A Separate Piece

by Erika Lesser and Lori O’Neill

For too long, Agitation in Alzheimer’s Disease (AAD) has been a baffling—and devastating—aspect of the disease. Treatments designed specifically to address agitation offer meaningful and measurable solutions but require HCPs to see AAD for what it is—a unique condition that is a separate piece within the puzzle of Alzheimer’s Disease (AD).

From progressive decline rises unpredictable chaos and devastating cost

Until recently, AAD was considered an expected—and accepted—manifestation of Alzheimer’s disease. In addition to cognitive decline, many patients present with increased restlessness or anxiety, unpredictable aggression, and even violence.1,2 Patients with AAD can become a danger to themselves and others, as well as cause their loved ones to risk/incur physical injury, lose time at work or with family, and suffer depression or other mental illnesses.3,4 Past treatments fell far short of adequate abatement of symptoms—antidepressants were not very effective or antipsychotics “snowed” the patients, leaving them too sedated to engage in their environment.1,5-7 Recently, new medications have become available—and these treatments effectively address the symptoms of AAD. A remaining barrier is the well-entrenched fear, stigma, and a lack of understanding about the pathophysiology of AAD that inhibits effective and timely utilization. To recognize and manage AAD effectively, healthcare professionals and payers must recognize it as a separate condition from AD.8,9

With an established characterization only recently defined, prevalence estimates for AAD vary greatly in the literature, and so a large proportion of patients remain untreated.1,10-11,12 Unrecognized financial and emotional costs have catastrophic effects on caregivers and society. The evidence is undeniable—in a prospective cohort study in the United Kingdom, Morris et al reported that health and social care costs are approximately doubled once agitation has been diagnosed. In fact, the patient’s Neuropsychiatric Inventory (NPI)--a measure of delusions, hallucinations, agitation, dysphoria, anxiety, apathy, irritability, euphoria, disinhibition, aberrant motor behavior, night-time behavioral disturbance, appetite/ weight changes—score is positively associated with increased health, social care, and informal care costs. These findings were repeated in Finland, Sweden, Denmark, and Norway in addition to the UK. 13

So why isn’t agitation in AD given more attention?

The answer is complicated. First, many HCPs feel that agitation is just an amplified and expected behavior that all patients and caregivers must “deal with.” Expert characterizations offer conflicting ideas of the condition, confounding the challenge of an aligned description of agitation in AD. Caregivers are relied upon to report signs of AAD but lack the language or tools to do so effectively. Compounding this is the common stigma that any aggression exhibited is the caregiver’s fault. Further, the caregiver’s own desire to protect the patient often causes them to conceal their own physical and emotional injury. In short, doctors are waiting for caregivers to flag symptoms of aggression, and caregivers aren’t flagging them.

AAD is a separate piece of the AD puzzle

Today, HCPs prioritize cognitive and functional symptoms in the evaluation of status and/or disease progression in AD. Yet within the understanding and evaluation of Alzheimer’s disease is an opportunity to recognize a distinctly manageable set of behavior-based symptoms. By elevating behavior-based symptoms in the HCP diagnostic workflow—which would include mood disturbances, apathy, and agitation—HCPs can incorporate initial and regular evaluation of these symptoms. But just as important, HCPs need to recognize that AAD has a unique pathophysiology that requires a treatment plan and medication designed specifically to treat it. Anything less isn’t treating the whole person and solving the whole puzzle.

References:

  1. Ballard C, Corbett A. Agitation and aggression in people with Alzheimer’s disease. Curr Opin Psychiatry. 2013;26(3):252-259.
  2. Gauthier S, Cummings J, Ballard C, et al. Management of behavioral problems in Alzheimer’s disease. Int Psychogeriatr. 2010;22(30):346-372.
  3. Yaffe K, Fox P, Newcomer R, et al. Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA. 2002;287(16):2090-2097.
  4. Livingston G, Kelly L, Lewis-Holmes E, et al. A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. Health Technol Assess. 2014;18(39):1-226.
  5. Ballard C, Corbett A. Management of neuropsychiatric symptoms in people with dementia. CNS Drugs. 2010;24(9):729-739.
  6. Davies S Jc, Burhan AM, Kim D, et al. Sequential drug treatment algorithm for agitation and aggression in Alzheimer's and mixed dementia. J Psychopharmacol. 2018;32(5):509-523.
  7. Better Health While Aging. 5 types of medication used to treat sundowning & difficult dementia behaviors. https://betterhealthwhileaging.net/medications-to-treat-difficult-alzheimers-behaviors/. Accessed June XX 2023.
  8. Lindenmayer JP. The pathophysiology of agitation. J Clin Psychiatry. 2000;61(suppl 14):5-10.
  9. Jones E, Aigbogun MS, Pike J, Berry M, Houle CR, Husbands J. Agitation in dementia: real-world impact and burden on patients and the healthcare system. J Alzheimers Dis. 2021;83(1):89-101.
  10. Tractenberg RE, Weiner MF, Thal LJ. Estimating the prevalence of agitation in community-dwelling persons with Alzheimer’s disease. J Neuropsychiatry Clin Neurosci. 2002;14(1):11-18.
  11. Zuidema S, Koopmans R, Verhey F. Prevalence and predictors of neuropsychiatric symptoms in cognitively impaired nursing home patients. J Geriatr Psychiatry Neurol. 2007;20(1):41-49.
  12. Kverno KS, Rabins PV, Blass DM, Hicks KL, Black BS. Prevalence and treatment of neuropsychiatric symptoms in advanced dementia. J Gerontol Nurs. 2008;34(12):8-15.
  13. Morris S, Patel N, Baio G, et al. Monetary costs of agitation in older adults with Alzheimer's disease in the UK: prospective cohort study. BMJ Open. 2015;5(3):e007382. doi:10.1136/bmjopen-2014-007382.

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