Category Archives for Caregivers

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.

The crafting of Rhode Island’s first State Plan on Caregiving

Published on February 28, 2022 in Rhode Island News Today

Rhode Island has the distinction of having one of the highest percentages of adults aged 85 and over in the country. In 2017, out of a population of 1,060,00 there are more than 136,000 caregivers providing 114 million hours of care, says AARP Rhode Island.  More Rhode Islanders will be thrust into caregiving roles in the coming years.

In response to the continued aging of Rhode Island’s population, the Rhode Island Office of Healthy Aging (OHA) and Family Caregiver Alliance of Rhode Island officially released Rhode Island’s first State Plan on Caregiving.  The state’s new Plan for Caregivers serves as the framework for the crafting and implementation of new policies, as well as the expansion of various existing programs and partnerships to assist caregivers. The Plan serves to strengthen and advance the shared mission of OHA and the Family Caregiver Alliance of Rhode Island at the United Way (FCARI)  to promote choice, independence, empowerment, and the overall well-being of older adults, individuals with disabilities, and their caregivers.  FCARI is supported with funds from OHA.

As an advocate for caregivers throughout the state, The FCARI serves as the administrator of the 29-page Plan which extends through Sept. 2023. 

A Call for Supporting Rhode Island’s Caregivers

“The COVID-19 crisis has exacerbated many of the challenges faced by our older adults and their caregivers, particularly social isolation,” said Interim Director Michelle Szylin announcing the release of this report on Sept 24, 2021. “Caregivers have a tough job and often receive little support. Through the development of this State Plan, we’re showing our commitment to strengthening resources available for our caregivers and better supporting the important work they do across our state,” she says.

Adds Maryam Attarpour, Program Manager, Family Caregiver Alliance of Rhode Island at the UWRI, “Caregiving has been and will always be a major part of the fabric of our society.” Attarpour says that the new State plan puts the needs of family caregivers first. “Our goal is to create a state that is equitable, inclusive, and supportive of our family caregivers, and the loved-ones they care for,” she says.

According to the statement, the State Plan on Caregiving also builds on the state’s existing efforts to meet the needs of Rhode Island caregivers of any age.  It provides an overview of the existing support network available for family caregivers to access as well as addresses the work that remains to ensure equitable access to resources and advocacy. 

One of the key areas of support that the plan focuses on is developing a comprehensive, robust website and social media presence for FCARI that will serve as a hub of information for resources and information for caregivers. It will also ensure diversity, equity, and inclusion for Rhode Island Caregivers and those for whom they care, too.

The State Plan will also ensure that the caregivers of Rhode Island seeking long term services and supports are identified and provided with information assistance and advance  opportunities for digital access (iPads, notebooks, computers and phones) to better serve and support Rhode Island Caregivers.

Over the years, the Rhode Island General Assembly has worked closely with aging advocates to enhance supports and resources for the state’s caregivers.  The State Plan calls on lawmakers to review existing laws to determine if they need to be refined or better funded.  It also suggests that legislation that has been submitted and not passed as well as laws and policies from other states be reviewed for “relevancy for supporting Rhode Island family caregivers.

Putting a Face on Family Caregivers

On Feb. 15th, Maureen Maigret, Chair of the state’s Long-Term Care Coordinating Council’s Aging in Community Subcommittee, told members of the Rhode Island House Oversight Subcommittee on Aging & Senior Services, the importance of hammering out sound policy to support the state’s growing number of caregivers.

Maigret painted a picture of the typical care recipient, citing the 2020 Report, Caregiving in the U.S., to the attending House lawmakers. “Eighty nine percent of the care recipients are a relative, with 50% being either a parent or parent-in-law, spouse/partner (12%), grandparent/grandparent-in-law (8%), sibling/sibling-in-law (7%), adult child (6%) or nonrelative (10%), she said, noting that the average care recipient’s age is 68.9.

While 61% of the caregivers are women, 39% are men, adds Maigret, noting that 61% are white, 14% African American and 17% Hispanic.  The age of most caregivers falls between ages 60-65, says Maigret, noting that younger adults also find themselves having to provide caregiving chores.  Twenty-four percent of persons ages 18-34 and 23% of person’s ages 35-49.

It’s not easy to be a caregiver, says Maigret. She warned that caregivers should be considered “the hidden patient” because they are at risk for becoming depressed, extremely fatigued, stressed, feeling overwhelmed, being socially isolated, losing income and having physical health problems.

Maigret’s presentation was followed by a panel led by Acting OHA Director, Michelle Szylin, and her staff who provided information on programs OHA offers to assist caregivers including subsidized respite, home care and adult day services and special pilots to support those caring persons with Alzheimer’s disease.

“Although our legislature and Governor have been supportive of funding programs to support caregivers, the growth of our older population means more persons will need to become caregivers,” said Maigret. “We need better state programs and services to provide physical, emotional and financial support, and enhanced access to information about available resources,” she said.

Maigret adds: “There is also an urgent need to address the direct care worker crisis by providing the workers with fair and competitive wages.  Many caregivers need to supplement the services they provide with paid caregivers if they are in the workforce, or need to take care of other family needs. Yet due to the low wages paid for personal care workers, it is not always possible to find such help.”

For a copy of the State Plan on Caregiving go to https://fcari.org/state-plan-on-caregiving/