From Caregiver to Peer Specialist: A Job Based on Life Experience

I recently received two emails from caregivers that succinctly summarized a pervasive but largely unaddressed problem. Spoiler alert: Peer specialists are a big part of the solution. But first, some background.

"Caregiver burden" is a frequently used term but has different meanings. For example, health care professionals often acknowledge the caregiver burden but see it as resulting from the caregiver's prior relationship with the patient, the tasks of caregiving or the friction that can arise in the family, often over money.

Yet family caregivers often say that the real burdens occur when the caregiver is unprepared for the role and does not know how to navigate our complex and confusing care system. Caregiving may mean juggling other responsibilities such as jobs and child care. 

Caregivers often feel it is like climbing a mountain without a map or guide. In a more holistic system of care, a trained layperson with life experience would help the caregiver develop resiliency skills and access services that address non-clinical needs and would also reduce the burden on providers.

The first email described frustrations in seeking information from health care providers about an older relative's care. The author prefers to remain anonymous.

"My father is 89 years old and has multiple medical problems. I've filed a patient representative form with each doctor, but when I call to make sure appointments are scheduled and to understand Dad's next steps in treatment, no one returns my calls."

"I called the hospital and asked to speak to a patient representative, but the hospital said that I first had to try to work things out with the clinic manager. How am I supposed to do that if no one returns my calls?"

The following excerpt is from the second email from John Poole, who lives in southern New Jersey. He gave up his job to care for both parents, who had suffered strokes.

"I was a family caregiver to my parents for six years. Caregivers are often cited as the backbone of the long-term care system. But they often do not receive the support they need at the beginning of their journey."

"Caregivers may reduce their work schedules or withdraw from the workforce completely to help a loved one. This action carries with it serious implications that I had not considered thoroughly when I made my decision." 

"Because the time spent caregiving and the diversity of a family caregiver's daily tasks are not known to those without personal experience, caregiving is often viewed as a minor life disruption or at best, a part-time job. This is simply not true. I want to use my experience to help others better manage their roles as caregivers to loved ones."

A confirmation of caregiver complaints comes from the New England Journal of Medicine's Catalyst Report, "How Health Systems Can Care for Caregivers," published in July 2021. Based on a survey of 386 health care system executives and clinicians, the report notes that only 23% of respondents say they consider unpaid caregivers part of the care team, yet 83% say they should be. 

Nirav. H. Shah, MD., a co-author of the report, commented: "The biggest untapped opportunities for health system administrators and clinical teams to impact the health and wellness of their patients— and to truly get patient-centered care — is to care about unpaid caregivers."

Insufficient staff (seen as social workers) was the most cited reason (52%) for not doing more, as well as lack of leadership commitment (44%).

Leading health care experts and family caregivers agree about the need for collaboration. And a solution is in plain sight or, at least, not far away. The writer of the second email cited above has identified it. 

It involves utilizing the "lived experience" of former caregivers to guide and counsel caregivers through the many stressful choices and events they encounter and helping them focus on their health and wellness as well as that of their family members or friend. 

In other words, the health care system can achieve benefits for all by building and supporting solid programs based on peer-to-peer communication. This does not replace the support provided by care managers and navigators, but adds valuable knowledge and real-world experience and does so at less cost.

Peer Specialist Services (PSS) in behavioral health programs, a widely accepted evidence-based practice, shows the way, if not all, of the details.

As Gerard Niewenhous, a health policy consultant in Minnesota, explains, "A Peer Specialist provides support to caregivers, facilitates access to health and community-based services and advocates when the health care system is unresponsive. This relationship is based on respect, empathy, positivity and openness."

These programs are supported by the federal agency SAMHSA (Substance Abuse and Mental Health Service Agency). In addition, every state has a program that trains, supervises and certifies candidates for this position. PSS has demonstrated that it reduces hospitalizations, improves stays in the community and emotionally benefits caregivers and their family members.

Peer specialists are paid. Salaries vary by region and program, but the hourly rate is generally in the $20-23 range, with full-time jobs paying $40,000-$50,000 with various benefits. Further, many programs have opportunities to advance to supervisory levels or receive additional training.

Moving from behavioral health to general medical conditions such as dementia, diabetes, mobility problems, ALS, trauma and others has been slowly gaining acceptance, but that is changing. 

Staff shortages in health care facilities have opened options for the kind of counseling family caregivers need at a time when more typical staff roles are overburdened. And peers can provide a valuable service that frees nurses, doctors and therapists for other tasks. 

Hospital At Home programs are rapidly gaining acceptance and offer an opportunity to include peer specialist support for caregivers whose work at home replaces hospital staff. Some health care providers have adapted the behavioral health model of peer specialist services to chronic medical conditions.

For example, the Veterans Administration (VA) has two programs for caregivers: the basic Program of General Caregiver Support Services (PGCSS), which provides peer support mentoring, skills training, telephone support and online programs.

The Program of Comprehensive Assistance for Family Caregivers (PCAFC) has more stringent eligibility requirements for veterans and caregivers. It provides a broader range of services, including a stipend for the caregiver based on the region and a base of federal GS4 payments. Both programs offer peer specialist support services. More information on both programs is available on the VA website and in a YouTube video.

Karen Coppola from northeastern Massachusetts, a Certified Dementia Practitioner ( CDP) who privately coaches caregivers in understanding dementia, managing behavioral challenges and utilizing effective communication techniques, is also a volunteer peer mentor with the VA Caregiver Support Program. She was certified by the National Council of Certified Dementia Practitioners in Sparta, New Jersey.

In an email, Coppola said, "The mentoring I do is highly rewarding. I know I'm making a positive impact on family caregivers who are caring for veterans with memory loss. Caregivers say, 'Where have you been all this time, and why didn't anyone tell me about you and what you do?'"

In another exchange of emails, Suzanne Mitchell, a family physician in Boston, emphasized that peer support comes in various varieties and titles.

She mentioned alternative names such as community health worker, coach, mentor and peer specialist. In her diabetes education program, patients have shared medical appointments to learn how to better manage diabetes from others living with the disease.

Mitchell hopes that in future efforts, both the patient and caregiver can participate in shared appointments so the needs of both patient and caregiver can be met with peer support. She has participated in research that has validated the inclusion of caregivers in the transition from hospital to home to reduce hospital readmissions.

Despite the proven worth of peer-to-peer communication, identifying the available opportunities requires research, persistence and creativity — all skills that many caregivers have developed to fill in the gaps in health care information and services.

Here are some suggestions to get started:

1. Assess yourself. What are your strengths as a person and worker? Do these fit well with the role of peer specialist? For example, are you comfortable talking to people with different backgrounds and values? Can you suggest solutions to miscommunication without blaming the caregiver or the health care professional?

2. Keep a notebook for all the contact information and items for follow-up.

3. Identify local agencies and sources of information. Each state and county or large city has government agencies that will have some relevant information. Start with the Departments of Aging, Health, and Mental Health. Private employment agencies may serve clients who need peer specialist support.

4. Identify community-based agencies that may have or be willing to create peer support programs. These may be local chapters of national organizations or local bodies. They may be general caregiving organizations or groups focusing on a specific disease.

5. Identify local training sources, such as community colleges, nonprofit agencies, etc. Consider enrolling in a course for peer training, even though you do not have a job yet. Many behavioral health peer training programs include sessions on roles and responsibilities, person-centered care, recovery and resilience, communication skills, and planning and service delivery. They could be adapted to include chronic health conditions by adding sections on specific diseases.

6. Look for other peer groups. For example, the Peers for Progress program at the University of North Carolina has information about U.S. and international groups.

7. Ask other caregivers to meet key government or community leaders. With their involvement, you might be able to get a local foundation to fund a pilot project.

8. Check websites such as Indeed.com or Linkedin for current job openings.

9. Stay focused and think positively. Those skills got you through caregiving and will help you find the next step.