Maria Zamora, Chief Executive Officer at Center for Elders’ Independence, a PACE program based in Oakland, CA, likes to share this story about a case her program handled:
A PACE participant had suffered a traumatic brain injury that suddenly transformed her from a vibrant, self-sufficient individual into one who could no longer do things for herself. Because the participant’s husband had to work, primary caregiver duties fell to the participant’s young adult daughter. As a result of her new responsibilities, the daughter had to drop out of college.
Fortunately, the family learned about PACE.
“The young woman was an amazing caregiver and hesitant about leaving her mother in the center at first,” Zamora recalls. “So, she attended with her mother for a while. Soon she started to see that her mother was doing well. There were positive changes in her affect and personality. Ultimately, the young woman gained enough confidence in us that she re-enrolled in college. She started to engage with her friends again, too. Thanks to the support provided by PACE, there was a positive transformation in both the mother and her caregiver daughter.”
Working in PACE programs, we are privileged to see this sort of transformation often, one that goes far beyond the participants themselves.
“A great thing about PACE is that it doesn’t just impact the individual. It’s impactful to the whole family, and to communities,” says Zamora.
Do we share that message often enough and widely enough? If someone looks up the definition of PACE on the Medicare website, they’ll find the program described as one “that helps people meet their health care needs in the community instead of going to a nursing home or other care facility.” While this is an apt description, there is far more that we are able to do for people through PACE, as Zamora’s story highlights. Are we doing enough to let them know?
Caregivers Are in Need
Many, many caregivers are struggling to take care of loved ones in need of assistance while managing their own busy lives. The “sandwich generation,” caught in the middle between children and parents simultaneously needing care, is one famously stressed population. But there are others: the young adult forced to drop out of school due to caregiver responsibilities is one example. Others include individuals of all ages neglecting their own mental and physical health due to the demands of caring for others.
While caregivers consider what PACE could do for their loved ones, they should also be considering what PACE could do for them personally. Similarly, those of us who promote and advocate for PACE programs must do more to highlight the many benefits for caregivers. The fact is, that while PACE was created to provide all-inclusive care for the elderly, fulfilling that mission has a tremendous positive impact on others, particularly the family members and caregivers associated with the PACE program participant.
Potential negative impacts of caregiving may include stress, depression, difficulty in maintaining a healthy lifestyle, and pressure to stay up to date on recommended clinical services. When caregivers suffer—in these ways or others—their loved ones are likely to be negatively impacted as well, to say nothing of any other members of the family. That’s why it’s very important for caregivers to stay physically and mentally healthy. The caregiver is, after all, the anchor of patient care.
“There is a lot of unmet need out there,” says Ross Colt, MD, MBA, FAAFP, Medical Director at Gary and Mary West PACE in San Diego. “People must be made aware that there are competent, compassionate professionals available to help via PACE.”
PACE Benefits for Caregivers
Services and opportunities PACE programs can provide for caregivers include caregiving training, support groups, and respite services for caregivers in need of a break or even a vacation. Undoubtedly, your program has unique features that merit mention also. The implications of such offerings are greater than one might guess. They include allowing caregivers to reclaim their health and their personal lives.
Caregivers are often surprised and pleased to learn all that a PACE organization might do for them. Transportation for the participant to activities and medical appointments is just one offering that has many fans. Simple and straightforward, it’s a service that can be lifechanging for caregivers. Samira Beckwith, President and CEO at Hope Healthcare in Fort Myers, Florida, shares the story of one delighted family she had the opportunity to help:
“A daughter called and said, ‘I don’t want my mom to be in a nursing home.’ I was glad to be able to offer PACE as an opportunity for her to continue to work and have her mom cared for. We shared that we could have her mom picked up, take her to the center, allow her to socialize, have her see a nurse practitioner, see a doctor, receive the right medication if she’s not feeling well, and be taken to other appointments, too. And the daughter was just amazed that we could do all that and she could continue to work. The mom has been in PACE for three years now, and everyone is happy.”
While this story describes how PACE met the needs of one family, it’s important to always be clear that PACE treats each participant and every family as unique. Some may require more services, some less. Some caregivers may need more or different assistance than others, but in all cases, caregivers get the help and/or respite they need while their loved ones are engaged in activities that benefit them as well.
Promoting PACE to Caregivers
People should be made aware of the enthusiastic response that PACE receives from participants, caregivers, and families. The National PACE Association (NPA) collects a wealth of data on the impact of PACE and those data are impressive: For example, we know that more than 96 percent of family members are satisfied with the support they receive through PACE, and 97.5 percent of family caregivers would recommend PACE to someone in a similar situation. Also, while nearly half of family members reported a high caregiver burden at the time their loved one enrolled in PACE, more than 58 percent said they experienced less burden after enrollment. Maybe your program has results of its own worth sharing. Undoubtedly there are many stories like those shared by Zamora and Beckwith that would help to drive home the benefits of PACE for caregivers and families. What can PACE staff do to better spread the good news? Those who have contact with prospective participants, family members, caregivers or any member of the public might be reminded to make a point of mentioning caregiver-focused services and benefits in their communications. While the benefits can seem obvious to those of us immersed in the PACE program day in and day out, remember that they are not necessarily clear or top-of-mind for others. So don’t hesitate to share what you’ve seen and know. There are people who could greatly benefit.
A “Secret” No More
I’ve heard it said more than once: PACE could be described as a best-kept secret. That’s not what we want to be by any stretch of the imagination. Let’s work together to share the “secret” to the best of our abilities at every turn, spreading the news about PACE to all of the people, both participants and caregivers, who could benefit.
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