Tag Archives for Chris Gadbois

Hoarding and seniors: “The Consequences of Clutter” Report 

Published in RINewsToday on July 22, 2024

With the number of seniors afflicted with a hoarding disorder expected to skyrocket to over 14 million, on July 2 U.S. Sen, Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, unveiled a report putting the spotlight on its impact on older hoarders and their communities.  For seniors those consequences include health and safety risks, social isolation, eviction, and homelessness. For communities, those consequences include public health concerns, increased risk of fire, and dangers to emergency responders.

According to the report, citing the Administration for Community Living’s 2020 Profile of Older Americans, the number of seniors in the U.S. is expected to increase from about 54 million in 2019 to over 94 million in 2060. “Because hoarding disorder disproportionately impacts older adults, experts worry that aging could fuel a rise in hoarding in the coming decades,” notes the report, quoting NPR Morning Edition’s Rose Conlon. 

According to the Majority Staff of the Senate Aging Committee who wrote the report (with a whopping 270 citations), it was developed for information purposes only and does not represent the findings or recommendations formally adopted by the Committee.

Hoarding is a chronic and progressive condition

The report notes that this chronic and progressive condition impacts roughly two percent of the general population, while it affects about six percent of those over the age of 70.

“Hoarding disorder is a heartbreaking condition that is posing challenges to older adults, their families, and their communities across the country,” said Chairman Casey (D-PA) in a July 2 statement announcing his report. “The federal government has an obligation to ensure that Americans can age with dignity and this report makes clear that obligation must include doing more to address hoarding disorder,” he says.

According to Casey, the new report, “The Consequences of Clutter: How Hoarding Disorder Affects America’s Older Adults, First Responders, and Their Communities,” demonstrates the scope and severity of the challenges of this complex mental health condition and offers a path forward for how we can help people, communities, and local governments contend with this condition. 

Local communities throughout the United States are already working to address cases of hoarding disorder, including through the formation of hoarding task forces to coordinate response efforts, says

Casey’s report, noting that the local resources  available often do not correspond with the level of challenge communities are facing. 

Casey’s report issued a series of nine recommendations for how the federal government can increase support to communities that are contending with hoarding disorder, including expanding access to treatment for the condition, providing local officials with more extensive guidance and training to support afflicted individuals, and expanding the scope of tracking and research about how hoarding disorder is affecting individuals and communities nationwide.

The report compiles 55 requests for information, responses, and stakeholder statements submitted by non-profits, social services organizations as well as state and local governments to gather information to better understand the impact of hoarding in local communities. 

“Overall, the report does a good job of outlining the importance of the topic and identifies the federal and state agencies that should be involved in assessment and intervention,” says Randy O. Frost, professor emeritus of psychology at Smith College and a leading researcher on hoarding and related topics.

“Hoarding Disorder is a relatively [recognized] new disorder, having just entered the DSM in 2013. Consequently, there are not identified agencies who can claim ownership of the problem and the potential solutions.” This report legitimizes this problem for attention from these agencies, says Frost, noting that this report also highlights the fact that the prevalence of hoarding is extremely high among the elderly.

“Severe cases are sometimes life threatening for the individual and those living nearby or those called in to provide help,” adds Frost.

An Expert’s take…

According to Frost, the report covers the important issues related to hoarding, including education of the general public as well as family, friends, and people suffering with the problem. It highlights the need to train professionals in best practices for intervention. An important assumption underlying the report is that this is a problem which touches many different social service disciplines, from first responders to assisted living facilities, adult protective services, animal control, mental health, public health, child health, elder services, etc. “When a local case is identified, in current practice, it is not unusual for 4 or 5 of these agencies to be involved, often not knowing what each other are doing. Integration among these agency professionals is crucial for dealing with hoarding efficiently,” he says.

“There is a lot more that could be said about this problem, and a lot more detail could have been included regarding specific recommendations,” he said, stressing that this was not the purpose of the report. “The report was to outline the problem and point different agencies in appropriate directions moving forward. It does so and is a welcome effort from a federal agency,” he says.

Spotlight on Rhode Island

“Hoarding is a serious problem that has apparently not been adequately addressed in Rhode Island as well as in the nation as a whole,” charges long-time advocate for vulnerable and marginalized populations Susan Sweet, former associate director of the Department of Elderly Affairs, and founder of the Rhode Island Minority Elder Task Force (RIMETF).  “While it is present in all age groups, adults over 60 years have the highest level of hoarding behavior and the most risk because of diminished physical and often cognitive abilities,” she says.

“This report outlines the difficult life circumstances that elders with the problem of hoarding face.  The Rhode Island network of aging programs and advocates for older adults do not have the resources to create and implement effective remedies,” warns Sweet. “I hope that shining a light on the issue will encourage policy, funding, and attention to what is a mental health issue and a complication in physical illnesses that create obstacles in attempts to help elders afflicted with the disorder,” she says.

According to Sweet, the Ocean State is one of the few areas and the only state that has organized a Hoarding Taskforce to point the way towards effective client management, education and training of eldercare healthcare, mental health programs and social work entities.  The health and well-being of individuals and communities is greatly impacted by the fire hazards, evictions, safety issues, and other self-neglect problems that occur with hoarding behavior.

“Awareness of the prevalence of hoarding and the danger to our communities and citizens should quicken the pace of funding and support to combat this growing threat,” says Sweet.

Like Sweet, Robin Covington, a member of Rhode Island’s Hoarding Task Force, sees the value of the released Senate Aging Committee’s report on hoarding and its recommendations. “As an adult protective services caseworker I saw firsthand the implications of hoarding,” said Covington, who serves as Coalition Director of Saint Elizabeth Haven for Elder Justice. “Hoarding creates health, fire hazard and safety risks, social isolation, eviction and homelessness,” she said. 

“Often times, people who hoard don’t think they have a problem because of their attachment to their possessions, which makes it difficult to deal with”, says Covington.  Because of its behavioral aspects a person with this behavior needs clinical assistance, she notes, not just decluttering of personal items. 

Covington believes that there is a lack of programs and clinical support in place in Rhode Island to address the increasing problem of hoarding. However, the state’s Hoarding Taskforce is working on helping support case managers and providers by developing a workforce initiative to support individuals with clutter or hoarding tendencies. 

Increase funding for Case Manager interventions

But more funding must be given to Community Action Programs who subcontract with OHA to oversee Adult Protective Services. “It’s pricey to cover the costs of visits, intervention and coordination of a clean-up company,” Covington says. 

A lot of times when it is someone over 60, a report to Adult Protective Services is provided and a CAP agency case manager goes out and visits the older adult to put eyes on them and to help with an intervention like the coordination of a clean-up company, but that can be expensive, notes Covington. 

As a Licensed Clinical Social Worker for over 23 years and RIMETF’s president  Lori Brennan-Almeida has seen the negative impact of hoarding up close.  For over 20 years, she has seen RIMETF provide emergency assistance to seniors age 55 and over to pay for services to clean their apartments to avoid eviction.

“Clinical intervention is necessary to stop seniors from hoarding”, says Almeida, stressing the importance of home-based therapy. “Grief counseling may be needed because a person often forms an attachment to compensate for a personal loss,” adds Brennan-Almeida.  

“Without counseling, hoarding may well continue after the debris is gone from their apartment and the senior will just collect more items”, says Brennan-Almeida.  

Keeping tabs on hoarding

“This is our first ever hoarding report,” says Misha Linnehan, Deputy Press Secretary for Sen. Casey.  When asked if there would be a follow-up report next year, she stated: “There are currently no plans for another but it is always a possibility.” 

Kudos to Chairman Casey and the Majority Staff for putting resources, time and effort into crafting this report.  For those people in the trenches, future reports should be written and formal Senate Aging Committee hearings held to keep tabs on this growing problem and to determine if the recommendations from this first report are being implemented. 

Don’t drop the ball on this one.

RI Hoarding Task Force

Janet Spinelli and Kelly McHugh are co-chairs of the RI Hoarding Task Force which is convened through the RI Elder Mental Health and Addiction Coalition co-chaired by Chris Gadbois and Janet Spinelli. 

The RI Hoarding Task Force has two committees including the HD Task Force Toolkit Development Committee lead by Christopher Liu, an undergraduate at Brown University and the HD Task Force Website and Outreach Committee.  

Anyone interested in joining the Task Force can email RIEMHAC@gmail.com  More information and resources can be found at RIHoardingtf.ri.gov which is supported through the EOHHS Money Follows the Person Program.

For download a copy of the Senate Aging Committee’s hoarding report, go to chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.aging.senate.gov/imo/media/doc/the_consequences_of_clutter.pdf

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.