The Growing Incidence of Alzheimer’s

Published in Pawtucket Times on April 26, 2016

While Congress and states are nation grappling with how to put the brakes to one of the largest public health crises in recent times, the escalating Alzheimer’s disease (AD) epidemic, the Chicago-based Alzheimer’s Association releases its annual snap shot detailing statistics on the impact of Alzheimer’s and dementia on caregivers and health care costs..

According to the 2016 Alzheimer’s disease Facts and Figures, released on March 30, 2016, this year nearly 16 million Alzheimer’s caregivers will provide 18 billion hours of unpaid care to 5.4 million afflicted with this devastating disorder. That care had an estimated value of $221.3 billion, says the report.

But that’s not all, this recently released report notes that two out of three people believe that Medicare will help them over costly nursing facility costs. Sorry it won’t. AD also has a direct impact on a caregiver’s pocketbook, too, the researchers found. More than one-third of those surveyed say they were forced by caregiving duties to reduce their hours at work or just quit their job entirely. As a result of these actions their income dropped by $15,000 compared to the previous year. Eleven percent of caregivers were forced to cut back on spending for their children’s education in order to provide support.

The 79 page Alzheimer’s Association report notes that both physical, emotional and financial support required by a person with AD may ultimately deprive family and friend care givers basic necessities, such as food, transportation and medical care. The Facts and Figures report reveals that these caregivers were 28 percent more likely to eat less or go hungry while contributing care to someone with AD, and one-fifth even sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of the caregivers say they cut back on their own expenses to afford dementia-related care for their family member or friend.

“The devastating emotional and physical effects of caring for a person with Alzheimer’s disease has been well-studied,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “However, this new report shows, for the first time, the enormous personal financial sacrifices that millions of care contributors must make every day. These sacrifices jeopardize the financial security of individuals and families, as well as their access to basic needs and health care.”

This year’s Facts and Figures report found that 13 percent of family or friend caregivers sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, caregivers, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with AD; however, amounts varied with many spending tens of thousands of dollars per year.
Incidents of AD is Fast Growing

The Facts and Figures report says that out of the 5.4 million (of all ages) afflicted with AD, an estimated 5.2 million are age 65 and over. Yes, one in nine people having the cognitive disorder. Approximately 200,000, having early onset AD, are under age 65.

Also, the recently released Facts and Figures report warns that we are truly in the midst of an AD epidemic as the baby boomers grow older. By 2050, researchers say that someone in the United States will develop AD every 33 seconds. Without a medical breakthroughs to prevent or cure, the age 65 and over population with AD, the incidence is expected to nearly triple, from 5.2 million to a projected 13.8 million. Some say may be even as high as 16 million. It’s the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. .

Additionally, this year’s Facts and Figure report notes that AD is officially listed as the sixth-leading cause of death in this country. It is the fifth-leading cause of death for people age 65 and older. With the graying of America, AD will become a more common cause of death. At age 70, 61 percent of those with AD are expected to die before the age of 80 compared with 30 percent of people without the cognitive disorder — a rate twice as high, says the report.

The Typical Care Giver

The Facts and Figures report puts the face on a typical caregiver. Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older. Forty one percent have a household income of $50,000 or less.

AD takes a devastating toll on the health of caregivers, says the Facts and Figures report. Nearly 60 percent of those taking care of loved ones with Alzheimer’s and dementia report that their emotional stress being high or very high. About 40 percent suffer from depression. One in five care givers cut back on their own physician visits because of their caregiving responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.

A Huge Cost on the Health Care System

The report’s researchers warn that the AD epidemic might just bankrupt the nation’s Medicare program. In 2016, total payments for health care, long-term care and hospice are estimated to be $236 billion for people with Alzheimer’s and other dementias, with just under half of the costs paid by Medicare. Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars

Medicare and Medicaid are expected to cover $160 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.

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

A Call to Action

Yes, the AD epidemic is here, right in Rhode Island. Everyone is personally touched by either caring for a family member with the cognitive disorder or knows someone who is a caregiver or afflicted.

Following the efforts of Congress to create a national strategic plan to address the rapidly escalating AD crisis and to coordinate resources across federal agencies, the Rhode Island General Assembly passed a joint resolution enacted into law to direct the Lt. Governor’s Long Term Care Coordinating Council (LTCCC) to be the vehicle to develop a state plan to address this growing public health crisis in the Ocean State. Ultimately, for over a year former Lt. Governor Elizabeth Roberts along with LTCCC members, former Division of Elderly Affairs Director Catherine Taylor, the state Chapter of the Alzheimer’s Association, universities and health care organizations with the public input gleaned from 8 listening events hammered out the 122 page battle plan with over 30 pages of recommendations.

In 2016, Lt. Governor Daniel J. McKee has picked up the ball and convened a meeting of the Executive Board on Alzheimer’s Disease and Related Disorders, consisting of researchers, advocates, clinicians and caregivers, to begin efforts to implement recommendations from the State’s Alzheimer’s Plan. The group will determine which recommendations are outdated.

With a rising population of Rhode Islander’s with AD, state policy makers must act swiftly and lose no more time in addressing this terrible disease and public health issue.

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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.