Category Archives for Caregivers

A Call for Supporting the Nation’s Caregivers

Published in RINewsToday on June 12, 2023

Just 519 days until the 2024 Presidential Election (Nov. 5, 2024), older voters call on Congress to provide more support for the nation’s family caregivers, according to a new AARP Family Caregiving study, released on May 5, 2023, conducted by the bipartisan polling team of Fabrizio Ward and Impact Research.

Former First Lady, Rosalynn Carter, observed that “there are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” The results of AARP’s survey of U.S. registered voters, compiled in the 26-page report, U.S. Voters’ Views on Support for Family Caregivers, gives weight to the truth behind Carter’s quote as one-third of the voters in this study were caregivers in the past, one-fifth are currently caregivers, and half expect to be a caregiver in the future.

Caregivers Call for Government Support 

According to AARP, this is especially true for those age 50 and older: over two-thirds of voters, and 75% of voters 50+, say it is very important for Congress to help seniors live in their own homes. More than half (57%) say the same for supporting unpaid family caregivers, notes the poll’s findings.

An overwhelming majority of voters, 78%, are either a current, past, or future family caregiver. Over 70% of voters across the political spectrum say they would be more likely to support a candidate who backed proposals to support family caregivers, such as a tax credit, paid family leave, and more support and respite services.

“Family caregivers are the backbone of a broken long-term care system, providing $600 billion in unpaid labor each year and saving taxpayers billions,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy and Engagement Officer in a statement announcing the release of the poll findings. “It is long past time for lawmakers to enact commonsense solutions that support family caregivers and help older Americans live independently in their homes, where they want to be,” she says.

The poll’s findings indicate that legislative caregiving proposals are strongly supported across party lines: 89% of Democrats and 72% of Republicans support expanding services to help seniors live at home in the community rather than in a  nursing home. Requiring minimum staffing standards in nursing homes so residents receive quality care is supported by 8 of Democrats and 74% of Republicans polled in this survey. 

The researchers say that black voters, women, Democrats, and Latinos are especially likely to see long-term care and support for caregivers as key issues to be addressed by Congress. Among those groups, 77% of women, 82% of Black voters, 71% of Latinos and 77% of Democrats say expanding services to help seniors live independently in their own homes instead of a nursing home is very or extremely important.

Most caregivers feel stressed emotionally, stretched thin in both time (18%) and money (18%), and overwhelmed; 40% of all family caregivers say they spend over 20 hours a week on caregiving, with almost half (48%) of women caregivers spending over 20 hours a week.

“Anxiety over caregiving is not limited to those currently providing care,” says AARP, noting that more than two-thirds of voters express concerns about whether they will be able to get the care they need as they grow older or live independently.

“The data is clear: regardless of your political stripes, people adamantly want to age at home rather than a nursing home,” said Tony Fabrizio, partner in Fabrizio Ward, noting “It’s why support for helping caregivers is so politically important.”

“Family caregivers are stressed emotionally and financially, and proposals to help them are overwhelmingly popular and key to helping older Americans remain in their homes,” said John Anzalone, founder of Impact Research. “This may be the sleeper issue of the 2024 elections with a voting group that makes up one in five Americans,” he says.

Caregivers Need Assistance

For many caregivers, providing care to their loved ones takes a big chunk out of their yearly finances, and time that they must give to providing the caregiving. According the AARP’s report, four in ten family caregivers report spending over 20 hours a week on their caregiving responsibilities, while roughly six in ten incur $1,000 or more in annual out-of-pocket expenses on items such as medical supplies and equipment, transportation, or home modification. Emotional stress, having to miss important events, and needing to balance their work, family, and caregiving responsibilities are impact the majority of family caregivers.

When asked what they would like Congress or their state government to do, family caregivers say they would like increased access to healthcare and financial support. Seven in ten voters ages 18 and older say they would be more likely to support a political candidate who backed legislative proposals to support family caregivers, such as paid family leave; a tax credit of up to $5,000; and expanded access to support and respite services. These policies would allow family caregivers an opportunity to take a break from caregiving, helping to prevent their burnout and allowing them to continue providing caring for their loved ones.

According to the polls findings, most voters ages 18 and older express concern about whether or not they will be able to get the care they need when they grow older. Roughly two-thirds says they are concerned they won’t have enough money to pay for the care they need, or they won’t be able to live independently at home, while six in ten are worried that they will need to live in a nursing home providing poor care.

The Support for Family Caregiving study was conducted by the bipartisan polling team of Fabrizio Ward and Impact Research for AARP. The poll used a sample of U.S. voters age 18 and older (with oversamples of voters age 50 and over, black voters, Hispanic voters, Asian and Pacific voters and family caregivers) using a combination of phone and text to web sampling. A total of 1,425 completed 20-minute in length interviews, were  conducted in English from April 4-10, 2023.

The margin of error for the 1,425 adults’ sample is +/- 3.4% at the 95% level of confidence. For the oversampled groups, the margins of error are: +/- 3.4% for voters 50+, +/- 6.9% for Black and Latino voters, +/- 8.9% for AAPI voters, and +/- 4.9% for voters 50+.

To see poll findings, go to https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2023/voters-views-caregiving-support-report.doi.10.26419-2Fres.00616.001.pdf.

For more details, contact Teresa Keenan, AARP’s Director, Consumer Insights, Health and Health Security, at TKeenan@AARP.org.

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.

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.