Coaching Older Adults to Manage Depression: Program to Encourage Active, Rewarding Lives

More than 18% of the older adult population in the U.S. had symptoms of clinical depression in 2019, according to the Centers for Disease Control and Prevention. Older adults with low incomes are at particular risk of depression, heightened by health-related social and economic needs such as food and housing insecurity, lack of transportation, and inadequate access to health care services. Depression in older adults is often overlooked or misdiagnosed, and few receive medication or psychotherapy. The prevalence of depression in this population negatively affects health status and physical functioning, and contributes to higher rates of emergency department use, hospital admission, and nursing home placement.

Despite the prevalence of depression in older adults, there is a shortage of licensed behavioral health providers to serve this population. Another challenge is that older adults who are Hispanic, Black, or part of other diverse racial and ethnic groups may have less access to behavioral health services. They also may be less likely to seek behavioral health services due to cultural stigma or to receive it due to medical racism.

Background

In the late 1990s and early 2000s, clinicians and researchers at the University of Washington (U-W) Health Promotion Research Center and staff at the Seattle/King County Area Agency on Aging observed many older adults with untreated depression, as well as a shortage of clinical resources to address their needs.

In response, the Seattle/King County Area Agency on Aging (AAA) organized a network of housing organizations, senior centers, and groups serving African Americans, with the idea of shifting some mental health care from licensed professionals to trained staff at community-based organizations, such as community health workers (CHWs), according to Lesley Steinman, a research scientist at U-W’s Department of Health Systems and Population Health.

In the early 2000s, the Seattle team developed a program involving trained CHWs teaching clients about depression and self-management skills. The Program to Encourage Active, Rewarding Lives (PEARLS) has since spread across the country, with staff at more than 170 organizations in 32 states having received training in delivering the program. It is offered by nonprofit and government agencies, including AAAs, social service organizations, senior centers, and cultural organizations serving various racial, ethnic, religious, and LGBTQ groups.

“The idea was that given workforce shortages, we’ll never have a million clinicians to improve access to mental health care,” Steinman said. “We don’t need that. People without formal clinical training can be trained to talk about depression, screen for it, and do some brief interventions to help elders get better and connect them to additional care if they need it.”

Intervention

Older adults with possible depression are referred to PEARLS by primary care providers, hospital discharge planners, staff at community-based organizations, other medical or social service providers, or they contact the program themselves. Trained coaches talk with the clients in person at their homes or community centers, by phone, or by video connection about their depression and administer the PHQ-9 questionnaire, a screening tool that measures the severity of depression. Coaches conduct six to eight sessions, over four to six months, with PHQ-9 questionnaires administered at the start of each session. The sessions are weekly at first, then taper off to once a month to give participants a chance to apply the lessons. Coaches then can follow up with clients for three to six additional sessions.

“The PEARLS people are very flexible,” said Sue Lachenmayr, state program coordinator for the Maryland Living Well Center of Excellence, who trains PEARLS coaches in her state. “The PHQ-9 scale starts with the question of how often you feel depressed. That’s a hard way to open. Instead, you can start with how’s your sleep, how are you eating, and not get right into the question about depression.”

After determining whether a client has depressive symptoms and wants to participate in PEARLS, the coach teaches the clients skills to self-manage depression, Steinman said. One part is problem-solving — helping the client identify current stress factors and what they can realistically do about them, building on their sense of self-control and efficacy. The second set of skills is behavioral activation — building personal and social activities that are pleasurable and make the person feel better, using a list of 250 pleasurable activities to give the client ideas. “When people get depressed, they stop doing the things they enjoy,” Steinman said. “Maybe you used to enjoy dancing, but you had a stroke and can’t dance the way you used to. How do we build dancing back? Maybe it’s listening to music, watching videos, moving your arms. It’s what can I do to tap into those things that used to bring me joy.”

Nancy, 79, who lives in Salisbury, Maryland, was referred last year by her primary care physician to the PEARLS program at the MAC Inc. Area Agency on Aging. Nancy, a retired licensed clinical social worker who didn’t want her real name published, was understandably depressed after her son committed suicide. She talked by phone with Lachenmayr over a number of months, with Lachenmayr providing support and taking cues from Nancy about what to cover in their conversations.

Lachenmayr said she and other PEARLS coaches guide participants through strategies for engaging in pleasurable activities, such as going for walks or taking bubble baths, and talk them through how they can make those changes in their life.

“Maybe they think they only accomplished two or three things,” said Lachenmayr. “That’s OK. It’s not about forcing someone to do something. It’s really building the individual’s understanding that it’s within their power to change or begin to change.”

When Lachenmayr suggested that Nancy try to find activities that would give her pleasure, Nancy was resistant, and Lachenmayr accepted that. One thing that made Nancy feel better during the sessions was laughing. “Pretty much every session we could figure out something to laugh about,” Lachenmayr said. “Nancy has this great laugh. For me, it was a joy to work with her.”

Nancy feels she benefited from participating in PEARLS. “I’m functioning, I’m doing OK,” Nancy said. “I think the program has helped me quite a bit. I like the fact that I didn’t feel they were imposing on my time or private thoughts or anything.”

Implementation

In Maryland, Lachenmayr said her organization, in conjunction with Steinman’s group at U-W, conducts two, two-day trainings for coaches each year, with most done remotely by video. Most training participants are social workers, case managers, community health workers and other front-line providers from AAAs, senior centers, low-income senior housing, cultural and faith-based organizations, and other community-based organizations. Staff from health care, mental health agencies, and public health departments also have received PEARLS training. The AAAs receive federal funding through the Older Americans Act as well as state and local funding, enabling them to offer PEARLS and other programs.

Steinman said AAAs and other community-based organizations are better able to find staff to serve as PEARLS coaches because there’s no need for specialty credentials. “You can train people with lots of community wisdom and zero mental health literacy to do this well,” Steinman said.

Every PEARLS program must provide licensed oversight for the coaches. Lachenmayr’s program works with a gerontologist at Johns Hopkins Medicine who holds regular meetings with the coaches to discuss their cases. The coaches have to screen for dementia and substance use disorder, and refer those clients to more appropriate programs. And they watch closely for indications of suicide risk, in which case they make immediate referrals.

Maryland is unique among states in that under the state’s Total Cost of Care model, primary care providers are required to connect their patients with resources to address health-related social needs. As a result, PEARLS providers are able to bill the primary care practices for coaching.

The El Sol Neighborhood Education Center in San Bernadino, California, operated a PEARLS program from 2015 through 2022 through a one-time foundation grant, serving mainly low-income Hispanic older adults.

El Sol initially planned to partner with community health centers in a clinic-based version of PEARLS, said Alex Fajardo, El Sol’s executive director. But lack of referrals and cooperation led the nonprofit organization to launch its own home-based delivery model, Fajardo said.

El Sol’s CHWs received training through U-W. They provided PEARLS coaching in a home-based setting to clients who came to the program through word-of-mouth. The coaches also helped clients with their social and economic needs, including food donations, health care advocacy, and applications for public financial assistance.

After gaining the clients’ trust, the coaches had considerable success. For example, one client with a PHQ-9 score of 25, on a 27-point scale, who suffered deforming arthritis in both hands, started out crying and talking about the pain she had endured in her past, according to an El Sol progress report. Through coaching over several months, she began an exercise routine that helped her sleep better, and she started going regularly to the senior center and to church. The coach also helped her make healthier food choices. She began going to the community food pantry and picking up donated food items to distribute to other seniors in her apartment complex. Her PHQ-9 score dropped from 25 to 3.

One method El Sol’s PEARLS coaches used was to help clients put together a written or video record of their life story, and present the story in a celebration to which family members were invited. “The clinicians would ask, ‘Why spend two hours doing this book or video,’” Fajardo said. “To them, that’s losing time. But it’s about giving people meaningful things to celebrate from their life. That helped with the person’s depression.” 

For 152 clients enrolled in El Sol’s PEARLS program between August 2017 and July 2020, 98% experienced a 50% or greater improvement in their PHQ-9 score, a study published in Frontiers in Public Health in 2023 found. The average score reduction was 13.7.

While El Sol has no immediate plans to restart the program, Fajardo said he would like to get Medicaid funding for a similar program.

Impact

Steinman said that nearly 13,000 older adults have participated in PEARLS since the program launched in the early 2000s.

Several studies have found that PEARLS has significantly reduced depression among participants, cut utilization of health care services, and increased social connectedness.

A randomized controlled trial published in JAMA in 2004 found that patients receiving the PEARLS intervention were more likely than a control group to have at least a 50% reduction in depressive symptoms, to achieve complete remission from depression, and to have greater health-related quality-of-life improvements in functional and emotional well-being at six and 12 months.

More recent studies have shown similar results. A 2023 study reported that one year after enrollment, PEARLS participants had fewer hospitalizations and nursing home visits and lower mortality than a matched comparison group of patients. Another study found that about 35% of PEARLS participants achieved remission of their depression based on PHQ-9 scores by the end of the program, and nearly half of the participants had a 50% or greater decrease in their PHQ-9 score. PEARLS participants also showed significant improvement on measures of social connectedness six months after enrollment.

Steinman said that given its proven effectiveness, federal and state policymakers, payers, and providers should fund community-based programs like PEARLS to make them more widely available. “We’d love it if we could reach more people, but there isn’t a great, sustainable funding mechanism out there for community-based mental health care,” she said.

Insights

• It’s not necessarily easy to identify older adults with depression to participate in PEARLS. “Older adults don’t want people to know they feel depressed or are socially isolated,” Lachenmayr said. “There is fear around mental health. It’s not easy for older adults to admit those types of issues, or that they don’t have enough money for food. There’s a certain pride people take in their ability to manage themselves.”
• Coaches must gain clients’ trust before talking about their depression. “Developing an honest, trusting relationship is the most important piece, because there is a lot of stigma surrounding mental health,” Fajardo said. “The doctors want you to do this and that for 30 minutes, but that’s not how you work with the community. Maybe the person doesn’t want to talk about depression that day. You develop a relationship.”
• Health-related social needs must be addressed at the same time as clients’ depression: “If someone is food-insecure or doesn’t have heat in their home, or otherwise lacks basic services, we connect them to someone to help them with those things,” Lachenmayr said.
• Program coordinators must make sure that coaches are sensitive and flexible in working with clients. “It’s a non-imposing structure, so people can take from it what they want,” Lachenmayr said. “If they make a plan to do ‘X’ and don’t do it, you move on. The principle is you are an individual who can manage your life.”
• Policy changes are needed to recognize the importance of community-based mental health services and to adequately fund them. “If you are going to improve health equity, you have to adequately fund services like these,” Steinman said. “I’ve been struck by the stories about participants who felt like prisoners in their own homes and were thinking about ending their lives. These are really tough situations that can be turned around when people build back things that give their life meaning, purpose and value.”

Acknowledgements

Thank you to Lesley Steinman, Sue Lachenmayr, Alex Fajardo, and Nancy for helping to inform this blog post.

*Author Harris Meyer is a freelance journalist who has been writing about health care policy and delivery since 1986.