Tag Archives for Alzheimer’s Disease

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®.

 

Deciphering the Effectiveness of Alzheimer’s Research Findings

Published July 6, 2012, Pawtucket Times 

          Over a decade my mother was afflicted with the devastating medical disorder, Alzheimer’s Disease. Over the years with this affliction her physician would keep our family updated on the effectiveness of pharmaceutical research on medications that could put the breaks on this devastating disorder, one that would ultimately erase her short and long-term memory, making her husband of sixty years, and adult children virtual strangers to her.

            My family like hundreds of thousands of baby boomers and seniors sought out information from local newspapers, senior publications, national magazines, like Time or Newsweek, to unravel the medical mysteries of Alzheimer’s Disease.  Occasionally, I, like many shoppers at the local grocery store would sneak a peek, reading the National Enquirer while waiting in line looking for a little bit more information on new effective treatments for Alzheimer’s Disease.

Unraveling the Mysteries of Alzheimer’s Disease

            Oftentimes it becomes very confusing for caregivers to determine which profiled treatments are promising ones and which ones are not, due to the diversity of opinions in the research community.  Some articles might detail the effectiveness of taking Vitamin E; while others stress the effectiveness of Gingko, noting how it just might improve your memory.  Others might describe studies that indicate that estrogen replacement therapy is not really an effective treatment for Alzheimer’s Disease for some women.  Or some might even issue a warning to the reader to “not eat off of aluminum plates” because some research findings seem to indicate that an accumulation of heavy metals, such as aluminum, in the brain might cause the devastating disorder of Alzheimer’s.

            Years ago I provided the following helpful tips to readers of my column that might just unravel the mysteries of reported research findings in Alzheimer’s research that are reported by the nation’s media.  These tips are just as true eleven years later.

            Always beware of glitzy headlines. Time limitations keep people from reading every word in articles that appear in their daily, weekly or monthly newspapers.  As a result, may readers just choose to quickly scan the headlines for their information.  Don’t judge an article by its cute headline.  The content of an article is much more balanced than the headline that is composed of catchy words, crafted to draw the reader in.

            Look for authoritative commentary.  You can consider an article to be more credible when it provides multiple quotes on the indications of an Alzheimer’s treatment.  Consider the report to have done a good job if there is an authoritative expert commentary of the significance of the study.  Two likely sources might come from staffers employed by either the National Alzheimer’s Association or the National Institute of health, a major federal government agency that fund’s Alzheimer’s research studies.  One might consider the National Alzheimer’s Association point of view to be less biased and a more reliable opinion than those researchers who have ties to a pharmaceutical company that issued the press release.

            Determine if there are disputes in research findings.  Keep in mind that even if a research study is reported there might be those persons who believe that the study is not well designed or has major research flaws.   On the other hand, the study might just be accepted by the scientific community as a solid study.  However, there might still be serious disagreements about how to interpret the results or how to classify it.  Some researchers might consider it a major study while others would not.  A well-researched article will include the quotes of those who oppose the study.

Seeking out Reliable Expert Sources

            Are you still confused by how to cull articles for tips to learn about safe and effective treatments for Alzheimer’s?  Where do we go from here?  Caregivers should view any article written about new Alzheimer’s treatments as informational in nature.  The article can open the door to the nation’s research community and it now becomes your responsibility to do your homework by seeking out more details about what the research findings indicate.

            If the article describes the results of an actual published research study, obtain the scientific journal with the published study at your local library or search for it on the Internet.   When found carefully read it.  If the findings are reported from a presentation at a conference attempt to track down the researchers for more information.  Finally cruise the Internet and check out the official Websites of the Alzheimer’s Association or the National Institute on Aging, to determine if you can locate more information about a reported new treatment.

            Finally, don’t hesitate to call Donna McGowan, Executive Director of the Alzheimer’s Association – Rhode Island Chapter at 401 421-0008 or email, Donna.McGowan@alz.org, to solicit the organization’s comments on research findings reported by the media. Remember Federal agencies, along with national and state Alzheimer’s organizations monitor research studies and their implications for treatment.

              Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries are published in two Rhode Island daily’s The Pawtucket Times and Woonsocket Call.