An Interview with AARP’s Family and Caregiving Expert, Amy Goyer

As we head into the final days of fielding our caregiver survey, we were thrilled to have the chance to speak with Amy Goyer, AARP’s Family and Caregiving expert and author of “Juggling Life, Work, and Caregiving.” Amy is a nationally known expert on aging and families, specializing in family caregiving, grandparenting and multigenerational issues. She has spent more than 35 years advocating for and serving older adults and families. A recognized media authority, she has appeared on Good Morning America, Today, CBS This Morning and numerous other broadcast and print media outlets. She has been a caregiver her entire adult life, and is currently caring for her dad, Robert, who lives with her. Below is our conversation about caregiving, medical decision making, and what caregivers need more than anything.*

[*Interview has been edited for purposes of length and clarity]

 Tell us a little about your own experience: how did you come to be an expert in this world of caregiving, both personally and professionally?

AG: Originally I was a music therapist, and I started working in the field of aging while I was still in college. My first job was in an adult daycare center. Then I worked for the Ohio Department of Aging, and eventually went to work at AARP. On the personal side, I had become the caregiver for three of my grandparents. For my dad’s parents I set up home-based care and services. Then my mom had a stroke at age 63. My dad kept up the finances for my grandparents and he also became the caregiver for my mom. My sisters and I traveled out to Arizona to help with my mom but, as my Dad aged, he had his own ailments: he had to have a hip replacement and my mom couldn’t drive after the stroke. I went out to Arizona for extended periods to help but, about 10 years ago, my dad started showing signs of dementia and was eventually diagnosed with Alzheimer’s. I had one sister who lived near my parents, and I began making more trips to Arizona to help. Eventually, I quit my job and became an independent consultant, so I could have a more flexible schedule and work from Arizona part of every month. .

It was when we asked my dad to stop driving because of his glaucoma and dementia that I decided to make the move to Arizona. My parents moved to a senior community and I moved into their home, just a few miles away. After a series of setbacks (my mom had many falls and fractured her spine, and my dad was hospitalized for an infection and his dementia accelerated), they needed 24-hour care. So I moved them back into their home with me six years ago. They couldn’t be alone, so moving them back into the house made sense—assisted living isn’t 24-hour 1:1 care. My mom died a year after they moved back in. My sister and her two sons moved from Ohio to help care for dad, and eventually moved into the house next door. My dad is 94 now and has advanced Alzheimer’s. My sister helps care for dad four days a week and is there when I have business travel.

I know it is a lot and I do get exhausted, but I have learned how to take care of myself.

What do you see as the greatest areas of unmet need in supporting caregivers?

AG: Help! Most caregivers need more help, hands, respite. The more intensive the disease, like dementia, the more help is needed for caregivers. And you need to connect with other caregivers. AARP has an online caregiving community that’s available 24/7 at the convenience of caregivers because we learn from each other, but we can get too busy or it’s too hard to go out to meetings. It’s important to share.

We also need to give training to caregivers, including medical/nursing tasks like how to transfer someone out of a wheelchair or manage wound care. Forty-six percent of caregivers are providing medical/nursing care – as I did when Dad temporarily had a feeding tube while awating throat surgery. But we don’t always get training – I only had about 5 minutes of training on that feeding tube. We had home care nurses to help and show me what to do, but not everyone has the support they need and knows how to access it.

AARP has also put together state legislation known as the Caregiver Advise, Record, Enable (CARE) Act. It’s known by different names in somes states, but it ensures that the name of the family caregiver is on the medical records, and that the caregiver is informed when patients are discharged and has the necessary training for medical tasks when the patient goes home. Legislation has passed in 40 states and territories, including DC, Puerto Rico and the Virgin Islands, and they are still working on passage in the remaining states.

 Do you see distinctions in need among different caregiver groups?

 AG: Absolutely. AARP and the National Alliance for Caregiving have published the Caregiving in the US report profiling caregivers every few years. It looks at difference in ages, ethnicity, intensity of caregiving and other things. We recently looked at the spousal caregiver, and found that they tend to be more vulnerable, tend to have less help and tend to be older. We also found that 1 in 4 caregivers are millennials, whose needs and tools are different; for example, millennials may be more tech-savvy, so they may be more likely to look for online resources.

What is your sense of the physician/caregiver relationship?

AG: There is still a long way to go with the doctor/patient/caregiver relationship. My biggest complaint, personally, is that the doctors talk to me and ignore my dad. The other perspective is that the doctor won’t tell the caregiver anything. So I hear both sides. I have had some doctors get frustrated with me because of my list of questions, but some doctors think that is great. It should be a team approach, and everyone needs to acknowledge the role of the caregiver.

My mom had aphasia due to her stroke and had trouble talking, so the doctor would talk to me. But I would turn to her and say, “Mom, do you have any more questions?” At the end of the day, it’s about having respect for everyone.

I think it begins in med school. There should be more effort put into conveying the role of the caregiver. How do you get across to doctors what a caregiver goes through? They need to know that patients do better with someone looking out for them; for example, it will lower re-hospitalization rates if the caregiver makes sure patients are taking their medicine. You have to make it clear to the doctor what your role is, but it needs to be a team approach.

How do you see caregivers managing (or not) the complexity of today’s healthcare system, particularly when dealing with multiple health issues, specialists and services? What would help them?

AG: The biggest complaint is that the doctors don’t talk to each other. The caregiver is juggling all the different doctors and it’s hard to coordinate. Helping caregivers learn how to advocate for loved ones in the health care system can help, and also providing trained patient advocates in the health care system. Electronic health records can also help.

Our early findings indicate that 87% of caregivers are very involved in medical decision making. What challenges come up for caregivers in this process? Are there areas that you think work better than others?

AG: Medical decisions are complicated, and not always clear. They present a huge pressure on caregivers to make the “right” decision for someone else. So try to learn all you can and ask a lot of questions. It can be hard because we don’t always know what questions to ask. Talking with other caregivers who have been in similar situations may be helpful because they can suggest questions to ask health care practitioners.

When it comes to medical decisions, if someone is ill, they often can’t take in all the information so they need a caregiver to listen, make notes, narrow down the choices, advocate for them.

As a caregiver, you make so many decisions daily, but medical decisions can be life or death—there is so much more pressure. It is very stressful. It may be a complicated health picture and not straightforward, but you have to ask, “What do I need to know, and what is the best information available?” It’s a skill you learn over time. Often there is not one “right” decision. Your choice may be the lesser of two evils but, over time, you start to realize that the best decision is made based on the information you have at the time. And a lot of decisions just lead to the next decision.

Also from our research, it seems that caregivers are not very knowledgeable about clinical trials. Where do you think that disconnect occurs?

AG: Clinical trials aren’t widely discussed in the news. If you know about them, it was probably your doctor who told you, or you signed up to receive alerts about clinical trials, or you find information on a website. Same goes for research. Disease networks send you information but otherwise, the average consumer doesn’t know about participating in medical research.. Often, the caregiver who has the “hands on” daily care doesn’t have time to do research on clinical trials. That could be a role for another family member to do research online. But overall, I think clinical trial information is harder to find. It really depends a lot on whether your doctor keeps you informed.

In a recent Twitter #carechat there was a lot of discussion about family dynamics. Can you talk about how that comes into play in medical decision making–when it works and when it doesn’t?

AG: This question is important. It can be helpful to have more than one person involved in the medical decision process, but it can also make it harder. In the end, there is one ultimate decision maker: usually either the person with the power of attorney or the patient. If you can have reasonable conversations among the family and caregiving team it can be great, but sometimes there are too many cooks in the kitchen, so getting concensus is harder. When some feel strongly one way and the others feel the opposite, it can be polarizing with opposite viewpoints. In some cases, you may need to bring in a third-party mediator.

What tools and training would be most helpful for the caregiver?

 AG: I think training needs to start with the basics medical tasks: how to walk with a walker, how to get in and out of a car, proper skin care, toileting and bathing. Even with home care nursing coming in, you need to know the basics. AARP has started the Home Alone Alliance, which provides videos about basic medical/nursing tasks. Even if you have been taught, you can go back and watch them several times as a refresher. Each person and situation is unique of course, but through the videos we can learn the basic parameters and then adapt for our situations. For example, a video can show how to get in and out of a car, but every car will be slightly different.

There are some areas that are harder to tackle. I am frequently asked by caregivers how to help their loved one with toileting. It can be embarrassing for our loved ones and a little overwhelming for caregivers. But it is a common caregiving task, and it can lead to sores and infections if not done right. So finding ways to train caregivers about these very personal tasks can be challenging.

Tools for medical decision making should start with a framework – what are the steps to go through? There is an article on our website: Questions to Ask the Doctor. You should take into account who has legal authority (power of attorney) and what are your loved ones’ wishes. You should have a Five Wishes document or living will—gather all the information available to you. Caregivers need to be confident they have done all they can to understand and follow their loved ones’ wishes when making a decision, and not just blindly do whatever the doctor says.

When my dad had a second diverticulum pouch in his throat, surgery did not seem an option because of his congestive heart failure. My sister said that we wouldn’t go the surgery route, so why even meet with the surgeon? But I wanted to meet with him to ask, if we didn’t do surgery, what were the other options? How could we keep him from choking? I saw value from meeting to get all the information that was available. Then I know I’ve left no stone unturned—I’ve done all I can do to help my dad.

AARP offers a variety of great resources for caregivers. Check them out here:

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