While the field has garnered much research and debate, especially in the face of budget cuts to Medicare, Medicaid and Social Security, caregiving is largely under-resourced and under-funded, national industry experts say.
During a panel at the American Society on Aging’s annual conference titled Aging in America in mid-March at the Hyatt Regency Hotel in downtown Chicago, four company executives informed participants that government and the industry have a long way to go toward providing caregivers with the support they need to enable the elderly to age in place.
Gail Sheehy, author of the book Passages in Caregiving and journalist, said an ecosystem of caregiving has evolved over the decades as a result of a multidisciplinary, multi-industry effort to attend to the needs of families providing care to their loved ones at home.
Citing the latest statistics about family caregivers, Sheehy said 50 percent of caregivers work full-time with the age of such providers averaging 18 years in a $220 billion market. The cost to families is $20,000 a month, she added.
Sheehy explained that this breaks down into $25 an hour for a caregiver and giving an aide $12 an hour. Often, payment means paying for an eight-hour work day when all a caregiver needs is two hours’ worth of senior care.
She cited one study that served as a great knowledge base for industry leaders in which senior patients were observed for five years to learn about the challenges of caregiving facing their families. Researchers found that one-third of families lost income in carrying out their caregiving duties and maintaining full-time jobs. An average of $5,000 followed out-of-pocket care costs for sick seniors.
In the study, caregivers averaged in age in their late 40s to 50s. They can’t work and are getting ill. “That is an enormous cost to our culture,” Sheehy said. Caregivers contributed $450 in lost wages, which is paid into the economy from commercial largesse.
“It is fair to call it an ecosystem of caregiving,” she said. “It is very difficult to find resources to this category of health care.” As the Baby Boomers age and the ecosystem of caregiving expands, all technology will be adapted toward serving them, Sheehy added.
Sherwin Sheik, founder and CEO of CareLinx, an online clearinghouse for linking families to home healthcare professionals, says he is seeking to ease families’ search for competent care for seniors.
“We’re empowering families to easily find caregivers,” Sheik said, exhibiting at a booth in the Hyatt Regency Hotel on Wacker Drive and after presenting on a panel about caregiving. “We saw what they go through when they cannot get help from agencies.
“[There must be] a middle ground between [the high costs of providing home care] of $20,000 a month to $807,000 total. [And these figures don’t represent] the net for a year and there is no guarantee of safety.] They are exposed to risk,” he added.
“Families come to our site,” Sheik said. “They punch in a zipcode, plug in information and do a search. We help families [find caregivers in their local areas]. We save them $10,000 a year in costs.”
“It helps families not go to job boards,” he said. “They hire directly. For example, families go to the site and may need to find females experienced with dementia who can work Mondays through Fridays from noon to 8 p.m. And a person might need to speak Cantonese.”
“The problem is so large when you look at home care agencies,” he said. “We have agency-affiliated caregivers. Agencies need to recruit the staff. They can go through our staff. All the candidates are there [on the website].”
Sheik is able to connect federal Medicare and Medicaid policy with his work. “We saw CMS (The Centers for Medicare and Medicaid) cut funding and resources for skilled nursing [facilities],” he said. “[This means] more skilled nursing services will be offered and provided in the home. It will affect readmissions to the hospitals.
“Private caregivers will be expected to provide more hours of care for the same dollar. Reimbursements will be cut. The government will not save the day.”
“They [the private sector] want to do it but are not comfortable to do it,” he said. “It will be angels and strategic money [that will ultimately meet the demand for senior long-term care and home health care.] They will invest after they’ve seen a homerun.”
Meanwhile, Sheik said he plans to further develop his online network slowly without overextending capital and resources.
“I’m consciously doing a slow rollout,” he said. “I could not scale if I put out a big check. We know we can manage needs but it will happen slowly.”
Jeff Shoemate, vice president of innovation and business development of United Healthcare Group, said,of the 75 million customers his company serves worldwide with 6,000 hospitals, 247,000 healthcare professionals nationally and 20 years of clinical data for nearly 100 million insured individuals, nine million are senior citizens. He explained that his company is working to more fully serve caregivers and their elderly relatives.
“It’s healthcare-centric,” he said. “It is all about healthcare. Everyone goes through different states [of health]. You are in a steady state. You are normal and steady, managing health events, eventually dealing with caretaking. UHG is particularly relevant in direct health transitions when caregiving needs peak. In each of these transitions, caregiving becomes important. As caregivers get drawn in, we can help. It is as underserved as any other facet of health care.”
Shoemate said families are spending “real money,” $5,000 a year to be exact on senior long-term care. If an individual or a couple are making $50,000 a year, he said that this figure does not translate into money “well-spent.” He explained that senior long-term care is still in the process of being fully developed and fine-tuned as an industry to deal with the high cost of care and other issues.
“It’s hard to find all of these solutions,” he said. “We are in the middle of it. We have employees – calling into our lines [to ask questions or raise issues about] Medicare. [Much of the different industrial components of senior long-term care] are not organized. We have a big space. It needs to be scaled. We’ve talked to industry experts. We are aggregators. We provide not only advice but the right assortment of level of quality health care and customer service. We are in the midst of it now.”
Hal Chapel, co-founder and CEO of Lotsa Helping Hands, an online network based in Wellesley Hills, Massachusetts of volunteer caregivers, said this service empowers caregivers dealing with physical or emotional exhaustion and emergencies.
“We bring together caregiver communities,” Chapel said. “Caregivers tap into this initiative. We have the honor of benefitting them every day. The great thing is people in the community are volunteers. They are religious leaders, etc. They ask, ‘What can I do to help?’
“[Caregiving needs] are unpredictable. Managing help is a full-time job. It can create a new caregiving community within 60 seconds. Other communities have resources or features include message boards, research, photo galleries, well wishes and lists, “ he added.
He said Lotsa Helping Hands was started as a form of caregiving ecosystem, an industry term used to which would include “consumers, customers, nonprofits, resellers, products, services and suppliers.”
“Each business affects and is affected by the others,” Chapel said. “Each must be adaptable and flexible to survive. There must be relationships not only with one organization and other members of the ecosystem but they have their own relationships.”
He added that he is pleased that investors are stepping up to the plate to finance such caregiving endeavors.
“They are putting venture capital into this ecosystem space,” he said. “People are talking about it now. They are huge in Chicago, Maryland, Kentucky and Ohio.”
Shoemate said strong leadership is crucial to taking on the daunting task of financing and developing of senior long-term care nationally, most especially its infrastructure.
“Leaders become extremely important,” he said. “They may change overtime. Apple, [at one time], was the leader [in the information technology industry]. Microsoft took over. Google was a leader. Microsoft took over. United Healthcare Group wants to set the tone and set the pace for [the growth of senior care and caregiving] so that we are not flailing about, guessing what [the industry] should look like.”
Businesses are responsible for most idea creation in the nation, Shoemate explained, and their ideas will drive part of the innovation in senior long-term care and caregiving.
“The small startups create most jobs,” he said. “There must be a link between creators and businesses. Less than 50 percent of startups stay up. Creators are thought of as universities [in that they are responsible for research and development]. They must be a link between businesses and creators.”
To stay viable, Shoemate added, new and small businesses specializing in senior care must attract and retain large commercial customers and investors.
“New enterprises need large company customers,” he said. “Venture funds improve products. Large companies get faster time to [bring their companies] to market. They do experiments with [products or services] with lower risk.”
Shoemate added that industry leaders are converging in different regions of the country to discuss, plan and carry out the expansion of senior care.
“Leaders are coming together to cooperate and collaborate regionally,” he said. “Connecticut, New Jersey and New York all have good models of family care coalitions. [In their coalitions], there are hundreds of members of nonprofits in the tri-state area and they get information [about senior care and caregiving] in one place.
“Caregivers are getting certification. They are giving back to their community and making money. Someday, Boomers will become seniors themselves.”
Still, industry leaders are put off by the frustrations and barriers of growing senior care, Shoemate added.
“We have a huge opportunity,” he said. “We are frustrated that it took [so long] for the hockey drill to get to the hockey stations. We discern different signals for the noise for both consumers and businesses. Larger companies are slow to show full commitment [to the growth of senior care and caregiving].
The sheer abundance of choices causes delays in the development of the industry, Shoemate said.
“The industry is in its adolescence,” he said. “It has had a successful childhood and wide acceptance of a nod to pay attention to caregivers. But which solution [should we adopt]? There is so much out there. How do we figure it out?”
This article was originally published September 2013 on the website of PharmPsych.com, one of seven websites that comprise The Pharm Psych Network, a medical communications and education company.