Efforts to Revise State Alzheimer’s Plan are in Full Swing

Published in Woonsocket Call on February 25, 2018

By Herb Weiss

Lt. Governor Dan McKee is gearing up Rhode Island’s fight against the skyrocketing incidence of Alzheimer’s disease, called by some as one of the ‘biggest epidemics in medical history.’ Last Wednesday, he announced $30,000 in grants secured by his office and the Rhode Island chapter of the Alzheimer’s Association to hire a consultant to update the state’s five-year plan on Alzheimer’s Disease and Related Disorders. Tufts Health Plan Foundation and the Rhode Island Foundation each pledged $15,000 to support the rewriting of the initial State Plan.

Updating the State’s Alzheimer’s Plan

The updated State Plan, to be created by a collaborative effort of the Rhode Island chapter of the Alzheimer’s Association, the Division of Elderly Affairs and the Office of the Lt. Governor, will provide state lawmakers with a road map for the state, municipalities and the health care system, to confront the continuing Alzheimer’s crisis. It will take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and outlines what steps the state must take (legislatively and regulatory) to improve dementia-capable programs and services for people with Alzheimer’s and their family caregivers.

Lt. Governor McKee and the Executive Board of the Alzheimer’s Disease and Related Disorders, a working group of comprised of distinguished researchers, advocates, clinicians and caregivers, are now beginning their efforts to meet their deadline by the end of 2018 of having a completed state plan to submit to the Rhode Island General Assembly.

With financial support provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, can now hire a consultant to assist in updating the initial state-five-year plan approved by the Rhode Island General Assembly in 2013. Once the updated report is completed and approved by the Rhode Island General Assembly, the Executive Board can will seek legislative and regulatory changes to carry out its recommendations to ensure that it is more than just a document—that it comes to shape the state’s public policies on Alzheimer’s.

“Rhode Island has been a national leader in Alzheimer’s research. Each day, we make great strides in expanding clinical trials and innovating treatments. Over the last few years alone, the local landscape of prevention and treatment has changed dramatically and positively. The updated State Plan will be an invaluable tool for local leaders, researchers, physicians, advocates and families as we work together to build momentum in the fight against Alzheimer’s,” said Lt. Governor McKee.

“A Living Document”

“We face an emerging crisis with the prevalence of Alzheimer’s disease projected to increase to as many as 27,000 Rhode Islanders by 2025. Alzheimer’s disease is a pivotal public health issue that Rhode Island’s policymakers cannot ignore. With the rapidly growing and changing extent of the Alzheimer’s crisis, it is essential that Rhode Island’s State Plan becomes a living document that stakeholders regularly consult and re-evaluate,” says Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter.

“Communities have greater interest in age-friendly initiatives. There’s a growing understanding of the critical role older people play. They are an asset to community, and their voices and insights are invaluable to the public discourse on what communities need,” said Nora Moreno Cargie, vice president, corporate citizenship for Tufts Health Plan and president of its Foundation.

“A coordinated, strategic approach to Alzheimer’s will lead to better outcomes and healthier lives. Working with generous donors, we’re proud to partner with Tufts to fund this crucial work,” said Jenny Pereira, the Rhode Island Foundation’s vice president of grant programs.

Put Older Woman, Older Veterans on the Radar Screen

The updated state plan must address the growing needs of older woman and the state’s aging veterans population.

Maureen Maigret, Vice Chair of the Long Term Care Coordinating Council and Chair of its Aging in Community Subcommittee, suggests zero in on the special needs of older woman. “Alzheimer’s disease and related dementias is of special concern for older women as the they are more likely to suffer from the debilitating disease due to greater longevity, more likely to need long term care services and supports and are more often than men to be caregivers either unpaid or paid of persons with Alzheimer’s disease. The Aging in Community Subcommittee of the LTCCC has several pieces of legislation to strengthen support for caregivers and to enhance home and community based services,” says Maigret.

Last year, the USAgainstAlzheimer’s, (UsA2), released the issue brief, “Veterans and Alzheimer’s Meeting the Crisis Head on,” with data indicating that many older veterans will face a unique risk factor for Alzheimer’s as a direct result of their military career.

“Forty nine percent of those aging veterans age 65 ((WW2, Korea, Vietnam and even younger veterans, from the Iraq and Afghanistan conflicts in the coming decades), are at greater risk for Alzheimer’s compared to 15 percent of nonveterans over age 65,” say the authors of the issue brief.

UsA2’s issue brief pulled together research findings released by the U.S. Department of Veteran’s Affairs (VA). On study estimates that more than 750,000 older veterans have Alzheimer’s disease and other dementias, another noting that the number of enrollee with Alzheimer’s grew 166 percent from roughly 145,000 in 2004 to 385,000 in 2014.

The minority communities are at even greater risk for Alzheimer’s and minority veterans are predicted to increase from 23.2 percent of the total veteran population in 2017 to 32.8 percent in 2037, says a cited VA study.

The issue brief also cited one study findings that indicated that older veterans who have suffered a traumatic brain injury (TBI) are 60 percent are more likely to develop dementia, Twenty-two percent of all combat wounds in Afghanistan and Iraq were brain injuries, nearly double the rate seen during Vietnam – increasing these younger veterans’ lifetime Alzheimer’s risk.

The Rhode Island Foundation and the Tufts Health Plan Foundation grant funding was key to the Lt. Governor McKee being able to update its state’s plan to battle Alzheimer’s disease. It provides state policy makers with a roadmap o effectively utilize state resources and dollars to provide care for those afflicted with debilitating cognitive disorder. It is money well spent.

The Alzheimer’s Association will shortly issue a Request for Proposal (RFP) seeking a research consultant to assist in revising and updating e the State Plan. For details about the RFP of the State’s Alzheimer’s Plan, email Michelle La France at mlafrance@alz.org.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, healthcare and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.


Aging Report is “Rhode Map” for Change

Published on June 27, 2016 in Pawtucket Times

Next year look for the policy debate in the Rhode Island General Assembly to heat with Governor Dan McKee’s Aging in Community Subcommittee of the Long Term Care Coordinating Council (LTCCC) release of a sixty page report in June documenting the sky rocketing growth of the state’s older population and identifying strategies to allow these individuals to age in place and stay in their communities.

The Aging in Community Subcommittee was mandated by the enactment of the Aging in Community Act of 2014, sponsored by Senate Majority Whip Mary Ellen Goodwin and Representatives Christopher Blazejewski and Eileen Naughton. The Subcommittee, chaired by Maureen Maigret, Vice Chair of the Long Term Care Coordinating Council, and former Director of the Division of Elderly Affairs, staff from Rhode Island College, Brown University and the University of Rhode Island, representatives from state agencies, members of the senior community, and senior service providers.

According to Maigret, it has taken almost 18 months to gather data, host focus groups and to write the “Aging in Community” report. The report provides demographic data snapshot on the state’s older population and also inventories current services and resources. It also identifies challenges faced by older Rhode Islanders and recommends strategies to promote successful aging in community in these nine issue areas.

Maigret believes that this report may take the most comprehensive look at what aging programs and services are available to assist older Rhode Islanders age in place in their communities and it identifies what programs and services are lacking. “The State Plan on Aging does have some data and actions planned but does not comprehensively cover all the domains covered in the “Aging in Community” report,” she says.

A Demographic Snap Shot

In 2010, the report notes that over 152,000 Rhode Islanders were age 65, predicting that this number will sky rocket to 247,000 in 2030. By 2025, Rhode Island will be considered to be a “Super Aging” state where 20 percent of its population will be over age 65. The report noted that two years ago the population of New Shoreham, Little Compton, North Smithfield, North Providence and Tiverton had already reached “Super Aging” status.

The report added that 42 percent of over age 65 household incomes amounted to less than $30,000. Only 49 percent of the retirees have non Social Security retirement income. Fifty two percent of the older renters and 39 percent of the home owners were financially burdened with covering housing costs. Poverty levels for older Rhode Islander vary, from 7 percent in Bristol County to 18 percent in Providence County.

The LTCCC report notes that even with lower incomes older Rhode Islanders have a major impact on the state’s economy. They bring in over $2.9 billion dollars from Social Security pensions and $281 million in taxes into the state’s economy. Older workers account for 33,750 jobs throughout all job sectors.

Rhode Island’s retirees provide an estimated $ 149 million by volunteering and an estimated $ 2 billion in providing caregiving services to family and friends.

A Spotlight on Priority Recommendations

The Subcommittee’s findings were the result of interviews held with aging service providers, an examination of age-friendly best practices in other states and ten focus groups conducted with older Rhode Islander from across the state.

The focus groups attendees gave the Subcommittee valuable information. They stressed that Senior Centers were “highly valued.” Many expressed financial concerns for their current situation and into the future. Attendees were very concerned about the lack of transportation and lack of affordable housing. State customer service employees were viewed by many as “unfriendly.”

Dozens of strategies were listed in the LTCCC report for state policy makers to consider to better assist older Rhode Islanders to successfully age in their community in these nine issue areas: Information and Communication, Community Engagement, Transportation, Economic Security, Food Security and Nutrition, Housing, Supports at Home, Healthcare Access and Open Spaces/Public Buildings

The LTCCC report identifies priority strategies including the restoring of senior center funding based on a population-based formula and continuing RIPTA’s no-fare bus pass program for low income seniors and persons with disabilities. It also calls for increase payments for homecare and for restoring state funding for Elder Respite.

Maigret says that creating a coalition of aging groups to “build an age-friendly Rhode Island” is the next step to take. Businesses can also become “age friendly” and better understand the economic value of older Rhode Islanders bring to the state and its educational institutions, she says.

Political Will Required to Implement LTCCC Report Strategies

There must be a political will to implement the strategies of the LTCCC report, says Maigret, starting with the state’s top elected official. “Governor Raimondo’s proposed budget had added $600,000 in funding for senior centers but the Rhode Island General Assembly removed it,” she said, noting that the decrease in funding got caught up in the negativity surrounding Community Service grants. “We were fortunate the 2017 budget will still have $400,000 in funding for senior centers,” she says.

“Rhode Island’s older adult population contributes a great deal socially, economically, and intellectually to our communities. Ensuring that those Rhode Islanders who desire to age-in-place are able to do so only enriches our society,” said Governor Raimondo. “I’m pleased that Director Fogarty, and members of his senior staff, serve and work with the Long Term Care Coordinating Council and the Subcommittee on Aging in Community. The insight they gain from service with these committees helps to shape State policy and programs related to services for seniors.

“I applaud the members of the Subcommittee for their dedication to creating a clear, comprehensive report on aging that can be a catalyst for change in our state. Their work recognizes that Rhode Island’s older population is growing dramatically and that we must direct public policy to help them remain active and in their homes,” said Lt. Governor McKee. I look forward to supporting the strategies detailed in the Subcommittee’s report to help build stronger, healthier communities for all Rhode Islanders.”

Finally, House Speaker Nicholas Mattiello, also says that the Subcommittee report’s recommendations will also be studied closely next legislative session. “I will be reviewing the findings of the report in greater detail and I will confer with Representatives Chris Blazejewski and Eileen Naughton, who sponsored and advocated for the Aging in Community Act of 2014. Our older population in Rhode Island is a growing one and it is important that we continue to listen to their needs and be responsive. I commend the work of the subcommittee, as well as all those who participated in the focus groups. I would anticipate that any policy and financial recommendations will be fully analyzed by the members of the General Assembly in the 2017 session.”

The LTCCC’s “Aging in Community” report gives our policy makers a road map in reconfiguring the state’s fragmented aging programs and services. With the Governor, House Speaker and Senate President on board, we might just see legislative changes in the next years that might just be what we need to keep people at home and active in their community. Lawmakers must not act penny-wise and pound foolish when considering legislative fixes.

Both the executive summary and the full Subcommittee “Aging in Community” report are available on the Lieutenant Governor’s website at: http://www.ltgov.ri.gov and the general assembly website at: http://www.rilin.state.ri.us/Pages/Reports.aspx.

RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

Seeing a huge rise in Alzheimer’s Disease over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s Disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.