Tag Archives for caregivers

Calling on Congress to Increase Alzheimer’s Funding

Published in Woonsocket Call on February 21, 2016

Three weeks before President Obama released his Fiscal Year 2017 Budget on February 9,  Senators Susan Collins (R-ME), who chairs the U.S. Select Committee on Aging, and Amy Klobuchar (D-MN) along with seven of their colleagues, called on the Democratic President to increase funding for Alzheimer’s research as part of his last proposed budget request. Senator Sheldon Whitehouse (D-RI), who sits on the Senate Aging Panel, was among the cosigners.

In the bipartisan January 28 correspondence,  the cosigners said, “If nothing is done to change the trajectory of Alzheimer’s, the number of Americans afflicted with the disease is expected to more than triple between 2015 and 2050,” the Senators wrote.  Already our nation’s costliest disease, Alzheimer’s is projected to cost our country more than $1 trillion by 2050… Surely, we can do more for Alzheimer’s given the tremendous human and economic price of this devastating disease.”

Furthermore, cosigners warned that “$2 billion per year in federal funding is needed to meet the goal of preventing or effectively treating Alzheimer’s by 2025.” 

 Aging Groups Express Disappointment

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM), says that the Consolidated Appropriations Act, 2016, (P.L.114-113) provided $936 million in FY 2016 (a $350 million or 59.7% increase over FY 2015) for Alzheimer’s disease research at the National Institute on Aging (NIA), the nation’s leading funder of Alzheimer’s disease research.

Richtman expressed disappointment that Obama’s budget proposal did not recommend funding about the FY 2016 level for Alzheimer’s disease and dementia research, it was essentially flat funded.

“Scientists have estimated that spending at least $2 billion a year on research is necessary to accomplish the national Alzheimer’s plan goal of preventing or effectively treating Alzheimer’s disease by 2025,” says Richtman.

According to NCPSSM’s 2016 Legislative Report, “the number of people suffering from Alzheimer’s disease or a related dementia is expected to skyrocket over the next few decades because many people are living longer and the incidence of Alzheimer’s disease increases with age.”

Richtman says “making a significant investment in funding towards finding a cure and appropriate treatments for persons with Alzheimer’s disease and dementias is key to reducing the massive financial drain this disease will impose on the future of the Medicare program, along with the devastating emotional and financial toll exacted on the millions of Alzheimer’s victims and their family members and caregivers.”

The Alzheimer’s Foundation of America (AFA) also expressed disappointment in the proposed $337 million cut in research funding at NIA, contained in Obama’s 2017 Fiscal year budget proposal. “The Administration has been a champion in the fight against Alzheimer’s disease; however, we are disappointed that, in his final budget, the President is retreating,” said CEO and President Charles J. Fuschillo, Jr., of the Alzheimer’s Foundation of America (AFA). “We were hoping President Obama would take the dramatic step necessary to confront the dementia crisis in this country head-on. We will continue to work with Congressional appropriators to ensure we are on the path to a cure,” says Fuschillo, Jr.

Like NCPSSM, Cicilline, Reed, Whitehouse, and many members of congress, the New York-based AFA urged the Administration to build on the historic 60 percent increase in Alzheimer’s research funding that was included in this year’s budget that provided an additional $1 billion in research funding in the upcoming federal budget.  If done, total federal spending would reach almost $ 2 billion, an amount that Alzheimer’s experts say is necessary to finding a cure or meaningful treatment by 2025 (detailed in the National Plan to Address Alzheimer’s Disease.

According to AFA, currently Alzheimer’s disease is the sixth leading cause of death in the United States, with studies indicating it could actually be as high as the third-leading caused.  But this devastating disorder is the only disease in the top 10 for which there is neither a cure nor impactful treatment.  Furthermore, “even with the Fiscal Year 2016 funding increase, funding for Alzheimer’s lags far behind HIV/AIDS, cancer and heart disease.

On the Home Front

Congressman David N. Cicilline, who successfully led the effort in the House to increase funding for Alzheimer’s research by more than 50% last year, sees a need for increased funding a necessity in the Fiscal Year 2017. “Alzheimer’s disease afflicts 22,000 Rhode Islanders and their families each year,” the Democratic congressman representing Congressional District 1.

With Congress poised to begin hammering out next year’s federal budget, Cicilline plans to continue his efforts in the House to fight for an increase federal funding for a treatment and a cure of the devastating disorder.  He urges for Alzheimer’s disease research remain a major funding priority for policymakers at every level of government.

Senator Jack Reed, serving as a member of the Labor-HHS Appropriations Subcommittee, says, “Last year, we successfully included a $350 million boost in new spending for Alzheimer’s research, a 60% increase over the previous year.  Looking ahead to the coming fiscal year, we still have our work cut out for us in this challenging budgetary climate, but I am pushing to secure additional resources to help prevent, treat, and cure Alzheimer’s, as well as for education and outreach.”

“More and more Americans are being impacted by Alzheimer’s disease and we need a serious national commitment to finding cures and treatments.  That means making strategic investments now that will help save lives and future dollars in the long-term,” notes the Senator.

A Call for Action

Experts tell us an impending Alzheimer’s disease epidemic is now upon us. Federal and state officials are scrambling to gear up for battle, developing national and state plans detailing goals to prevent or treat the devastating disease by 2025.

According to the Rhode Island Chapter of the Alzheimer’s Association, an estimated five million Americans over age 65 are afflicted with Alzheimer’s disease in 2013.  The prevalence may well triple, to over 16 million, if research does not identify ways to prevent or treat the cognitive disorder, says the Rhode Island nonprofit.  By 2050, it’s noted that the estimated 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.

Congress must not act “penny wise and pound foolish” when it ultimately comes to determining the amount of federal dollars that will be poured into Alzheimer’s research in next year’s fiscal budget.  Less dollars or level funding will only increase state and federal government’s cost of care for Alzheimer’s care in every municipality in the nation.  A total of 469 seats in the Congress (34 Senate seats and all 435 House seats) are up for grabs in the upcoming presidential election in November.  Lawmakers must remember that every voter may be personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.  That ultimately becomes a very powerful message to Capitol Hill that it is important to increase the funding to NIA to find the cure.

 

 

Caregivers Must Not Forget Their Own Needs

Published June 8, 2012, Pawtucket Times

           It seems that every where I turn these days, friends, and business colleagues, are being thrust into care giving roles for older family members or spouses.  In today’s hectic world, aging baby boomers and seniors who are now taking on this late-life role can find this new task very demanding and stressful.

            According to the National Alliance for Caregiving and AARP, most aging baby boomers will become informal caregivers at some time during their lives. During any given year, there are more than 65 million Americans (29% of the nation’s population) who provide unpaid care for a chronically ill, disabled, or older family member or relative during any given year.  The caregiver spends an average of 20 hours per week providing care for their loved ones.

            Statistics paint a very detailed picture of the typical family caregiver.  She is a 49-year old, married female who is employed and cares for her 69-year old widowed mother who does not live with her.  Over 66 percent of the nation’s caregivers are women.  More than 37 percent have children or grandchildren 18-years or younger living with them.

The Importance of Taking Care of Yourself

            Connie Goldman, award winning radio producer and reporter whose books have given her readers insights, inspiration, and motivation for personal growth in their mid-life and beyond, sees continuing need for support and services for middle-aged caregivers. 

            Goldman, who authored The Gifts of Caregiving – Stories of Hardship, Hope and Healing, believes the secret of being a successful caregiver is to first take good care of yourself.  Although her book was first published over a decade ago the personal stories that family caregiver have shared continue to offer comfort, insights, and inspiration. Many will benefit from reading the compilation of 30 stories of caregivers who tell their  personal stories of taking care of an ill, disabled or aging loved one.  Goldman notes all of these remarkable people cope with adversity in ways that leave us wondering: “Could I measure up to the challenge?” Most importantly, each of their stories reveals how the hardships of caregiving can be turned into a journey of hope and self-discovery,” she says.

           In her timeless book, Goldman’s interviews include: Dana Reeve (wife of the late actor Christopher Reeve), former First Lady Rosalynn Carter, Pulitzer Prize-winning author Studs Terkel, and others whose lives were forever changed by their care giving experience. There are also personal experiences told by many whose names you won’t recognize, yet their stories offer personal insights that can nurture and nourish   caregivers of any age.

            “Taking on the commitment as a family caregiver opens the door to frustration, irritation, indecision, fear, guilt and stress,” says Goldman, so the caregiver must take care of themselves first. Goldman notes that a mantra she often suggest to post on your mirror, refrigerator, or anywhere else to remind yourself  that you must “Take care of yourself so you can take care of others.”  It is well known that caregivers often lose sleep, don’t eat properly, don’t take breaks, and don’t believe they matter as much as the person who they’re providing care for, she adds.  “Caregivers very often put themselves and their needs last on the list. To be the best caregiver you can be you must care for yourself”.

             According to Goldman, you can be a better, more efficient caregiver if you get enough sleep, eat regular meals, and make a plan to get relief for some period of each day. “I know caregivers are often reluctant to ask a friend to fill in at home while you go to have your hair set, or meet a friend for lunch, or go for a walk in the park. Yet an hour or two away can nourish a caregiver for the next 24 hours,” she says.

             Goldman suggests that caregivers can care for themselves by attending regular support groups, sharing with a friend three things that went right during a day (when everything seems going wrong), or taking a hot bath, reading a magazine, spending a bit of  time in your garden, taking a short nap, or eating a chocolate bar!   It’s often the little things that count in surviving each day and the challenges of being an aging baby boomer caregiver or taking on the caregiver role at any age.  

 Taping into Resources…

             It is difficult for many caregivers navigate the long-term care system to find the most appropriate programs and services to keep their loved ones at home.  According to the Rhode Island Department of Human Services, Division of Elderly Affairs, the National Family Caregivers Association (NFCA) might just provide that crucial information for caregivers.  The Kensington, Maryland-based clearing house (at www.nfcacares.org) offers information on a variety of topics including, stress and family caregiving, caregiver advocacy, care management techniques, support groups, communication with health care professionals, reaching out for help, and other issues.  For more information about the books written by Connie Goldman, go to www.congoldman.org your local bookstore or Amazon.com

            Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries appear in two daily newspapers, The Pawtucket Times and Woonsocket Call.

Better Business Bureau Resource Book Offers Seniors Valuable Tips

Published in Pawtucket Times on March 29, 2004

Everyone has probably heard the old adage…If you don’t pay for it, you won’t appreciate it.”

Maybe this is true in some situations, but this is not the case should you pick up a “free” issue of the Rhode Island Senior Citizens Edition 2004, published by the Better Business Bureau Book (BBB) series.

The 53-page resource book is free and available at local grocery stores and retail sites throughout the state. It was written to address special needs of seniors by using reliable information.

Seniors and caregivers can become savvy shoppers by simply skimming through this annually updated publication when they seek out products and services.

Do you need to modify your home to adapt it to promote greater independence or to prevent falls?  BBB’s 2004 senior edition gives you sound advice when you begin your home fixups.

When shopping around, make sure the contractor you will use is both licensed and bonded.  Always get a written down payment and only make it a small down payment.

Your final payment should be made when the contractor completes the project to your satisfaction. Always contract Rhode Island’s Better Business Bureau (785-1212) for a reference.

While many may consider BBB’s useful recommendations as common-sense advice, sadly some seniors don’t follow the advice and become victims to unscrupulous contractors.

BBB’s 2004 senior edition is jam-packed with useful information, from outlining senior housing choices to tips on choosing a nursing home, medical insurance and long-term care insurance, eye care and dental prosthetics.

Do you need help with managing your assets or spending within your means?  Are you seeking a lawyer to write your will , creating a trust, durable power of attorney or advance directives?  Have you considered pre-planning your funeral. Yes. BBB’s senior 2004 edition gives timely suggestions on hiring financial planners, lawyers, or even choosing a funeral home.

About 30 percent of the nation’s seniors and 50 percent of those over 85 suffer from hearing impairment. Buying a hearing aid can be a frustrating, intimidating experience for many seniors.  BBB’s 2004 senior edition walks seniors through the process of purchasing a hearing aid.

The publication gives an easy-to-understand explanation of the types of hearing losses and where to turn to for treatment – an otologist, audiologist or a hearing aid retailor. Seniors can turn to page 27 to learn the  specifics about hearing aid products, what to expect during the hearing examination, what to look for in contracts and warranties and service and repair issues.

BBB’s 2004 senior edition warns that Rhode Island is now considered a “target state” for scams because of the state’s high percentage of seniors – 16 percent of the Ocean State’s population is over age 55. The resource book warns about seniors about Canadian telemarketing scams, thieves posing as utility workers or inspectors or Nigerian “fund transfer” scams and how to avoid them.

Finally, seniors are taught how to successfully complain via writing effective complaint letters.  Effective complaining begins by sending a letter addressed to the person in charge of the company, not the consumer protection agency. Always allow the company an opportunity to fix the problem.

When corresponding be courteous, describe the problem clearly and be reasonable when requesting your solution, and enclose “copies” of all appropriate documents. Most importantly, always give the company a reasonable amount of time to respond to your complaint. These are not bad suggestions for seniors or caregivers to follow when attempting to resolve a consumer issue.

In his forward to BBB’s 2004 senior edition, A. Michael Marino, BBB’s president, calls on the reader to keep this handy resource book in a very convenient location for easy reference.  You’ll be able to truly appreciate the sound advice and information this free BBB publication offers, despite the old adage about appreciating only the things we pay for.

Call 785-1212 for a copy of BBB’s senior edition, for pickup locations or for detailed information on how seniors can access BBB services.