Key takeaways about the psychiatric impact of Alzheimer’s disease
- Behavioral and neuropsychiatric symptoms can affect up to 97% of people living with Alzheimer’s disease (AD).
- Agitation and psychosis can be among the most disruptive and challenging symptoms, often contributing to decisions to transition a patient from home-based care to professional care settings.
- Many patients with AD experience a phenomenon called “sundowning,” meaning their neuropsychiatric symptoms such as agitation, confusion and anxiety often worsen later in the day.
- 13 million people in the U.S. are expected to be diagnosed with Alzheimer’s dementia by 2050, heightening the need for more effective treatments for the mood and personality symptoms that accompany cognitive decline.
- Johnson & Johnson is investigating a potential therapy for AD-related agitation and psychosis in Phase 2 clinical trials.
Alzheimer’s disease (AD) is closely associated with memory loss and other forms of cognitive decline—such as difficulty thinking, reasoning and communicating.
But that’s only part of the story.
Many people living with the disease experience neuropsychiatric and behavioral symptoms that affect mood, behavior and perception, including depression, anxiety and aggression. These symptoms impact up to 97% of people with AD, and their severity may increase as the disease progresses.
More than 7 million Americans are living with Alzheimer’s dementia, and that number is projected to rise to nearly 13 million by 2050. Johnson & Johnson has long been committed to researching the biological underpinnings of the disease. Company scientists are working on diagnostics that can identify AD in earlier stages and they are investigating potential therapies to slow the disease process over time.
“But even while we focus on these areas, millions of patients are already suffering from these devastating neuropsychiatric and behavioral symptoms,” says Fiona Elwood, Ph.D., Disease Area Stronghold Leader, Neurology, Johnson & Johnson.
Neuropsychiatric changes can be especially exhausting for family members and caregivers. “They are really what drive patients to need to be looked after outside the home,” says Elwood.
Read on as Elwood explains more about the neuropsychiatric and behavioral symptoms of AD that can cause the most distress for loved ones and caregivers and the meaningful progress that Johnson & Johnson is making to advance potential treatments.
1.
AD and dementia are often used interchangeably, but they shouldn’t be. Dementia is an umbrella term that describes symptoms like memory loss. AD is a specific neurodegenerative disease and the most common cause of dementia.
“Alzheimer’s disease is defined by biological changes in the brain, including the accumulation of amyloid plaques and neurofibrillary tangles,” says Elwood. These changes can begin years before symptoms become apparent, and the disease may eventually affect cognition, behavior, physical function and a person’s ability to live independently.
That complexity calls for different approaches across the disease journey. Johnson & Johnson is advancing research aimed at detecting AD earlier, investigating potential therapies designed to intervene in the underlying disease process and exploring new ways to address behavioral symptoms, including agitation and psychosis.
“It’s really important to define the biological underpinnings of disease so we can test our drugs against the mechanism that’s causing the dementia,” says Elwood. “Understanding the underlying disease process is critical to developing and testing treatments against the mechanisms contributing to a patient’s symptoms.”
2.
The way AD presents and progresses varies from person to person. Changes in mood, motivation and behavior may emerge early, while other symptoms become more common as the disease advances. Agitation can occur at any stage of AD, and psychosis most commonly emerges later, when cognitive impairment is more advanced, although timing varies among patients.
In its early stages, AD typically presents in two different ways. Some patients experience an executive function deficit, while others predominantly display memory impairment.
“Executive function is the ability to make complicated decisions where you’re weighing multiple different inputs at the same time,” says Elwood. “We do that all the time when we’re juggling our day, prioritizing by asking ourselves, ‘Am I going to go to the store? What time do I have to come back? Have I got time to drive across town before I have to go to this appointment?’”
Memory impairment can include concerning changes in episodic memory (being able to remember things that happened at certain times), semantic memory (recalling the meaning of certain things) and spatial reference memory (not only remembering where you put your keys, but where things generally “live” in space and time).
Scientists now know that neuropsychiatric impacts can begin to appear around the same time as these cognitive symptoms. Studies show that mood and personality changes like irritability, apathy, anxiety, sleep disturbances and depression can affect 75% to 90% of people in the early stages of AD.
3.
Among the many symptoms associated with AD, agitation and psychosis are often some of the most challenging for patients—as well as their caregivers—to navigate.
Agitation can manifest as restlessness, repetitive behaviors, verbal outbursts, aggression and resistance to care. Psychosis causes patients to lose touch with reality and experience troubling hallucinations and delusions.
“Memory loss and a decline in executive function can be distressing and reduce a patient’s independence, but agitation and psychosis can create additional safety concerns and caregiving challenges,” says Elwood. “The severity and unpredictability can make it increasingly difficult for families to continue providing care at home.”
“Sundowning” is also common among people living with dementia and involves the emergence or worsening of symptoms such as agitation, confusion and anxiety in the late afternoon or evening. They may “shadow” their caregiver and refuse to leave their side, cry, yell, pace, wander outside of the home or aggressively act out.
Researchers are still trying to understand why sundowning happens. Multiple factors are likely responsible, from physiological changes in the brain to emotional and physical fatigue. Sundowning has been associated with greater cognitive and functional impairment, increased caregiver burden and earlier institutionalization.
4.
When families and caregivers better understand that neuropsychiatric symptoms are a recognized part of the disease process—not intentional behaviors or separate psychiatric conditions—they can provide more compassionate care.
“The more openly that people talk about neuropsychiatric symptoms as a common part of AD, the less stigma there is with a diagnosis,” says Elwood. “Stigma is often driven by misunderstanding, and neuropsychiatric symptoms such as agitation and psychosis remain some of the least understood aspects of Alzheimer’s disease.
“Advancing research and developing new approaches to address these symptoms may deepen understanding of AD and reinforce that these behaviors are manifestations of a complex neurological disease, not a reflection of an individual’s character or choices,” she adds.
If we get new symptomatic treatments approved, there’s an opportunity to better support patients experiencing these symptoms and the caregivers who help care for them.
5.
Despite their prevalence and impact, neuropsychiatric symptoms associated with AD remain a significant area of unmet need.
To help address this challenge, Johnson & Johnson scientists are studying an investigational therapy for the treatment of AD-related agitation and psychosis. Currently in Phase 2 clinical trials, the therapy is delivered as a sublingual tablet that quickly dissolves in a patient’s mouth, eliminating the need to swallow a pill.
“Symptomatic treatments like this are going to bring new options to providers who already treat Alzheimer’s disease patients,” says Elwood. “If we get new symptomatic treatments approved, there’s an opportunity to better support patients experiencing these symptoms and the caregivers who help care for them.
“We want to be able to identify these symptoms early and treat them more effectively, so we can help patients remain connected to their families and continue receiving care at home for as long as possible,” she adds.
Johnson & Johnson’s work in Alzheimer’s spans research into the disease’s underlying biology, earlier detection through blood biomarkers, potential approaches to intervene earlier in the disease process and investigational treatments for behavioral symptoms affecting patients and caregivers today.
“We’re committed to patients and their caregivers,” says Elwood. “And we’re committed to our communities. We see the huge impact that Alzheimer’s disease has in every community around the world.”
