Pearls for Primary Care: How to Talk About Agitation in Alzheimer Disease with Caregivers

"... avoid focusing solely on cognition when assessing an Alzheimer’s patient. Always think about behavior as well. If there are agitated behaviors, don’t immediately assume they’re caused by Alzheimer’s disease."

A survey by the Alzheimer Association in 2020 revealed that 82% of primary care professionals "believe they are on the frontlines of dementia care." At least half (53%) reported they fielded questions about dementia every few days.¹ Another study at about the same time found that 64% of older adults who are diagnosed with dementia in the US received that diagnosis from a primary care clinician.²

George Grossberg, MD, is a geriatric psychiatrist and involved in research for novel treatments for neurocognitive diseases, including Alzheimer dementia and currently for agitation in Alzheimer disease. In a recent interview with Patient Care,® editors asked him to leave the website's primary care audience with a few clinical pearls about caring for the ever-expanding number of adults on their clinical panels that have or may have early signs of dementia. His key message was to focus on behavior - it's not all about cognition. He offers examples in the short video above.

The following transcript has been lightly edited for clarity and style

Patient Care: Primary care clinicians are often the first to identify Alzheimer disease or the first clinician a family member will confide in. Would you share some clinical pearls on caring for an adult with Alzheimer and possibly with agitation in this frontline setting?

George Grossberg, MD: The first piece of advice I would give is to make it a point to ask. When caring for Alzheimer’s patients and their families, ask about behavior at every visit. Talk to the care partner—often a spouse or an adult child—and ask: “How’s Mom? How’s Dad? How’s their behavior? Have you noticed any personality changes or concerning behaviors?”

Families may not volunteer this information unless prompted. Sometimes there’s embarrassment or stigma around discussing these changes. So I suggest really focusing on any behavior change they might have noticed, and not using the word "agitation," because they aren't likely to use that term. They might say things like, “I’m really worried about my mom. She used to be so calm and patient, but now she has such a short fuse. She screams or gets angry over the smallest things. This isn’t her, and it’s been happening for weeks. It's really making it hard for me to continue to care for her.” If we don’t ask, they may not bring it up, and that can delay addressing these issues.

Yes, we’re trying to educate families and caregivers to speak up about behavior changes during appointments, but there’s still a long way to go. It’s our responsibility as health care professionals to lead that conversation.

Another key point is to avoid focusing solely on cognition when assessing an Alzheimer’s patient. Always think about behavior as well. If there are agitated behaviors, don’t immediately assume they’re caused by Alzheimer’s disease. That’s why we developed a decision tree with the Gerontological Society of America for primary care providers.

This decision tree emphasizes considering other potential triggers first:

• Pain: Is it a source of distress?
• Infections: Could there be something like a urinary tract infection?
• Medications: Are there drugs that might be causing adverse effects?
• Delirium or depression: Could these conditions be contributing to the behavior?

Each of these possibilities requires different treatments. If you’ve ruled out these causes and the behavior seems to stem from Alzheimer’s itself, then always consider nonpharmacological interventions first. Look at environmental or behavioral strategies that could help manage the agitation.

If those approaches don't work or you don't have the luxury of time or the resources to implement them, pharmacotherapy may be necessary. We now have one FDA-approved medication for agitation in Alzheimer’s, as well as a promising pipeline of treatments under development. We do have medications that can be and are used off-label, though evidence for their efficacy is often limited. These can help bridge the gap while we await better therapies.

George T Grossberg, MD, is the Samuel W. Fordyce professor and director of Geriatric Psychiatry in the Department of Psychiatry at Saint Louis University School of Medicine. He is a past president of the American Association for Geriatric Psychiatry and of the International Psychogeriatric Association. Grossberg's research focus includes behavioral symptoms in Alzheimer disease and novel therapies for neurocognitive disorders.

References

Drabo EF, Barthold D, Joyce G, Ferido P, Chang Chui H, Zissimopoulos J. Longitudinal analysis of dementia diagnosis and specialty care among racially diverse Medicare beneficiaries. Alzheimers Dement. 2019;15(11):1402-1411. doi:10.1016/j.jalz.2019.07.005 

2020 Alzheimer’s disease facts and figures. Alzheimers Dement. 2020;16(3):391-460. doi:10.1002/alz.12068