Widespread Misunderstanding of Agitation in Alzheimer Dementia Leaves US Caregivers Struggling
Key Clinical Summary
- The Alliance for Aging Research surveyed 1000 Alzheimer caregivers and 1000 US adults, revealing major gaps in awareness of agitation in Alzheimer dementia.
- 93% of caregivers report emotional exhaustion, and 59% face daily agitation symptoms in loved ones.
- Nearly one-third of caregivers hesitate to discuss symptoms due to guilt, stigma, or fear of being misunderstood.
A new national survey from the Alliance for Aging Research, conducted by Wakefield Research and funded by Otsuka and Lundbeck, highlights the profound toll of agitation in Alzheimer’s dementia on caregivers across the US. The Agitation Blindspot in Alzheimer’s Care Survey underscores a pervasive lack of understanding about agitation, including its symptoms, its impact, and its distinction from memory loss.
Study Findings
The survey of 1000 US Alzheimer caregivers and 1000 US adults aged 18+ (conducted April 21-May 5, 2025) found that 44.6% of individuals with Alzheimer dementia show signs of developing agitation. Despite this, most caregivers remain unaware that agitation is a distinct neuropsychiatric symptom, separate from cognitive decline.
Agitation in Alzheimer dementia often manifests as physical restlessness, verbal and physical aggression, or disinhibition. Yet only 36% of caregivers link physical aggression and 31% associate disinhibition—such as undressing in public or inappropriate remarks—with the disease.
Caregiving takes a heavy toll: 93% of respondents said they feel overwhelmed or emotionally drained, and nearly half (49%) find agitation harder to manage than memory loss. Among those caring daily for an individual with agitation, this rises to 59%.
The burden extends beyond emotional strain. A quarter of caregivers report quitting or reducing work hours due to caregiving responsibilities, and 22% cite a decline in physical health. Social disconnection is also pronounced as 38% feel isolated, and 64% lack time for personal interests.
Stigma and silence persist as 40% of US adults fail to link agitation with Alzheimer disease, while 73% of caregivers mistakenly believe agitation requires the same care as memory loss alone. Nearly 1 in 3 caregivers (32%) avoid discussing agitation with clinicians out of guilt or fear of judgment.
Clinical Implications
The findings reveal a critical gap in awareness and clinical dialogue about behavioral symptoms in Alzheimer dementia. Misidentifying agitation as a cognitive symptom can delay appropriate intervention and amplify caregiver stress. Clinicians in long-term care, geriatrics, and primary care must differentiate agitation from cognitive decline and proactively screen for neuropsychiatric symptoms.
For patients and families, early recognition and open discussion with health care providers can mitigate crisis episodes, reduce burnout, and improve care outcomes. The survey reinforces the need for education and multidisciplinary support, including behavioral management strategies, counseling, and community outreach.
Health systems should also address caregiver burden as a public health priority by integrating caregiver screening into Alzheimer care pathways and offering respite and mental health resources.
"Without support from others, the ongoing challenges can feel overwhelming," said Lamia Scott, a caregiver and collaborator with Otsuka and Lundbeck. “If you know someone living with agitation in Alzheimer’s dementia, checking in on their caregiver and offering community support can make a world of difference.”
Conclusion
The Agitation Blindspot in Alzheimer’s Care Survey exposes how stigma, misunderstanding, and caregiver fatigue create barriers to proper dementia management. The report urges clinicians and caregivers alike to recognize agitation early, seek medical guidance, and foster open communication to improve quality of life for both patients and families.
Reference
Alliance for Aging Research. The agitation blindspot in alzheimer’s care survey: how stigma, misunderstanding & emotional burnout are affecting caregivers nationwide. November 2025. Accessed November 20, 2025. https://www.agingresearch.org/wp-content/uploads/2025/11/APPROVED_11US25EUC0057-Agitation-Survey-Report-1.pdf
