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/

Fixing rising pharmaceutical drug costs once and for all

Published in RI News Today on September 27, 2021

Just days ago, WBUR.org, Boston’s NPR News Station, featuring NPR News and Programs, aired a 45.37 minute program, “Steps to Fix America’s Broken Prescription Drug System,”  clearly illustrating the need to fix America’s ailing prescription drug program.  While Americans are traveling to Mexico in search of affordable prescription drugs, referred to as “Pharmaceutical Tourism,” the NPR program added a new twist. Now some state insurance companies are sending their beneficiaries to Mexico to purchase cheaper their pharmaceuticals manufactured in the United States at a lower price, on their tab.  

For instance, let’s take a look at Ann Lovell, of  Salt Lake City, Utah. The NPR Program, aired on Sept. 24, 2021, introduced us to the hearing-impaired former teacher who worked at an early-intervention program for deaf students that’s part of the Utah Schools for the Deaf and Blind, who traveled from Utah to Mexico five times to purchase Enbrel, to treat rheumatoid arthritis, with travel costs and a $500 cash incentive paid by her insurer, the Public Employees Health Program (PEHP). 

Lovell’s Utah physician writes her a prescription, and each tie she travels to Mexico she sees a physician at the Tijuana-based hospital as well.  She updates the physician on her medical condition, gets her prescription, and takes it to the pharmacist, who gives her the medication. 

NPR’s program noted that the Utah initiative was created under a 2018 state law, “Right to Buy,” by Republican Congressman Norm Thurston.  PEHP offers it only for people who use a drug on a list of about a dozen medications were the state can see significant savings.  Of the 150,000 state and local public employees covered by the insurer, fewer than 400 are eligible to participate.

Responding to a tweet promoting the offer, Levell quickly enrolled for as they say an offer she could not refuse.  She and a companion would travel on an all-expenses paid trip from Utah to Tijuana, Mexico to pick buy her pharmaceuticals at a steep discount paid for by the state of Utah’s public insurer to slash the high cost of prescription drugs. PEHP would only have to pay half of the cost of Embrel versus if Levell got it in the United States, saving tens of thousands of dollars. The annual U.S. list price for the drug, Enbrel, is over $62,000 per patient. 

It was one long, exhausting travel day.  At 5:00 a.m., Lovell and her friend flew from Salt Lake City to San Diego.  There, an escort picked them up and took them across the boarder to a Tijuana hospital, where she got a refill on her prescription.  After that, they were shuttled back to the airport and arrived back home by midnight. 

Lovell said she initially began paying $50 a month for her pharmaceutical, increasing to $450 in co-pays.  It would have increased up to $2,500 if she hadn’t started traveling to Mexico.  Without the program, she would not be able to afford the medicine she needed

With the COVID-19 pandemic closing the borders, PEHP’s “Pharmaceutical Tourism” initiative came to an end with the borders closing.   Lovell’s insurer came up with a new option of getting Enbrel at lower cost.  That’s when Lovell was told about the drug manufacturer’s coo-pay program where she would only have to pay five dollars a month.  

Calls for Medicare Negotiating the Cost of Pharmaceuticals 

Although traveling to Mexico or Canada to purchase more affordable pharmaceuticals is a temporary fix, the Washington, DC-based AARP calls for a permanent solution.  The national AARP advocacy group has launched a $4 million ad buy calling Medicare to step in to lowering the spiraling costs of pharmaceuticals.  

The Washington, DC-AARP noted that a recent AARP survey of voters found that 80% agreed or strongly agreed that drug prices could be lowered without harming innovation of new medicines. Strong majorities of voters, regardless of political affiliation, want Congress to act on the issue this year, with 70% saying it is very important. The survey also found that 87% of voters support allowing Medicare to negotiate prescription drug prices. 

AARP’s full-scale ad campaign blitz, including a $4 million ad buy, pushing back on false claims from the pharmaceutical industry that reforms would limit Americans’ access to medicines. AARP has called for fair drug prices for years and is urging Congress to pass legislation that would allow Medicare to negotiate drug prices, put a cap on out-of-pocket costs that older adults pay for their prescription drugs and impose penalties on drug companies that raise prices faster than the rate of inflation.

AARP’s new national ad campaign points out that Americans’ tax dollars subsidize new drug development even as Big Pharma charges Americans dramatically higher drug prices. The ad goes on to urge Congress to “stop the Big Pharma scam. Let Medicare negotiate drug prices.” Beginning tomorrow, it will air nationally on MSNBC and CNN; and in the DC metro area on the Sunday political shows and local radio stations, as well as on digital platforms including the New York Times, Washington Post, CNN, and Politico. In addition to paid advertising, AARP members began taking part in grassroots action beginning September 20. A social media campaign calling for older adults to #ShowYourReceipts has led thousands to share their monthly medication costs with AARP, with their monthly “bills” now running over $11 million.

“Americans are fed up with paying the highest prices in the world for prescription drugs,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer in a Sept. 17, 2021 statement announcing this advertising campaign. “Our 38 million members are watching and they are counting on their members of Congress to do what’s right and vote to let Medicare negotiate for lower drug prices.”

Now, Congress Must Act…

Congress is currently debating measures to rein in the cost of prescription drugs, and the House Ways & Means Committee advanced legislation this week that includes many of AARP’s priorities on fair drug prices.