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AARP Report: Unpaid Caregiving Valued at $ 600 Billion

Published in RINewsToday on March 13, 2023

Family caregivers put in over $36 Billion hours in unpaid care taking care of loved ones, a responsibility that takes a heavy toll on them financially, physically, emotionally, and mentally.

But now, a new AARP report reveals that the family caregiver unpaid work is estimated to be valued at more than $600 Billion. This is a $130 Billion increase in unpaid contributions from family caregivers since the last report in the series was released in 2019. The economic impact of $600 Billion is more than all out-of-pocket spending on health care in the U.S. in 2021, notes the AARP report.

The 32-page 2023 update, Valuing the Invaluable, highlights trends in family caregiving, explores the growing scope and complexity of family caregiving, and discusses actions needed to be taken to address the financial, social, and emotional challenges of caring for parents, spouses, and other loved ones. 

AARP continues to put the spotlight on this important aging policy issue as the graying of the nation’s population continues. According to the group, by 2034, adults aged 65 and older will outnumber children under the age of 18 for the first time ever.

The share of available family caregivers is projected to continue shrinking, relative to the number of older adults who will potentially require long-term care. In addition, family caregivers will continue to face the dual demands of employment and caregiving responsibilities, which often includes bringing up children while taking caring of older parents simultaneously.

“Family caregivers are the backbone of long-term care in this country,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, and a lead author of the report. In a March 8, 2023 statement announcing its release, Reinhard said, “The care they provide is invaluable to those receiving it. But this is not just a family issue: it impacts communities, employers, and our health and long-term care systems. We must treat family caregivers as the valuable resource that they are by providing them the support they need to care for loved ones while also caring for themselves.”

AARP, the nation’s largest aging advocacy group representing over 38 million members, says it plans to push this year to turn the National Strategy to Support Family Caregivers into action that provides meaningful, tangible outcomes and support for family caregivers. The National Strategy, delivered to Congress last September, stemmed from the RAISE Family Caregivers Act, which was championed by AARP. The National Strategy highlights nearly 350 actions that the federal government will take and more than 150 that can be adopted by stakeholders and other levels of government to give family caregivers the necessary help they need.

Taking a Closer Look at Home

AARP’s latest report in the Valuing the Invaluable series also provides us data for the Ocean State as to the value of unpaid caregiving provided here. The unpaid care provided by the 121,000 Rhode Island caregivers is valued at $2.1 Billion. This amount was calculated at an $18.95 hourly value to the estimated 113 million hours of unpaid care that family caregivers provided in 2021 – a $300 million increase in unpaid contributions since the last report was released in 2019.

“Family caregivers play a vital role in Rhode Island’s health care system, whether they care for someone at home, coordinate home health care, or help care for someone who lives in a nursing home,” said Catherine Taylor, AARP Rhode Island State Director. “We want to make sure all family caregivers have the financial, emotional and social support they need, because the care they provide is invaluable both to those receiving it and to their community,” she says.

At the Rhode Island State Capitol, AARP Rhode Island says it will continue its fight for assisting family caregivers and the loved ones they care for. During the 2021 Rhode Island General Assembly Session, AARP Rhode Island, along with other aging advocacy groups, successfully lobbied to enhance the Temporary Caregiver Insurance program by increasing the number of weeks a worker can take annually to care for a loved one from 4 to 6 weeks.

During the current legislation session, AARP Rhode Island calls for state lawmakers to support family caregivers who work because caring for a loved one shouldn’t mean losing pay—or even their job. House Bill 5781/Senate Bill 139 will increase the number of weeks that one can take annually to 12. These bills would also expand the definition of family in Rhode Island’s existing paid family leave law to include siblings, grandchildren and other care recipients to fit the reality of Rhode Island’s diverse and multigenerational families.

“Too often our unpaid caregivers are not acknowledged. We need to show the many thousands of unpaid caregivers in Rhode Island we value their contributions with sound policies, programs and laws that support them,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI.

Maigret also calls for expanding the state Temporary Caregiver Insurance law from six to twelve weeks as most states that have such programs allow, and for including siblings, grandchildren and care recipients – important steps in making Rhode Island a more family-friendly state. “I have personally been a caregiver for a number of family members and know how challenging it can be to navigate our long-term care system,” Maigret says.

“Another important step to support our caregivers is to provide state funding to strengthen The POINT, the state Aging and Disability Resource Center, so that caregivers have a single place they can go to get timely, reliable information and person-centered counseling about the services, supports and benefits available to them as caregivers,” says Maigret. “Too often caregivers are not aware of programs such as subsidized respite and adult day or benefits available to care recipients. That is why the Senior Agenda Coalition of RI is asking the legislature to add $.5 Million to the state budget as The POINT currently receives no state funds and relies entirely on insufficient federal dollars,” she adds.

“It is also important that caregivers be viewed as part of a person’s healthcare team. Healthcare providers, especially those in primary care, need to ask patients if they are getting care from a family member or if they themselves are a caregiver,” says Maigret, noting that this action will provide an opportunity for providers to offer information and guidance about available services and supports.

Resources for Caregivers

“We know that everyone’s path to aging is different and it’s our paid and unpaid caregivers that provide critical supports to our loved ones,” said Office of Healthy Aging Director Maria Cimini. “At the Office of Healthy Aging, we are committed to supporting our caregivers in a variety of ways encouraging self-care through respite programs, informational workshops, and our senior companion volunteer program,” says Cimini.  She suggests that family caregivers go to https://oha.ri.gov/resources/oha-resource-center to download OHA’s 2023 Pocket Manual, detailing resources available programs and services that the state agency provides to family caregivers.

Dementia and Alzheimer’s care

“Dementia caregiving is challenging emotionally, physically, and financially. The care that family members provide is priceless, really. We want people to know they are not alone and that the Alzheimer’s Association, Rhode Island chapter has both in person/virtual support groups and community based educational programs for people who are caring for a person living with a diagnosis of Alzheimer’s disease or a related dementia throughout the state,” says Donna McGowan, Executive Director, Alzheimer’s Association Rhode Island Chapter, noting that there are 24 thousand people living with Alzheimer’s in Rhode Island and 39,000 caregivers, many unpaid family members.

“The Alzheimer’s Association believes that understanding how the diagnosis will affect the entire family is truly important to know what resources the family may/will need and how to pay for care must be considered starting right from when a diagnosis is made,” says McGowan.

McGowan says that the Alzheimer’s Association’s  24/7 Helpline clinicians guide callers to financial assistance programs that may help pay for respite or a needed break. For details, go to https://www.alz.org/ri

Chris Gadbois, DNP, RN, PHNA-BC, PMH-BC, Chief Executive Officer of the East Providence-based CareLink, says AARP’s report highlights the critical need for support for caregivers in Rhode Island. “At CareLink, we see firsthand the impact on the health and well-being of caregivers and are working hard to provide programs to provide resources. Our Administration on Community Living grant funded program to support individuals with dementia and their care partners is just one example of services that can help people to remain safely in their homes,” she says. 

The program, delivered by a trained Occupational Therapist, during five ninety-minute home visits, includes techniques to reduce challenging behaviors, promote functioning, improve caregiver communication, home environment safety, and tips focused on caregiver self-care, including problem solving and teaching stress management techniques. For more details, go to https://carelinkri.org/member-services/therapeutic-services-for-dementia/.

AARP provides a comprehensive listing of resources and information on family caregiving.  Go to aarp.org/caregiving.

For a 2023 copy of Valuing the Invaluable, go to https://www.aarp.org/content/dam/aarp/ppi/2023/3/valuing-the-invaluable-2023-update.doi.10.26419-2Fppi.00082.006.pdf.

Resources and information on family caregiving are available at aarp.org/caregiving.

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Alzheimer’s Disease Initiative Program Grant Now Recruiting Rhode Island Participants

Published in RINewsToday on August 15, 2022

Last January, CareLink, a nonprofit network of post-acute and community-based providers, received a grant from the Administration for Community Living, a division of the U.S. Department of Health and Human Services. After the required planning period, and identifying community resources and referral organizations, and training staff, CareLink is now able to recruit program participants. Carelink, an East Providence-based healthcare organization, received funding for a three-year grant that offers innovative therapeutic services and programs. In addition, it connects participants with resources and provides caregiver education.  

CareLink’s services and programs will support older people with ADRD who live in the community alone or with a care partner, individuals with intellectual and developmental disabilities who are at greater risk for developing dementia, and persons living in ethnically and culturally diverse communities with limited access to medical care due to economic, language, or other barriers. 

The $904,133 Alzheimer’s Disease Program Initiative (ADPI) grant enables the nonprofit to better support the 24,000 Rhode Islanders with Alzheimer’s Disease and Related Disorders (ADRD). These services are even more critical as this number is projected to double by 2040. In addition to individuals with ADRDs, the grant targets services for individuals with intellectual and developmental disorders and those living at home alone with a diagnosis of cognitive impairment. 

Grant funds will be used to deliver two nationally recognized, non-pharmacological, evidence-based treatment programs – Cognitive Stimulation Therapy (CST) and Skills2Care®. These programs are provided to individuals living with ADRD, and when appropriate to their caregivers, at no cost. Specially trained CareLink occupational therapists and speech-language pathologists who have experience working with individuals with Dementia and their caregivers provide these interventions.   

Two Nationally Recognized Therapeutic Interventions to be Offered

CST addresses memory, thinking skills, and quality of life thru 14-biweekly sessions of structured 45-minute therapy sessions, featuring different topics.  Each session includes a warm-up activity, a song, and a “reality orientation board” that details the date, time, place, and weather.  Sessions include a variety of activities including the discussion of current news, listening and singing to music, playing word games, and participating in activities such as baking. This program can be provided using both individual and group sessions meant to foster social engagement and community. Both Speech-Language Pathologists and Occupational Therapists provide this beneficial program.

Skills2Care® provides training for the individual and their caregiver on managing challenging behaviors. This program, delivered by a trained Occupational Therapist, during five ninety-minute home visits, includes techniques to reduce challenging behaviors, promote functioning, improve caregiver communication, home environment safety, and tips focused on caregiver self-care, including problem solving and teaching stress management techniques. 

“Our focus is on providing innovative treatment for individuals with dementia and their caregivers,” explains Dr. Chris Gadbois, chief executive officer of CareLink, Inc. “We’re integrating interventions and supports for patients and caregivers within the home environment, building upon the recommendations of the individual’s medical professional and resources within the community.” 

“The strong relationships CareLink has with a wide array of community partners will enable this program to reach Rhode Islanders from different backgrounds across the state. We have been overwhelmed by the enthusiastic support of the community for this effort to improve the lives of patients and their caregivers,” says Gadbois. 

“The Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council congratulates CareLinkRI on securing this competitive funding for these important services,” said Council Chair Nancy Sutton, MS, RD.

“A diagnosis of Alzheimer’s or a related dementia is a devastating diagnosis for an individual, their family, and their loved ones. People need to talk to their healthcare provider about any concerns of memory loss, regardless of their age. We know that an early diagnosis allows patients and caregivers to connect with services and resources right away—before they experience a crisis.”

“Dementia care is complex and requires a full team to assist patients and their families navigate the healthcare system and community resources. This funding helps to support and expand a much-needed program where providers can refer patients and caregivers as soon as they receive a diagnosis.”

Christine Gadbois, representing CareLinkRI, is an active member of the Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council, and has informed the Council on this newly funded initiative. Other Council members include the Rhode Island Department of Health, Office of Healthy Aging, Butler Hospital, and Rhode Island Hospital’s memory clinics, and the Alzheimer’s Association – Rhode Island Chapter, and they are all collaborating with CareLinkRI to ensure easy access.

“Alzheimer’s disease and related dementias take such a toll on our communities, and support services like those provided through CareLink and its partners are essential for thousands of constituents and their families,” states Senator Louis DiPalma (D-District 12). “I’m extremely grateful for this award to CareLink which will make an enormous difference in the lives of Rhode Islanders in the years to come.” 

While CareLink is the grant recipient and manager, they have partnered with numerous local agencies, including The Cove Center, Avatar, Trudeau Center, Accesspoint RI, and Meals on Wheels. CareLink is also reaching out to local medical providers, including specialty clinics such as RI Mood and Memory. “We know it is critical to engage community partners to successfully reach a diverse group of individuals who will benefit from these services across the state,” says Robyn Earley, Chief Growth Officer of CareLink. 

“We know these programs are impactful and we are working to integrate these services into the larger landscape of resources for persons with dementia and related disorders, adds Earley. 

Looking for Participants

On May 26, 2022, Earley reports that CareLink began its recruitment efforts for study participants in the community through general outreach. “We are now working on outreach to Rhode Island medical providers, senior centers, intellectual and developmental disability service organizations, senior housing, and other community agencies that serve individuals with cognitive impairments. We are targeting individuals at home through outreach/partnership with MOW, Hope Health, etc.” she says, noting that a plan is in place to outreach to Resident Services Coordinators at senior high-rises to reach the live-alone population.

“The investment in these therapeutic tools has a significant impact on the quality of life and independence of those with dementia,” she says. These interventions enable individuals with cognitive impairments such as ADRD to live longer and more successfully in the community. 

Ultimately, CareLink intends to provide services to over 300 people by the end of grant, three years from now.  

“We have already learned so much from the first month of service and I anticipate continued growth and learning throughout,” says Earley.

For details about this study or for referrals, please contact CareLink at ADPLdementia@carelink.org.  Or call 401 490-7610, Ext. 116.  

To learn more about CareLink, go to www.carelinkri.org/

Herb Weiss, LRI’12, a Pawtucket writer covering aging, health care and medical issues. To purchase his books, Taking Charge: Collected Stories on Aging Boldly, and a sequel, go to herbweiss.com.

Gubernatorial Candidates Put Spotlight on Rhode Island’s Fragmented LTC Continuum

Published in Pawtucket Times on August 8, 2022

Last week, hundreds of seniors and aging advocates gathered at East Providence High School to learn more about aging policy positions from 6 Rhode Island Gubernatorial candidates. Many more watched virtually as the event was streamed online.

During the 143-minute forum, the invited Gubernatorial candidates (five Democratic and one Republican, gave two-minute responses to seven questions previously given to them and hammered out by the Senior Agenda Coalition of Rhode Island (SACRI) and its 17 cosponsors, that would elicit how each, if elected Governor, would fix Rhode Island’s fragmented long-term care continuum and provider payment systems.

According to Bernard J. Beaudreau, Executive Director of the Providence-based SACRI about 300 seniors and aging advocates came to personally see the Gubernatorial candidates outline their position on aging issues. Multiple platforms on Facebook and YouTube were promoted by a variety of senior advocacy groups that resulted in the over 300 virtual audience. Some held “watch parties” at one or more of the 12 senior centers, with approximately 135 people participating from throughout the state.

Before the forum began at 10:00 a.m., Deborah Burton, Executive Director of RI Elder Info, one of the forum’s sponsors, provided the welcome, explaining why it was so important for older voters to understand the aging agenda of the next Rhode Island Governor and their commitment to funnel funding and resources to the state’s aging program and services. “The policies of the incoming Governor will impact a large number of baby boomers in the state,” said Burton, noting that the Gen X’s, often forgotten, are right behind them. “We need to have a system [long-term care continuum] in place that is effective, that is funded, and is what we need and want as we age,” she said.

“It was very evident that these candidates came prepared and took the forum and all the issues impacting older Rhode Islanders very seriously,” said a very pleased Beaudreau.

Talking the Talk about Senior Issues

Here is a sampling of policy issues touched on by the candidates:

The attending candidates gave their thoughts as to how they would rebuild and sustain a viable workforce of nursing homes and homecare providers.

Two term Secretary of State Nellie Gorbea said she felt that we, as a society, do not value caregiving. She called for investing in the workforce of nursing home providers by increases tothe state’s Medicaid rates. The educational sector can become a pipeline to “nurture and grow” jobs for this sector, she said.

Governor Dan McKee stated he addressed staffing issues at home health agencies and nursing homes by expanding the Wavemaker Fellowships to include healthcare workers and increasing reimbursement rates for home health agencies by $ 900,000 annually. McKee also noted that in last year’s budget it gave the state’s nursing facilities a cost-of-living increase to ensure funding to increase their workforce.

Healthcare provider businesswoman Ashley Kalus, a Republican candidate, also called for increasing the Medicaid reimbursement rate. “Respect long-term care as a career choice which means there needs to be a path from home health care aide, to certified nursing assistant, licensed practical nursing, registered nurse and Nurse Practitioner through apprenticeship and training programs,” she said.

Former CVS Executive Helena Foulkes supports expanding Medicaid, but we must hold the nursing homes accountable to make sure that the increases of state funding go to workers and not to equity owners of nursing homes.

Healthcare advocate Dr. Luis Daniel Luis Muñoz says we should increase reimbursement rates for providers. He calls for the creation of a state-based medical school to create more dental professionals and physicians. “That is how we can increase the providers necessary to serve Rhode Islanders,’ he says.

Former Secretary of State Matt Brown blamed Rhode Island’s staffing shortage on the General Assembly slashing Medicaid reimbursement rates over the years. He called for an increase in Medicaid reimbursement rates and increasing minimum wage to direct care workers in Medicaid nursing facilities to $20 per hour. This would attract workers from Southern Massachusetts, he predicted.

The attending candidates also gave their thoughts as to their strategies for Medicaid rebalancing and the program’s expansion to improve home and community-based care opportunities along with ensuring financial viability of nursing homes.

Muñoz called for a targeted approach to supplementing wages for providers taking care of seniors, noting that “twenty dollars is not a livable wage. We lost the culture of taking care of people,” he said, “but it will take money, increasing providers; but programmatically the state needs to make a commitment to expand its community and home-based programs working with multiple departments, to bring back this culture of care.”

Brown warns that 87 percent of nursing homes are in risk of closing and the state must address this by increasing Medicaid rates so as to give these facilities the financial stability they need. As to home care, pay must be increased to direct home care workers. But do not forget about family caregivers.

“We do not have an adequate paid Family Leave program in the state,” he says. As Governor, Brown would call for creation of a program to give 16 weeks of adequate pay.

Kalus calls for seniors to be placed in the least restricted setting. There should be adequate senior housing available to allow a person to live independently in the community. “We must reimage the continuum of care,” says Kalus, stressing that different types of care must be working together.

According to Kalus, if you go to a hospital there should be an incentive to discharge you to a nursing home with rehab, if that is possible, and then provide an incentive to move a person to less restricted continuum of care from there, such as home care and then independent living. An organization, like an Accountable Care Organization, must ensure there are no incentives to keep you in one type of care environment, over a less restrictive one, she says.

McKee touted the $10 million dollars invested this year to rebalance the long-term care continuum. He announced that he plans to shortly issue an Executive Order to direct state agencies to review existing policies through a healthy aging lens and address accessibility and impacts on Rhode Island’s aging population. He will also direct state agencies to appoint a representative to the task force that will create a Statewide Aging Plan.

Foulkes called for the state to create a long-term comprehensive plan for providing programs and services for seniors. Politicians seem to implement short term fixes year to year, making small timeframe moves. She urges improving discharge planning and technology and compensating family members to keep seniors at home. Nursing home care should be changed to provide single rooms with single-use bathrooms to ensure their dignity of living in a nursing home, and prevent spread of infectious diseases, a lesson learned from the pandemic.

Gorbea says Rhode Island is “clearly off the mark” as to how it spends its Medicaid dollars on home care services. Twenty six percent of the state’s Medicaid budget is spent on home care, compared to many states allocating over 41 percent. “That’s where we have to go,” she says. “If you are going to encourage people to stay at home, you must have housing and transit options,” she notes.

In Retrospect…

“While there were similar opinions, each candidate presented their own perspective,” said SACRI’s Beaudreau, noting that he did not hear anything anyone said that would be objectionable to aging advocates. “We now have on record their pledge and commitment that there will be a plan and anaction agenda that will benefit all seniors of the state,” says Beaudreau, “if they are elected Rhode Island’s 77th Governor next November.

“It is clear we have a slate of very quality candidates,” says Beaudreau at the conclusion of the forum.

Maureen Maigret, chair of the Long-Term Care Coordinating Council’s Aging in Community Subcommittee and SACRI Board Member stated, “the Forum exceeded my expectations in terms of attendance (in-person and virtual), and I consider it an absolute success.”

Maigret reported that all candidates supported: “making the Office of Healthy Aging a full cabinet/department with review of sufficiency of resources; expansion of Medicare Savings Program which I have been advocating for at least 5 years and adding a state COLA to SSI payments; requiring better data on minority older adult inclusion; addressing community living, housing and transportation needs of older persons and developing and implementing a comprehensive, interdepartmental strategic Plan on Aging.

What was most important is that this event made them really pay attention to the fact the state has a significantly growing number of older persons which calls for transformative change. By highlighting some policies needed to address these demographic changes and getting candidates on record in support of them, they can be held accountable,” says Maigret. “The other significant outcome was to have so many co-sponsors come together in support of the policies put forward,” she added.

“There needs to be immediate leadership and follow-thru with all appropriate stakeholders to design and implement a seamless state/local delivery system for “aging in place” services, including increased care payments and efficient reimbursement to providers,” says Vincent Marzullo, well-known aging advocate who served as a federal civil rights and national service administrator. “With vision and commitment, Rhode Island can be a more appealing retirement community by aggressively addressing healthcare disparities and elevating the RI Office on Healthy Aging to full Departmental status with broader authority/responsibilities. This conversation must now include our General Assembly leaders,” said Marzullo, a West Warwick resident who serves on SACRI’s Board.

Co-sponsoring this event was a broad coalition of 18 service providers and advocates: 

A Community Together, Alzheimer’s Association of RI, Carelink, Community Partners Network of RI, Economic Progress Institute, Leading Age RI, NAACP Providence Branch, Ocean State Center for Independent Living, PACE, Progreso Latino, RI Assisted Living Association, RI Elder Info, RI Health Care Association, RI Organizing Project, RI Senior Centers Directors Association, SEIU Healthcare 1199, Senior Agenda Coalition of RI and Village Common of RI.

To watch the forum, go to https://www.youtube.com/watch?v=okQ5FguKMao.

For info about the Senior Agenda Coalition of Rhode Island, go to https://senioragendari.org/.