Q&A with John Schall, CEO of Caregiver Action Network

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Thumbnail of male, Photo courtesy of Caregiver Action Network, used with permission

John Schall, CEO of Caregiver Action Network/Photo courtesy of Caregiver Action Network, used with permission

 

To help raise awareness of the issues facing caregivers during National Family Caregiver Month, Avanir conducted a Q&A with John Schall, Chief Executive Officer of the Caregiver Action Network (CAN). CAN is the nation’s leading family caregiver organization working to improve the quality of life for more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.

John Schall has been Chief Executive Officer of the Caregiver Action Network since 2012. John has more than 25 years of bipartisan experience in senior positions with the Executive and Legislative branches of government. He is a public policy and communications professional with noted expertise in a wide range of policy fields, including health care, labor, education, economic development, taxation, and budget policy. Prior to joining CAN, he was Deputy CEO of the Parkinson's Action Network.
 

Question: How does Caregiver Action Network help caregivers and what types of resources are available?

CAN was created to educate, support, empower, and speak up for America's 90 million family caregivers so that all caregiving families can have a better quality of life. CAN advocates for policies and legislation that support family caregivers. We try to call attention to the hardships that family caregivers face and ways in which we can ease some of their burden.

We offer educational resources on CaregiverAction.org on a variety of topics and disease states. In just the last year, we’ve released a series of materials on stroke care, mental health, heart failure, the behavioral and psychological symptoms of dementia, and caregiving around the clock. We have an area on our website for caregivers for loved ones with COPD, Alzheimer’s cancer, and rare diseases.

To support family caregivers, CAN offers 10 Tips for Family Caregivers, materials stressing the importance of self-care, and a care community in which caregivers can connect with other caregivers. CAN’s Caregiver Help Desk offers free support to caregivers via phone, e-mail, or live chat. Caregivers contacting the Help Desk can be pointed to resources that can help them, support groups, or just have someone to talk to. Since its start, Caregiver Help Desk had fielded more than 10,000 inquiries from caregivers across the country.

Our newest initiative, the #CaregiverAnd campaign, is an effort to get caregivers to celebrate the identities, interests, and passions that enrich their life. Often, one’s role as caregiver takes over. Family caregivers may focus so much on taking care of their loved one that they disregard the hobbies and interests that make them who they are—and this campaign hopes to change that. A person’s sense of self makes their life complete and is an essential component of self-care that can ultimately prevent caregiver burnout and depression.

All of CAN’s resources are available to caregivers free of charge.
 

Question: What are the biggest issues that caregivers have faced during the pandemic? 

The pandemic has affected everyone, but caregivers have experienced some additional struggles. Many of the programs and services which caregivers used to assist them with their caregiving stopped during the pandemic such as adult daycare programs. Medical visits became more complex with the move to telemedicine. During the height of the pandemic, caregivers whose loved ones needed to see a doctor in person were not able to be with them and were not allowed to visit if they needed to be hospitalized. With COVID-19’s spread through nursing facilities, many caregivers moved their loved one out of nursing homes or delayed placing them in one. This led to an increase in the need for social services, placing greater demand on an already over-taxed system.
 

Question: Can you share a little more information about how the Lighting Your Way: Dealing With the Behavioral Symptoms of Your Loved One’s Dementia tool created by Caregiver Action Network helps caregivers better understand some of the symptoms that can accompany dementia and what can be done about them? 

Lighting Your Way focuses on the lesser-known symptoms of dementia and Alzheimer’s. When a loved one is diagnosed with dementia or Alzheimer’s, certain symptoms are expected—like forgetfulness, confusion, and memory loss. But there are other symptoms that are not as well known. Symptoms like agitation, aggression, paranoia, hallucinations, delusions, and changes in sleep habits and appetite can be unexpected and alarming.

This resource aims to educate caregivers on what to expect and what can be done. We describe the different types of behavioral changes a loved one may exhibit and what conditions other than dementia could possibly be the cause. One section lays out the type of information that needs to be reported to a loved one’s doctor, some possible treatment, and the different people on the healthcare team. Another gives suggestions on what can be done at home that might make things better and more comfortable for the loved one—as well as how to deal with certain specific symptoms. The final section emphasizes the importance of taking care of yourself—in order to be a better caregiver for one’s loved one.
 

Question: What advice you would give someone who is a new caregiver for a family member?

I would start out by reading as much as I could on my loved one’s condition or disease. Educate yourself on their condition, different treatment options, and what is likely to happen as time goes on. Contact your loved one’s health insurance provider to find out what’s covered under their policy and what isn’t. If your loved one isn’t able to take care of their finances, you may need to get a durable power of attorney so you can help with financial matters. I would look into the social and community services available in your area. In some cases, you may need to review legal documents and have your loved one sign a health care proxy giving you the authority to make treatment decisions for them if they are unable and an advance directive detailing what your loved one does and does not want with regard to their medical treatment.

We have an area on our website specifically for new caregivers, with many resources on everything from medication checklists to finding a support group to help a new caregiver.
 

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