Oh, and also yourself.

Care — whether that’s giving or receiving — bookends all our lives. Yet for some reason, the bulk of the focus is either squarely on the front end of that journey, when children enter the picture, or the back end, when parents and other relatives begin to age.

But what about the middle and the transition from one phase to another? For us to thrive as a society, I believe we need to start thinking about care, not as something that happens at the start or end of life, but something that is continuous — something that enhances life and doesn’t diminish it.

Currently, we’re not set up for this reality. But by radically rethinking the care economy, we can be. To flip the script and reframe how we offer care in this country, there are three conversations we need to have. Let’s take a look at each.

1. What does care look like at every stage in my live and my loved ones’ lives?

It doesn’t matter what season of life a person is in, we can all benefit from having a safety net of care. That peace of mind that comes from knowing measures are in place to protect you. But safety nets require preparation, and herein lies the rub.

By default, babies come with time built in to anticipate and plan their caretaking, usually with the help of others, whether that includes a partner, coworkers, friends or family. For the other side of life’s bell curve, it’s a bit more challenging. One minute your parents are spry, hiking Machu Picchu, and the next, they’ve fallen and broken a hip. Things can change at any moment. And they do — without nine months of preparation to “senior proof” your loved one’s home so they can continue to live independently.

How do we prepare for those unexpected situations? Communication. Instead of waiting for a parent to become vulnerable, we can talk with one another about caretaking for all the stages that comprise our lives. Perhaps it’s when they have their first grandchild. Do they want to live closer? With consistent planning and regular check-ins about what lies ahead (both the potential and inevitable), we replace fear with transparency. And in doing so, we can prepare for these events and provide our loved ones with a safety net instead of a rude awakening.

2. How does care help me live my best life?

Not to answer a question with a question, but what if, instead of viewing care through a lens of crisis and catastrophe, we viewed it as self-care? To some, this may seem like a stretch beyond radical, but hear me out.

When we shift our viewpoint of caring for others and receiving care as an opportunity for independence and freedom, the act becomes empowering, enriching, and a sign of agency, confidence and strength.

The process starts by completing three relatively straightforward steps:

• Acknowledge you need help.

• Ask for help.

• Accept the help.

Although simple, executing on those three steps can be difficult. They each require some degree of vulnerability. And who likes that feeling? This is especially true of the caregivers who belong to the sandwich generation, those people (primarily women) in their 40s and 50s situated between the young and old and responsible for caretaking both.

For women, it’s easy to assume the role of caregiver — for everyone. At peril to ourselves, we fall into the stereotype of feeling like we have to be invulnerable and completely self-reliant. When you consider that mothers in the sandwich generation feel more stress than any other age group, it becomes clear that functioning as a village unto ourselves is unsustainable.

It’s only when we become able to model for others that it’s OK to ask for and receive assistance that we can get off the island of one and instead provide safety and assistance to one another.

3. Who is in my care village, and how do we lean on each other?

Growing up, my care village consisted of three generations, with no fewer than seven kids running amok at any time. If my parents were working, then there always was an aunt, uncle or grandparent to help — and there was no shame in asking. If one person needed a break, someone else stepped in — caregiving was a shared responsibility, and the idea of a care village embodies the principle that everyone, regardless of age, deserves a supportive community around them. That’s not a common model anymore, especially in a Western culture dominated by the nuclear family. And although everyone’s care village is different, it doesn’t mean we all still don’t need one.

When you consider the concept of a village, it’s important to think beyond only family. Not everyone has family in the traditional sense and oftentimes, they can be fraught. A village, on the other hand, is accessible and available to all — it just may be your next-door neighbor, your former spouse, or the people you play cards with each month.

With a village, it doesn’t matter who “resides” there; the important thing is to have that connectedness of care. And just as its members don’t have to live under one roof or even next door, a village also might not even be a person, it also could be technology.

With advancements in AI and machine learning, technology that can connect caretakers to people both on and offline, and a proactive internet of things that allows caregivers and care receivers to get ahead of a future incident, our villages become exponentially vast.

This affords peace of mind. Because I worry — and not just about the older members of my family. I think of my daughter at college and her personal safety and security, my friend out on a Tinder date, and my real-estate agent relative, who makes a living showing houses to strangers.

It’s not likely that they’ll take a nasty spill or encounter anything untowardly, but if there’s a way to help them feel more cared for and safe, then I’m here for that. I’ll know my care village is a vibrant and dependable one. And this puts us all one step closer to leading a life with dignity, independence and the joy of possibility.

Chia-Lin Simmons is the CEO at LogicMark and a tech veteran with more than 25 years of industry experience. She previously worked at Google, Audible and additional companies before joining LogicMark in 2021. LogicMark provides personal emergency response systems, health communications devices, personal safety apps, services and technologies to create a connected care platform.

The opinions expressed in each McKnight’s Senior Living marketplace column are those of the author and are not necessarily those of McKnight’s Senior Living.

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Whether they move to a senior living community or nursing home or live at home in the community at large, older adults living with dementia often need friends and family members to become more literate about their care plans and health regimens.

University researchers are testing a new digital tool that has been designed to help any caregivers of people living with dementia. The online tool works to help navigate the complex maze of regulatory and legal considerations that come with memory care.

Although the tool is aimed primarily at individuals’ family members, long-term care providers also figure to benefit via improved comprehension that winds up enabling better communication among all involved caregivers.

To study the tool’s efficacy, the National Institute on Aging has bestowed a $3.5 million grant on Emory University’s Neil Hodgson Woodruff School of Nursing, the recipients announced in December. 

“Promoting effective coping behaviors by strengthening caregivers’ capacities for navigating interactions with systems and structures may reduce high levels of caregiver stress,” Emory nursing professor Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, said in a statement. “We hope that ensuring that these systems and structures are effectively accessed and deployed will benefit persons with dementia as well.”

The study is expected to take place over five years and will involve interactive learning methods for caregivers. There are as many as 11 million informal caregivers for people living with dementia who could benefit from such tools, noted Clevenger, who also founded Emory’s Integrated Memory Care Clinic. 

Although Emory’s upcoming training program is designed to test training methods for the general public, other nursing schools are trying out innovations with their students directly. Some nursing students now are using virtual reality headsets to simulate real-life caregiving situations, the McKnight’s Tech Daily recently reported. 

The 2023 Workplace Wellness Survey questioned paid caregivers workers about their opinions about their employer, workplace benefits and challenges of balancing work, home life and finances, and their caregiving responsibilities.

The report noted that caregivers predominantly are women and minorities. They tend to be older, single workers as well, compared with the workforce at large.

“Caregivers are more likely to work part time than non-caregivers — perhaps owing to their caregiving responsibilities — although the two groups have similar household incomes and asset levels,” the research indicated.

Debt doesn’t appear to be a major concern for caregivers compared with noncaregivers. According to the data, caregivers are just more likely to note that debt is a problem for their households.

“However, caregivers were actually less likely than non-caregivers to flag certain types of debt, such as student loan debt or payday loan debt, as problematic for their household,” the authors said.

Still, according to the data, caregivers are more likely to find themselves in a pickle when emergency expenses, such as a costly prescription or a medical expense exceeding $5,000, arise. The authors noted that even with the given data, it is important not to use a broad brush to define all caregivers.

“Lower-income caregivers are, for instance, less likely to have access to and participate in core employee benefits, less likely to be satisfied with their employee benefits package, and more likely to report lower self-rated physical, mental and financial well-being,” according to EBRI.

Prachi P. Chavan, PhD, from the University at Buffalo-SUNY in New York, and colleagues examined the association of caregiving with mortality in a cohort of 158,987 postmenopausal women aged 50 to 79 years at enrollment into the Women’s Health Initiative. Mortality was ascertained through March 2019.

Overall, 40.7 percent of the women self-identified as caregivers at baseline (1993 to 1998). The researchers found that during a mean follow-up of 17.5 years, caregivers had significantly lower all-cause mortality than noncaregivers (multivariable-adjusted hazard ratio, 0.91). No difference was seen in the inverse association between caregiving and all-cause mortality according to caregiving frequency or when stratified by age, race-ethnicity, depressive symptoms, optimism or living status. There was an inverse association observed for caregiving with cardiovascular disease and cancer mortality.

“This study adds to the limited existing literature on mortality outcomes in female caregivers and supports the concept that informal caregiving may be associated with longevity,” the authors write.

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Imagine having a nurse or doctor that only “you” can see — one who is invisible to everyone else and who leaves no trace in the physical world. 

For older adults, or their caregivers, that might sound like another terrifying sign of cognitive decline, but in the near future, such nonphysical entities actually may be a valuable part of the senior living and care ecosystem.

Healthcare providers are just beginning to grapple with the concept of robot nurses, but even less has been written about the tech’s related cousin, “virtual humans.”

A holographic or non-physical nurse, or even companion, however, someday soon could provide a cost-effective and easily deployable solution to combat loneliness in older adults, one report notes.

A “virtual” nurse, as opposed to a robot, could “exist” and interact with older adults via virtual or augmented reality. The ability for such an avatar to “move” around the physical world would separate such technologies from a mere digital assistant confined to a computer or tablet screen.

In the future, such “virtual” entities could be designed to look like a family member, or they could “lie down” with a resident as if hanging out in the same common area, one author speculates.

Although the concept of such VR assistants, at least within senior living and care, mostly is speculative at this time, use of VR overall is not. 

Many senior living operators already have VR headsets and tools for residents to use. Largely, VR in senior living is used for entertainment purposes, such as virtual “world tours,” but increasingly, developers are finding other uses of the technology, including as clinical therapy tools or even for training caregivers.

The combination of digital tools that can create virtual or augmented reality is overall being referred to as “extended reality,” and at least one study showed a majority of healthcare professionals support such tech being deployed, particularly for training, the McKnight’s Tech Daily reported last month.

A multi-year collaboration aims to strengthen the relationship between direct care workers and family caregivers by drawing attention to policy barriers, research needs and workforce initiatives.

PHI and the National Alliance for Caregiving unveiled the Direct Care Worker and Family Caregiver Initiative on Thursday. Its aim is to elevate the relationship between professional and family caregivers to create a more sustainable long-term care system. 

Those two caregiver groups typically are not formally integrated into care teams, often resulting in miscommunication, missed collaboration opportunities and poor care outcomes, the collaborators said, adding that lack of communication between the two groups also can lead to differing perspectives and expectations.

The initiative is the byproduct of a national advisory group of experts, including researchers, policymakers and practitioners, convened by the two partners.

Funded by the John A. Hartford Foundation, the initiative will focus on key policy areas that include integrating direct care workers and family caregivers into interdisciplinary care teams, expanding access to consumer direction programs to compensate daily caregivers, strengthening matching service registries to connect families with paid caregivers, and investing in new research on the dynamics between direct care workers and family caregivers to develop targeted interventions and policies.

The direct care workforce is expected to add 1 million new jobs from 2021 to 2031, more than any other single occupation in the nation, according to PHI. That figure jumps to 9.3 million total job openings in direct care when accounting for jobs that must be filled when existing workers transfer to other occupations or exit the workforce. This job growth will occur primarily in the home- and community-based services sector, with the home care and residential care workforces.

“Together, direct care workers and family caregivers form the backbone of our long-term care system, providing essential support to millions of older adults and people with disabilities,” PHI President and CEO Jodi M. Sturgeon said in a statement. “Their critical connection frequently goes unrecognized, which hinders the full potential of this partnership in providing high-quality, person-centered care.”

Those challenges complicate the caregiving landscape and can amplify the emotional, physical and financial strain of caregivers on both sides, leading to burnout and high turnover rates among direct care workers, as well as diminished health and well-being for both groups, according to National Alliance for Caregiving President and CEO Jason Resendez. 

The initiative follows last fall’s release of the 2022 National Strategy to Support Family Caregivers — the first national strategy to support family caregivers, as well as address professional caregiver education, training and compensation — by the US Department of Health and Human Services, through its Administration for Community Living. The strategy also called for establishing a pipeline of long-term care workers and reforming the LTSS system.

The website evaluated the future hourly earnings of 16 professions using the annual mean hourly earnings for each job from 2013 to 2022 from the Bureau of Labor Statistics. Using these historical data, the site forecast what people in each job would make every year from 2023 until 2033 using an Excel function.

Among the healthcare professions that were examined for potential wage changes over the next decade — such as RN, physician and dentist — when adjusted for the estimated inflation rate, RN was the only one expected to see growth by $12.82 per hour. Dentists’ wages, by comparison, are projected to decline by $13.72 by 2033.

According to the Bureau of Labor Statistics, registered nursing is among the fastest-growing professions in the country, and skilled nursing facilities soon may have a pressing need for such professionals, given the minimum staffing mandate proposed in September by the Centers for Medicare & Medicaid Services. It calls for US nursing homes to ensure that each resident receives a minimum of 0.55 hours of registered nurse care and 2.45 hours of nurse aide care each day, although it is unclear when the rule could go into effect.

“To meet both the nurse aide and RN hours per resident day criteria and the RN 24/7 coverage, facilities will need to hire an additional 80,077 nurse aides and 22,077 RNs for a total of 102,154 [full-time equivalents],” according to an analysis by consulting firm CliftonLarsonAllen shared by the American Health Care Association. “If CMS only requires the RN 0.55 HPRD requirement, with no 24/7 RN coverage, a total of 19,880 RN’s would be needed.”

A research collaboration between a senior living provider and a higher education institution is growing into a national model for teaching coping skills to family caregivers.

After receiving widespread attention for demonstrating positive outcomes in Charlotte and other parts of North Carolina, the Caregiver Thrive, Learn, Connect program is expanding across the country. 

It began when Dolores Gallagher-Thompson, PhD, Stanford University School of Medicine research professor emerita, developed an in-person Coping with Caregiving program for individual and small groups of family caregivers 20 years ago. Julian Montoro-Rodriguez, PhD, University of North Carolina at Charlotte professor of sociology and gerontology, then adapted the program for Zoom during the COVID-19 pandemic, launching the free Caregiver TLC educational workshop in response to the needs of family caregivers.

Southminster, a Charlotte-based continuing care retirement / life plan community, invested in the program to enable it to be offered free to family caregivers across Charlotte and North Carolina. As part of the team that helped recruit facilitators and educate the community about the program, Southminster promoted the research to help make the program sustainable long term.

The research

The research phase of the program, spearheaded by UNC Charlotte and supported by funding from Southminster, began in the Charlotte area in spring 2021, with findings released this past summer in the journal Clinical Gerontologist. 

The research involved free online workshops and support to adults providing care to people living with memory loss, dementia or chronic illness. Trained facilitators led caregivers through six weekly sessions designed to teach coping skills to deal with stress, depression and burden, as well as strategies to improve quality of life.

“It’s an active learning process, not a support group,” Gallagher-Thompson told McKnight’s Senior Living. 

Data showed that caregivers experienced a significant reduction in depression and stress, and improved their view of their role as caregivers. It also confirmed that the program can be delivered effectively via technology.

“‘There was a positive effect, no matter whether those being cared for suffered from memory loss, dementia or chronic illness,” Montoro-Rodriguez said in a statement. “In addition, even though some people believe it makes sense to develop different programs for ethnic groups and minorities, this research program indicates that the same approach serves various ethnicities equally.”

Community partners

Working with community partners to embed the program into a range of services made the program sustainable. Sheryl Gerrard, Jewish Family Services senior engagement manager, called it a “ripple effect.“

“We have our own base of caregivers, and we work with many, many family members, so we can reach a whole different audience that might not have been connected through the university or Southminster,” Gerrard said in a statement. “The program’s themes — such as stress coping and anger management — are so universal across the caregiving experience.”

Gallagher-Thompson said that the partners increased knowledge and awareness of the service as trusted members of the community.

Tracy McGinnis, Southminster vice president of philanthropy and strategic initiatives, said that the Caregiver TLC program is an example of how innovative partnerships can accelerate work in developing evidence-based programs of excellence that contribute to aging research while improving caregiver outcomes.

McGinnis told McKnight’s Senior Living that Southminster believes in collaborating to more quickly bring programs to communities outside the walls of the organizations.

“Collaborating gives us the ability to share resources, avoid duplication of efforts and enhance our outreach and community engagement by creating sustainable programs,” McGinnis said, adding that one of Southminster’s philanthropic goals focuses on community education. 

Supporting social issues, she added, will make the community more attractive to the skilled workforce, and participating in philanthropic work with a community focus can help build a reputation as a trusted community partner. Caregivers also become aware of Southminster as an aging services resource, which could translate into prospective residents down the line.

Moving forward

Recognizing the diversity of caregivers across the nation, the Caregiver TLC program now is taking the next step and is being translated and culturally adapted for Latinos and Spanish speakers by UNC Charlotte.

Southminster is forming an advisory board to continue to work with other nonprofits in the area so they can embed the program in their service offerings, making the program sustainable, McGinnis said. The community also is starting to share its experience and the research with other CCRCs in the state and throughout the country.

“Caregiving is not a sprint; it’s a marathon, and marathon runners have to learn when and how to expend their energy so they make it to the finish line,” Gallagher said. “This program helps caregivers develop that mindset and strengthens their skill sets to continue in this challenging journey.”