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Understanding Alzheimer’s Agitation: Survey Points to Missed Diagnoses and Caregiver Burden
Many caregivers, both paid and unpaid, miss or misinterpret agitation symptoms in Alzheimer disease, fueling stress, stigma, and delayed medical support.
A new national survey suggests that misunderstanding the behavioral symptoms of Alzheimer-associated agitation (AADAD) may leave many caregivers struggling without appropriate support or guidance.
The survey, commissioned by the Alliance for Aging Research (AAR) and sponsored by Lundbeck and Otsuka, included 1,000 US adults and 1,000 unpaid or family caregivers of individuals with AD. Findings from the report, The Agitation Blindspot in Alzheimer’s Care, reveal widespread confusion about the condition and highlight significant gaps in communication between caregivers and healthcare professionals.
Nearly half of individuals living with AD exhibit agitation symptoms such as restlessness, disinhibition, or verbal and physical aggression, according to AAR. Yet around 40% of adults surveyed did not associate these symptoms with the disease. Among caregivers, only 36% linked physical aggression and 31% linked disinhibition to AD. Nearly three-quarters of caregivers also believed agitation could be managed with the same care strategies used for memory loss, a misconception AAR says overlooks the need for separate diagnosis and management.
Findings from the report reveal widespread confusion about the condition and highlight significant gaps in communication between caregivers and healthcare professionals.
Caregivers Feel Overwhelmed
That lack of understanding may compound caregiver distress. More than 30% of caregivers reported hesitancy to discuss agitation symptoms with a physician due to fear, guilt, or stigma. Over 90% of caregivers of individuals with agitation said they feel overwhelmed or emotionally drained, and many described poor sleep, social isolation, and work-related impacts. About half said that managing agitation was harder than coping with memory loss.
“These findings highlight the urgent need to raise awareness about symptoms of agitation in Alzheimer’s dementia and to better support unpaid and family caregivers, who too often face this journey in isolation,” said Sue Peschin, president and CEO of the AAR, in a statement. “We encourage caregivers to talk with their loved ones’ healthcare professionals about any changes in behavior they see, so doctors have the full picture and can help identify the best strategies and support.”
The survey is part of a broader initiative to improve awareness and education around the condition. The findings underscore ongoing challenges in recognizing and managing AADAD in clinical and caregiving settings, where behavioral symptoms often remain underreported and undertreated.
