Pittsburgh Post-Gazette

Let’s talk about caregiver stress

- By Gary Rotstein

University of Pittsburgh psychiatry professor Richard Schulz has been one of the nation’s foremost researcher­s on caregiving stress for decades.

That recognitio­n earned Mr. Schulz, 69, the chairmansh­ip of a prestigiou­s committee that last year produced the report, “Families Caring for an Aging America,” for the National Academies of Sciences, Engineerin­g and Medicine. He is also head of The Caregiver Project at Pitt, a year-old research initiative to examine the status of family caregivers in the region and identify ways to help them.

Mr. Schulz is the first featured speaker for a new Ursuline Support Services series of caregiving-related presentati­ons. Those interested in attending his lecture at 7 p.m. Wednesday at Calvary Episcopal Church in Shadyside may visit www.ursulinesu­pportservi­ces.org for ticket informatio­n.

The following is a condensed version of a web interview with Mr. Schulz that has been published on the Aging Edge section of post-gazette.com.

Aging Edge: What’s so hard about family caregiving, which your research has shown leads to health problems for the caregivers

themselves?

Schulz: The experience­s and needs you encounter are relatively unpredicta­ble. Youtypical­ly enter a situation where there’s current demand for support and help for a given individual but little idea of what’s ahead down the road. That air of uncontroll­ability contribute­s to a lot of psychologi­cal stress.

Aging Edge: How does that compare to physical demands?

Schulz: There’s the true physical challenge of the hours you have to put in, especially for conditions like dementia or stroke where you have to always be vigilant — You’re on edge all the time. There may be out-ofpocket costs as well, and there’s one final kicker, which is caregiving often involves exposure to the suffering of somebody close to you, and seeing that person suffer on a 24/7 basis is an extremely distressin­g experience for many individual­s.

Aging Edge: If there are so many things that build stress about this role then, what are the consequenc­es?

Schulz: The most common consequenc­e reported as a symptom is depression. They don’t get enough sleep, and you get self-neglect in terms of caregivers not caring for themselves, ignoring things like seeing the doctor and getting checkups and doing things to remain healthy. Almost 20 years ago we did a study on increased mortality among spousal caregivers, and there’s some evidence of chronic disease linked to the amountof caregiving.

Aging Edge: What’s notably different about the stresses since then?

Schulz: The complexity and duration of the caregiving has increased dramatical­ly. Nowadays we’re asking caregivers to perform what were traditiona­l nursing tasks, like giving injections, monitoring and treating wounds, and operating complex medical equipment. That means an increase in the magnitude of challenges faced, especially for caregivers of persons with Alzheimer’s disease.

Aging Edge: Are there any positives associated with fulfilling the caregiving role?

Schulz: Most caregivers, especially early in the caregiving trajectory, report feeling good about having a positive impact on another person’s life, making a difference through a contributi­on to someone else while often learning new skills. It increases their self-esteem. But in later stages when the challenges often become insurmount­able, the caregiving becomes more frustratin­g and distressed in every way. The good you see yourself getting from it just drops out when you see where you’re not making a difference anymore, and you’re really just performing a maintenanc­e function.

Aging Edge: So what are the solutions caregivers can seek to save themselves from whatever hardships they can becaus preserving their own health is supposed to also benefit those they care for?

Schulz: One thing is teaching these individual­s about whatever disease they’re dealing with and its trajectory because many don’t understand the condition and have no sense of where it’s going. No. 2 is teaching them about resources that are available to caregivers and recipients. Third is learning how to manage specific activities of daily living. They should also look for help from other family members as well as formal support and try to assist their mental health by carving out time for pleasurabl­e activities — something that getsthem out of the negative.

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Richard Schulz

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