. The nursing homes that are affiliated with the program include FutureCare Canton Harbor and FutureCare NorthPoint.
The therapeutic approach Rogers takes has worked in Blum’s experience. After Steve’s incident with the chair, she took her husband to a different adult day program where he suffered a bout of delirium caused by a medication. The staff took a different approach. They cleared the room of other people, stayed with him and “talked him off the edge,” Blum said. “It took an hour, but one staff member calmed him down.”
Blum is now a facilitator of an Alzheimer’s Association, Greater Maryland Chapter support group that meets virtually each month. Her advice to others who are navigating their loved one’s Alzheimer’s disease or dementia is to find a specialist who is knowledgeable about drugs and how to dose them, and to seek education more generally.
“You have to learn a new way of communicating with your loved one, and that can make a world of difference,” she said.