Exploring the Impact of Caregiver Depression on Patients With Dementia


The neurohospitalist and assistant professor of neurology at the University of California San Francisco spoke about how caregiver depression is an important risk factor associated with increased healthcare use among individuals with dementia.

Dr Elan Guterman, MD

Elan Guterman, MD, Assistant Professor of Clinical Neurology University of California, San Francisco

Elan Guterman, MD

The results of longitudinal cohort study suggest that among patients with dementia, caregiver depression appears to be significantly associated with increased emergency department use, which, if addressed, could improve health outcomes and lower costs.

The study looked at data 663 dyads from the Care Ecosystem Study, which examined a supportive care intervention for patients with dementia and caregivers. Among the dyads, 84 caregivers (12.7%) had depression at baseline and 368 (55.5%) had high caregiver burden. After adjustment, caregiver depression at baseline led to a 73% increased rate of emergency department presentation in the subsequent 6 months.

Caregiver depression was associated with higher rates of emergency department use among patients with depression, which indicates an important risk factor for healthcare use. Investigators, led by, Elan Guterman, MD, neurohospitalist and assistant professor of neurology at the University of California San Francisco, report that by overlooking caregiver depression, clinicians may be neglecting an important component of care.

To further explore the clinical implications of the data, NeurologyLive spoke with Guterman in an interview.

NeurologyLive: What was your motivation for conducting the study?

Elan Guterman, MD: The motivation for this study is that patients with dementia are really high utilizers of healthcare resources and a big one is use of inpatient and emergency department services. We have long thought about ways to improve the quality of care and decrease preventable use both for the benefit of the patient as well as lowering our healthcare costs overall, but in general we haven't focused as much on the role of the caregiver. Many of these patients with dementia have caregivers which are intimately tied to how they interact with the healthcare system.

The data from this study was taken from a trial looking at how impacting or interacting with caregivers can impact dementia care overall, and this study was using that data to understand how the caregiver and specifically caregiver depression could impact use of the emergency department for these patients with dementia.

What did the data show?

What we found, which was known already, is that caregiver depression is extremely common and that what was new about this study is that those patients with dementia who have caregivers who are depressed have increased rates of emergency department utilization.

In a 6-month period or in a year period those patients who have depressed caregivers are going to go to the emergency department much more. A patient with dementia is going to the emergency room about 1 time per person year and the rate of emergency department use is going to be increased by over 70% in patients who have depressed caregivers.

I should also add that one of the questions that it asks is how about the effect of using the emergency department on caregiver depression overall and we also found that for those who use the emergency department a lot, when you then look at subsequent rates of caregiver depression, those are also increased.

Can you speak about the importance of a team-based approach that’s needed to provide this type of care?

Part of this is certainly counseling caregivers about this team-based approach, but I think the other piece of it is communicating with healthcare providers that when you are taking care of a patient with dementia that you are taking care of the patient as well as their entire team supporting them, most importantly the caregiver.

As much as it requires counseling the caregiver about knowing that this is important, it also requires counseling the rest of the healthcare world and all of the various practitioners who are caring for these patients not to ignore the importance of caregiver health especially if we find out that caregiver depression is something that we actually have an ability to modify, so that if we develop an intervention that can lower the rates of caregiver depression and allow caregivers to improve their mood and their feelings of self-efficacy that we can improve the health and hospital resource use of these patients.

How can providers best work with patients and caregivers to ensure that caregivers are not suffering from depression?

This study used a depression assessment tool called the PHQ-9 and there are a variety of different depression assessment tools out there—I don't think there is a specific one that's important.

First it’s important to probe to see whether or not somebody is having issues with their mood and if they would like to explore it, offering the opportunity to do so and then more quantitatively assessing their amount of depression I think is extremely helpful for identifying the caregivers who are in need of more support.

Transcript has been edited for clarity.


Guterman E, Allen E, Josephson A, et al. Association Between Caregiver Depression and Emergency Department Use Among Patients With Dementia. JAMA Neurology. 2019. doi: 10.1001/jamaneurol.2019.1820.

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