Report: Alzheimer’s Poses Greater Risk for Older Women than Men

Published in Pawtucket Times, May 11, 2014

According to the Alzheimer’s Association 2014 Alzheimer’s disease Facts and Figures report released last Month, a woman’s estimated lifetime risk of developing Alzheimer’s at age 65 is 1 in 6, compared with nearly 1 in 11 for a man. As real a concern as breast cancer is to women’s health, women age 60 and over are about twice as likely to develop Alzheimer’s over the rest of their lives as they are to develop breast cancer, says the this years’ report.

The Facts and Figures report, an official report of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The 75 page report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the detailed report has become the most cited source covering the broad spectrum of Alzheimer’s issues.

“Through our role in the development of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in 2010, in conjunction with Maria Shriver, we know that women are the epicenter of Alzheimer’s disease, representing majority of both people with the disease and Alzheimer’s caregivers. The recently released Alzheimer’s Association Facts and Figures examines the impact of this unbalanced burden,” said Angela Geiger, chief strategy officer of the Alzheimer’s Association. “Well-deserved investments in breast cancer and other leading causes of death such as heart disease, stroke and HIV/AIDS have resulted in substantial decreases in death. Geiger calls for comparable investments in research to reach the same levels of successfully preventing and treating Alzheimer’s as the other leading causes of death.

Adding to women’s Alzheimer’s burden, there are 2.5 times as many women as men providing intensive “on- duty” care 24 hours for someone living with Alzheimer’s disease, says the report, also noting that among caregivers who feel isolated, women are much more likely than men to link isolation with feeling depressed (17 percent of women verse. 2 percent of men).

Also noted in the 2014 Alzheimer’s’ Facts and Figures report released on March 19, 2014, the strain of caring for someone with Alzheimer’s is also felt in the nation’s workplace, too. Among caregivers who have been employed while they were also care giving, 20 percent of women verse. 3 percent of men went from working full-time to working part-time while acting as a caregiver. The report also noted that 18 percent of women versus. 11 percent of men took a leave of absence while 11 percent of women verses 5 percent of men gave up work entirely. Finally, 10 percent of women verse 5 percent of men lost job benefits.

Far Reaching Fiscal Human Impact of Alzheimer’s

Meanwhile the Alzheimer’s Association Facts and Figures report noted that there are more than 5 million Americans living with this devastating disorder, including 3.2 million women and 200,000 people under the age of 65 with younger-onset Alzheimer’s disease (see my May 9, 2013 Commentary). However, Alzheimer’s has far-reaching effects by impacting entire families. Also, it was reported that there are currently 15.5 million caregivers providing 17.7 billion hours of unpaid care throughout the nation, often severely impacting their own health. The physical and emotional impact of dementia care giving resulted in an estimated $9.3 billion in increased healthcare costs for Alzheimer’s caregivers in 2013.

The total national cost of caring for people with Alzheimer’s and other dementias is projected to reach $214 billion this year, says the 2014 Facts and Figures report, not including unpaid care giving by family and friends valued at more than $220 billion. In 2014, the cost to Medicare and Medicaid of caring for those with Alzheimer’s and other dementias will reach a combined $150 billion with Medicare spending nearly $1 in every $5 on people with Alzheimer’s or another dementia.

The Facts and Figures report predicts the cost numbers to soar as the baby boomers continue to enter the age of greatest risk for Alzheimer’s disease. Unless something is done to change the course of the devastating disorder, there could be as many as 16 million Americans living with Alzheimer’s in 2050, at a cost of $1.2 trillion (in current dollars) to the nation. This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending and a 400 percent increase in out-of-pocket spending.

The country’s first-ever National Plan to Address Alzheimer’s disease has a goal of preventing and effectively treating Alzheimer’s disease by 2025. Ensuring strong implementation of the National Alzheimer’s Plan, including adequately funding Alzheimer’s research, is the best way to avoid these staggering human and financial tolls.

Lack of Understanding of the Alzheimer’s’ Disease

“Despite being the nation’s biggest health threat, Alzheimer’s disease is still largely misunderstood. Everyone with a brain — male or female, family history or not — is at risk for Alzheimer’s,” said Geiger. “Age is the greatest risk factor for Alzheimer’s, and America is aging. As a nation, we must band together to protect our greatest asset, our brains.”

In 2010, the Alzheimer’s Association in partnership with Maria Shriver and The Shriver Report conducted a groundbreaking poll with the goal of exploring the compelling connection between Alzheimer’s disease and women. Data from that poll were published in The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which also included essays and reflections that gave personal perspectives to the poll’s numbers. For the first time, that report revealed not only the striking impact of the disease on individual lives, but also its especially strong effects on women — women living with the disease, as well as women who are caregivers, relatives, friends and loved ones of those directly affected.

Realizing the impact Alzheimer’s has on women — and the impact women can have when they work together — the Alzheimer’s Association is launching a national initiative this spring highlighting the power of women in the fight against this disease. To join the movement, visit http://www.alz.org/mybrain.

Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island and Coordinator of the Rhode Island Older Woman’s Policy Group, concurs with the findings of the Alzheimer’s disease Facts and Figures report. She calls for the education of elected officials on the facts about Alzheimer’s disease and its greater prevalence among women. “It is clearly a tragedy for the women effected with the disease, and can be devastating for their caregivers, mostly daughters, trying to keep them at home,” she says.

Maigret says that Alzheimer’s disease and other dementias at the state level have tremendous implications for this state’s budget. “Data show that in Rhode Island, about three-quarters of persons in nursing homes paid for by Medicaid are older women. An overwhelming number of them have some cognitive decline or dementia, she notes.

“We must do more to ensure that quality long-term care is available for persons with dementia and that robust caregiver support services are in place for the many families dealing with parents, spouses and other loved ones suffering from this disease,” says Maigret, stressing that government funding on research must also be greatly increased in the hopes of finding a cure or ways to prevent its onset.

Director Catherine Taylor, of the state’s Division of Elderly Affairs, believes that the Alzheimer’s’ Association’s released 2014 Facts and Figures report, about a woman’s lifetime risk of developing the devastating cognitive disorder verses breast cancer “really help us understand, in stark terms, what a public health crisis Alzheimer’s disease is, especially for women.”

Taylor notes that the Ocean State is in the implementation phase of its State Plan on Alzheimer’s disease and Related Dementias (see my November 13, 2013 commentary), where state officials are working to improve information, care and supports for every family that confronts Alzheimer’s disease. “The work will continue until there’s a cure,” she says.

“It’s important to note that new research findings also indicates that up to half of the cases of Alzheimer’s disease may be linked to risk factors “within our control,” states Taylor, adding that reducing the risk of developing Alzheimer’s disease may be a simple as eating a healthy diet, staying active, learning new skills, and maintaining maintain strong connections with family, friends and community.

For those concerned about their risk of developing Alzheimer’s disease, join Prevent AD, Rhode Island’s Alzheimer’s disease Prevention Registry. Prevent AD volunteers will learn about prevention studies for which they may be qualified to participate in, as well as the latest news on brain health. For more information, call (401) 444-0789.

The full text of the Alzheimer’s Association 2014 Facts and Figures can be viewed at http://www.alz.org/downloads/facts_figures_2014.pdf. The full report also appeared in the March 2014 issue of Alzheimer’s & Dementia: the Journal of the Alzheimer’s Association (Volume 10, Issue 2).

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

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

Published in Pawtucket Times on November 1, 2013

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.

National Report Grapples with Impending Alzheimer’s Epidemic

Published in the Pawtucket Times, July 25, 2013

.This 56 page report must not sit on a bureaucrat’s dusty shelf.

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 release a report last week to address a major public health issue, an impending Alzheimer’s disease epidemic on the horizon.

Researchers say that 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 triple, skyrocketing to almost 14 million people.  Simply put, Alzheimer’s disease is now the 6th leading cause of death and 5th among those 65 to 85 years of age.

A Call to Arms

A July 15, 2013, CDC, the federal agency charged with protecting public health and safety through the control and prevention of disease, injury, and disability, and the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, unveiled The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018 at the 2013 Alzheimer’s Association International Conference in Boston.

The released report calls for public health officials to quickly act to stem the growing Alzheimer’s crisis and is a follow-up to the 2007 The Healthy Brain Initiative: a National Public Health Road Map to Maintaining Cognitive Health.

“The public health community is now paying greater attention to the Alzheimer’s epidemic that millions of families have been facing for decades and that is poised to drastically increase,” said Robert Egged, Vice President of Public Policy at the Alzheimer’s Association. “On the heels of the 2012 release of the country’s first-ever National Alzheimer’s Plan, the Alzheimer’s Association and CDC have partnered again to create a tool for public health officials to improve the quality of life for those families and advance cognitive health as a integral component of public health,” says Egged.

Released five years ago, the original Road Map addressed cognitive health and functioning from a public health perspective and provided a framework for the public health community to engage cognitive health, cognitive impairment, and Alzheimer’s disease and other dementias. More than 280 experts in the field contributed to this new Road Map report that outlines specific actions steps that state and local public health officials can take to promote cognitive functioning, address cognitive impairment for individuals living in the community and help meet the needs of caregivers.

While federal agencies play a critical role in leading and funding efforts to address Alzheimer’s disease, state and local health departments organize and provide public health services at the community level.

“The goal of the Healthy Brain Initiative is to enhance understanding of the public health burden of cognitive impairment, help build evidence-based communications and programs, and translate that foundation into effective public health practices in states and communities. This Road Map provides guidance to states, communities, and national partners to plan for and respond to this major public health issue,” said Lynda Anderson, PhD, Director of the Healthy Aging Program at CDC.

A former Assistant Secretary at the U.S. Administration on Aging, Bill Benson, now a managing partner of Silver Spring, Maryland-based, Health Benefits ABC, notes that the cost of providing care to people with Alzheimer’s disease will have a drastic impact on the nation’s economy due to the cost of lost productivity, and the care costs for those no longer able to care from themselves. “This does not include the profound personal impact and consequences to those who suffer from Alzheimer’s and to their loved ones,” he says.

“The scope, cost and the extraordinary burden both to individuals and to society make it a true health crisis,” says Benson, stressing that public health officials need to know more about the disease and those who have it, better ways to diagnosis it.  There must also be a better understanding of the economic impact and programs and services that are proven to ease the burden of those who suffer from it and their caregivers, he adds.

Action Steps for Local Communities to Follow

The Road Map report includes more than 30 action steps that the public health community can take at the federal, state and local levels over the next five years to address cognitive health and cognitive impairment from a public health perspective. The actions are intended as a guide for what state and local public health officials could do – on their own or with other national, state and local partners. Agencies are encouraged to select those actions that best fit state and local needs and customize them to match priorities, capabilities and resources.

As to specifics, the Road Map report calls for improved monitoring and evaluation of persons with dementia including Alzheimer’s disease and younger onset as they relate to employment and employers, and defining the needs of these individuals and their caregivers.  Also, increased support should be given to state and local needs assessments to identify racial/ethnic; lesbian, gay, bisexual, and transgender; socioeconomic; and geographic disparities related to cognitive health and impairment.

Public health officials must educate and empower the nation in confronting the epidemic of Alzheimer’s disease by promoting advance care planning and financial planning to care partners, families, and individuals with dementia in the early stages before function declines.  They can and promote early diagnosis.

The Road Map report urges that sound public health policies be developed and partnerships created to collaborate in the development, implementation, and maintenance of state Alzheimer’s disease plans. It also recommends that state and local government integrate cognitive health and impairment into state and local government plans (e.g. aging, coordinated chronic disease, preparedness, falls, and transportation plans).

Finally, the Road Map report also recommends that strategies be developed to help ensure that state public health departments have expertise in cognitive health and impairment related to research and best practices.  Support must also be provided to continuing education efforts that improve healthcare providers’ ability to recognize early signs of dementia, including Alzheimer’s disease, and to offer counseling to individuals and their care partners.

A Local View

Maureen Maigret, policy consultant for the Senior Agenda Coalition of RI coordinator of the Rhode Island Older Women’s Policy Group, agrees with the assessment of theRoad Map report, especially with the Ocean State having the “highest percent of persons age 85 and over in the 2010 Census and this is the population that is growing fast and most likely to have dementia.”

Maigret notes the economic impact will have significant impact across our economy for the state budget and for individual families. “It is imperative for our public officials to promote programs to identify those with early cognitive problems and implement policies to strengthen community and caregiver supports that will help persons to safely remain in home and community settings as long as possible, she says.

The Rhode Island General Assembly passed legislation this year that requires caregiver assessments in the state Medicaid long term care system.  “It’s a good first step in helping caregivers. But we must do so much more to inform the public about available resources, to adequately fund assistance programs such as RIde, Meals on Wheels and respite services and to promote cognitive screening as part of annual wellness visits funded by Medicare,” she says.

“Having a clear active mind at any age is important but as we get older it can mean the difference between dependence and independent living,” says Executive Director, Donna McGowan, of the Alzheimer’s Association-Rhode Island Chapter. “We are excited that the CDC has partnered again with the Alzheimer’s Association to create a tool for public health officials to improve the quality of life for those families afflicted by the disease,” she says.

For more information on The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018, visit alz.org/publichealth. For more information on Alzheimer’s disease and the Alzheimer’s Association, call 1-800-272-3900 or visit alz.org®.