Richard Schulz: Leading caregiving researcher describes challenges



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. Also Pitt’s director of gerontology, he additionally is 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. Sept. 20 at Calvary Episcopal Church in Shadyside may visit www.ursulinesupportservices.org for ticket information.

Aging Edge interviewed Mr. Schulz in advance of his presentation to get his take on caregiving-related issues and challenges. (The interview has undergone editing for purposes of brevity and clarity.)

Aging Edge: When discussing the roles and burdens of family caregivers — the 17.7 million of them identified in the national report — who are we talking about and what is it they’re doing?

Schulz: They’re family members who are providing help and support, typically to older adults with disabilities and chronic disease. It’s support that might take place in the caregiver’s own home for people living with them, it might be support for family members who are down the street or across the country, and it includes support for people in settings such as assisted living or nursing homes. It’s usually defined by the number of hours they spend on a daily or weekly basis supporting their relative in activities of daily living, which includes instrumental tasks such as assisting with laundry, shopping, preparing meals, helping someone go to the bathroom, get out of bed, ambulate around the home and so on.

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

Schulz: The experiences and needs you encounter are relatively unpredictable. You typically 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. Lacking understanding of the health conditions is something that affects stress on an individual, and the daily grind of having to provide personal care is not a pleasant experience for many individuals. There may be out-of-pocket 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 amount of caregiving.

Aging Edge: Since you’ve been researching the topic for decades, what’s changed about it over that span of time?

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, which is much more prevalent than it used to be because of the increased longevity of older adults.

Aging Edge: The negatives sound overwhelming, but 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 distressing 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, since 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. Knowing how to do the tasks you’re presumed to be taking over is a key element to being an effective caregiver. 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 gets them out of the negative.

Aging Edge: You talk about getting formal help, but where does that come from?

Schulz: One of the big challenges caregivers face is coordinating with the health care and social support systems, which are so fragmented and siloed, and it’s very difficult even for a sophisticated person to figure out how to get help for themselves as well as the individual they’re helping. The new CARE Act in Pennsylvania should help, where the goal is to identify and assess caregivers at the point a patient is being released from the hospital, so the hospital system knows what the caregiver can and can’t do and presumably provides support teaching them what needs to be done.

Aging Edge: If that’s an example of a new government policy supposed to assist caregivers, what’s the track record of government help generally in this field?

Schulz: In terms of formal programs for caregivers supported by the government, they’re minimal. There’s money that provides modest support for caregivers, such as respite help, but it’s a drop in the bucket. These are very small programs compared to the needs.

Aging Edge: You headed up the National Academies report that a year ago called for a comprehensive national strategy, including new federal policies and financial assistance and putting into broad use some of the successful research findings. How would you describe the reaction to the report and what’s changed in the ensuing year?

Schulz: I was afraid you would ask that. I would have to say the impact of the report has been limited despite the fact that we’ve gone to a number of congressional hearings and met with a lot of staffers on the Hill and around D.C. My explanation for that is that things are chaotic in Washington, D.C., and this falls low on the totem pole. These kinds of issues are not getting the kind of attention they deserve.

Aging Edge: But you’re hoping to make a tangible difference through The Caregiver Project, the foundation-funded effort you’re heading up at Pitt. How so?

Schulz: Our ultimate goal is to both inform and change policy, through three phases. The first is to do some systematic review of research literature. The next is a survey trying to learn about the caregiver landscape in Western Pennsylvania, from over 1,000 caregiver interviews that have just concluded as well as a couple hundred interviews with care recipients. This will give us a local picture of where we stand in terms of what services are being, used along with what needs are or are not being met, along with addressing the usual questions about health effects. The third phase looks at actual implementation of the Pennsylvania CARE Act, trying to make it happen in a way that’s effective in including caregivers in discharge care planning.

Aging Edge: And you’re hoping that this focus on caregiving at Pitt and around Pittsburgh is something that could have broader national implications?

Schulz: We’re hoping to become a national center for policies and for how to support caregivers — not only what should be done but how you should do it. We hope to be at the forefront of developing concrete procedures and the tools and training mechanisms that will help caregivers in the future.

Gary Rotstein: grotstein@post-gazette.com or 412-263-1255.





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