Digital Health

Agitation: An Unspoken Aspect of Alzheimer’s Dementia

Authored by: John Kraus, Executive Vice President & Chief Medical Officer, Otsuka

Approximately 6.5 million Americans and their loved ones, friends, and caregivers experience the distress associated with Alzheimer’s dementia. One of the most troubling symptoms associated with this progressive, neurodegenerative disorder has received limited attention, even though it affects about half of all patients: agitation.1

Agitation associated with dementia due to Alzheimer's disease is one of the most complex and stressful aspects of the disease for both patients and caregivers. The symptoms of agitation may include excessive pacing, gesturing, profanity, shouting, shoving, and hitting, and the effects can have far-reaching impact.

Not only has agitation been associated with accelerated disease progression, increased risk of institutionalization, functional decline, and decreased quality of life,2 it’s also a cause of significant caregiver distress.

On average, caregivers may spend more than 20 hours a week helping patients with clinically significant agitation3. Furthermore, twice as many caregivers of those with dementia report emotional, financial, and physical difficulties compared to caregivers of people without dementia.4

The following passage taken from The Costs of Untreated Agitation: A Literature Review speaks to the devastating effect of agitation on caregivers – and the difficulties with sharing this aspect of the condition:

“Many times, personal stories involving Alzheimer’s gloss over the unseemly details of the journey. It is our version of pain management. But it does not do justice to the cruelty of the disease and the behavioral changes, like agitation, that isolate and demean the very dignity of a loved one that as a caregiver you vow to protect.  It is a secret we too often keep, even from other family members, until an uncontrolled and alarming episode threatens us harm as well.”  Meryl Comer, co-founder, UsAgainstAlzheimers and author, Slow Dancing with A Stranger: Lost and Found in the Age of Alzheimer’s.

Despite their unwavering efforts, caregivers may reach a point at which they feel they can no longer adequately or safely provide care for a loved one affected by agitation. Aggressive behaviors such as combativeness, destroying property, and being a danger to oneself and others negatively impact the quality of life for both patients and caregivers and are major predictors of admission to a skilled nursing facility or long-term care placement5.

To help reduce the effects of agitation, management strategies can include non-drug options, such as physical activity, touch and massage, and music. If medicine is required, management teams may consider drug therapy. However, an important dynamic to consider is how people living with agitation will access new drug treatments.

Notably, the Centers for Medicare and Medicaid (CMS) have a series of policies in place designed to curb any inappropriate use of antipsychotics in the elderly. These well-intentioned policies were implemented several years ago and currently do not contemplate the approval of an on-label indication for an antipsychotic for use in the elderly. As the treatment landscape evolves and FDA grants approvals, we want to ensure CMS policies are reflective of new options available to patients.

At Otsuka, we hold a deep respect for the value of every mind and strongly believe that effective treatment and management of neuropsychiatric symptoms such as agitation must be approached with the same priority and urgency as physical ones.  These are chronic diseases that warrant early, equitable, and accessible intervention.

As a leader in brain health, Otsuka is committed to providing value to the communities we serve by investing in products, corporate programs, policies, and advocacy efforts that help ignite conversations and raise awareness of agitation, reduce adversity and barriers to care, and create meaningful change for all.

This commitment is deeply rooted in our purpose to defy limitation, so that others can too. 

May 2023 01US23EUC0122

1 Halpern R et al. Using electronic health records to estimate the prevalence of agitation in Alzheimer disease/dementia. Int J Geriatr Psychiatry 2019; 34: 420–431 

2 Fillit H et al. Impact of agitation in long-term care residents with dementia in the United States. Int J Geriatr Psychiatry 2021; 36: 1959–1969

3 National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S

4 2023 Alzheimer's disease facts and figures, Alzheimer's & Dementia, 10.1002/alz.13016, 19, 4, (1598-1695), (2023)

5 Müller-Spahn F. Behavioral disturbances in dementia. Dialogues Clin Neurosci. 2003 Mar;5(1):49-59. doi: 10.31887/DCNS.2003.5.1/fmuellerspahn. PMID: 22034255; PMCID: PMC3181717.

The editorial staff had no role in this post's creation.