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.

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.

AARP Rhode Island Web Report Puts Spotlight on Hunger

Published December 28, 2012, Pawtucket Times

Especially during the holiday festivities this week the plight of Rhode Island’s hungry seniors in Providence’s West End Community and throughout the Ocean State, may have remained hidden to many Rhode Islanders, especially at Christmas Dinner, who gathered with families and friends to eat turkey, ham, the fixings, topped off with delicious pastries, and even pies.

But with the funding support of AARP Foundation’s Drive to End Hunger, AARP Rhode Island officially launches its Hungry in the West End investigative web report next week, to ratchet up the public’s awareness that seniors do go hungry every day in this Providence neighborhood and throughout Rhode Island’s 39 Cities and Towns.

Executive Director, Kathleen S. Connell, of AARP Rhode Island, notes that, according the USDA statistics, 67,000 Rhode Island households are considered “food insecure,” which means families do not always have the financial ability to purchase adequate food. “Nearly a quarter (24 percent) of Rhode Island households,” she adds, “receive SNAP (Food Stamp) benefits.

Targeting the West End of Providence

According to Connell, the West End of Providence is the city’s — and the state’s – most economically challenged community. The unemployment rate among its largely Hispanic population exceeds 20 percent, more than double the state average, she says.

Connell adds that hidden in the West End are the “elderly hungry,” whose “food insecurity” is reflected in the number of people who must rely on the federal SNAP program, Meals on Wheels, congregate meals sites at senior centers and neighborhood food pantries to eat.

To get the story out about Senior hunger, former journalist and now AARP Rhode Island’s Director of Communications, John Martin, worked closely with former Providence Journal reporter, Jody McPhillips to investigate and put this issue on the radar screen of the general public as well as the Rhode Island General Assembly and state policy makers.

One disturbing fact came to light during Martin and McPhillips’ interviews, is that resources to relieve hunger are “stretched thin. Federal and state funding to end hunger have not kept pace with the problem. For instance, the Rhode Island General Assembly funding for Meals on Wheels is below funding levels of four years ago, before the nation’s worst recession began.

The Web-based reports, to premiere on Friday, January 4, 2013 at http://www.aarp.org/ri, clearly showcase this daunting domestic issue. What you will see are McPhillips’s eight separate stories, added one per day, many parts of which are supplemented by links to Martin’s videos. They range from extended interviews with McPhillips’s sources, to vignettes shot on various locations, including at the Rhode Island Food Bank, with a Meals on Wheels driver, at food pantries and senior centers, and at the Sodexo family food weekend backpacks program. Also, Martin has put together an overarching video in documentary form that will be posted on the site in segments ranging from four to five minutes each.

Before next week’s premiere you can watch a video preview of this project at – the Web site listed above.

Hunger, One of America’s Biggest Domestic Issues

Connell says that “Hunger and goes hand in hand with a host of serious health consequences – including diabetes, depression, even malnutrition. These are big issues that America faces today. It’s not just a ‘senior problem,’ it’s a societal problem, too. As someone has posted on our Facebook page, senior hunger is simply a disgrace.

“One of our conclusions [noted in the Web-based reports] is that that a lot is being done to help address senior hunger. But federal and state money is not a one-sized fits all solution. For the truly isolated seniors – especially those with disabilities and health issues — well-stocked food pantries may not be a practical resource,” noted Connell.

“We think people who read and watch Hungry in the West End will reach their own conclusions about how we tackle this on a one-to-one basis. It’s a call to action for people to be more aware of senior hunger and to reach out personally to those who might need help,” says Connell.

Connell asks: “Is there someone you can check on? Can you offer someone a ride to the supermarket when you go shopping? Or offer to pick something up? Can you visit a food pantry on their behalf? Perhaps you can ask if they would like some help in signing up for Meals on Wheels or applying for SNAP.”

Connell even knows of a group in one Rhode Island community where “volunteering” means preparing an extra meal each week for someone in need.

For AARP Rhode Island’s John Martin, “I can only say it has been a privilege to become better educated about senior hunger in Rhode Island. Jody and I met scores of people making a difference. But we also saw the great need that is out there. Each step of the way, however, we kept questioning who we were missing. The sad fact is that isolated seniors – by definition – can be all but invisible. In fact, one person said that first contact with some hungry and suffering seniors is a response to a 911 call.

“A lot of talk about hunger is focused on people out of work who are trying to feed their families,” says Martin. But this project brings the issue of senior hunger to the forefront — a problem that may not change much even if the economy makes a healthy rebound, he believes.

Martin states, “It’s not as if a stronger economy means isolated seniors on fixed incomes are going to have more money to spend on utilities, prescription medicines and groceries. And it has always been true that when seniors are forced to choose among those three expenses, groceries likely will be last on the list.”

A Preview….

Aptly put, the problem seems simple but not the solutions, so says McPhillips in her first Web report.

Luz Navarro, a diabetic with part of her left foot amputated, has been on dialysis for four years. The 62-year-old former insurance agent is now housebound, living with her cat. The independently-minded Navarro, can barely stand to cook at the stove and must now rely on Meals on Wheels, delivering her lunch five times a week.

McPhillips illustrates how difficult it is for older person’s to get enough to eat. Navarro, like many of the State’s elderly who are homebound, can’t drive to get to the market, or to a food pantry when money is tight. Nor can she walk to a Senior Center to have lunch and socialize with others.

As McPhillips quipps, “while pundits debate,” Mrs. Navarro needs to eat. While some in Congress denounce the social safety net for creating a culture of dependency, others call for funding to provide food for the needy even with a huge federal deficit.

Senior Senator Jack Reed (D-RI) makes an appearance, calling for the continuation of funding to the state’s SNAP program to feed the growing number of hungry.

Also, Catherine Taylor, director of the state Division of Elderly Affairs, says she sees a future looking darker rather than brighter, for Navarro, and other homebound seniors.

In an era of shrinking budgets, it’s becoming harder to do the things necessary to help older people stay in their homes for as long as possible, admits Taylor.

She warns that federal funding for food programs may be slashed as Congress is forced to rein in the nation’s huge deficit. Food and gas price increases will hit older person’s where it hurts, in their pocket books, predicts Taylor, making it more difficult for them to purchase groceries.

Hopefully, House Speaker Gordon Fox and Senate President M. Teresa Paiva Weed, will get Taylor’s message at the conclusion of McPhillips’ fine investigative piece: “It’s up to us to picture the world we want to age in,” and to work to bring it about.”

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

Tale of Two Caregivers

Published October 5, 2012, Pawtucket Times

           Being a caregiver to an older parent while raising children has now become the new rite of passage for aging baby boomers who, by the millions, are moving into their middle age years and beyond. Often called the sandwich generation for having care responsibilities at both ends of the age spectrum, these individuals become emotionally challenged, physically drained in their attempts to cope and juggle a multitude of tasks.

             According to National Alliance for Caregiving and AARP, more than 65 million persons, 29% of the nation’s population, provide care for a chronically ill, disabled, 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.

 Taking on New Care giving Responsibilities

           Over seven years ago, Catherine Taylor, 51, the State’s Director of the Department of Elderly Affairs, and her husband, Rob, a practicing attorney, found themselves thrust into this new very demanding role with huge responsibilities. Like many others, the couple took on the demanding role of being caregivers of an elderly parent while juggling the intense domestic demands of taking care of four children, whose ages ranged from 3 years old to age 15.

           The Providence couple was now sharing the care of a very independent 83-year-old widow, who at that time resided in her home in Connecticut, one that she had designed. The older woman still continued to practice as an architect until her health began to rapidly steep decline.    

          In 1995, “We moved her back to Rhode Island six months before she died when she became too infirm to live independently in her home,” remembered Catherine.  

        Catherine wanted her mother-in-law to move in with her family, “but she was just too independent for that,” she said.  Her husband’s mother would ultimately choose to live out her final days in an apartment at a senior living facility on Providence’s Eastside, near the Taylor’s home. 

         As is the case with many caregivers who relocated their loved ones to live close by, packing, scheduling the move, and getting the Connecticut house ready for sale became the first chore of being a caregiver, notes Catherine.   

         According to Catherine, becoming a caregiver while working and raising a large family was incredibly hectic. “Many times we had to be in two or three places at one time,” each day.  Catherine adjusted her work schedule to help her mother-in-law with activities of daily living such as dressing, assisting in going to the bathroom, and feeding, take her to the emergency room or stay with her in the hospital, while wanting to be at home cooking her family dinner, and helping her children do their homework.

 Tips on Coping for Caregivers

            The couple juggled their roles as parents, caregivers and employees as best they could.  For instance, “our oldest child would be charged with watching his younger siblings”, Catherine says.  When visiting her mother-in-law to cook and assist her with eating, Catherine brought the youngest along to the senior living facility, and placed him in a portable playpen next to the kitchen table. Catherine, her husband and his sister, would divvy up cooking chores, each one take responsibility for making either breakfast, lunch or dinner.

           Supplemental care, provided by a home health aide, was especially needed when the aging baby boomer couple had to be at work.   

          While taxing for the entire family, care giving did have a positive impact on Catherine’s children.  “It really impressed on them how our family pulled together,” she said, noting “that it made them feel useful because they had specific jobs to perform to keep the family running.”    

           When asked if she got enough respite care for herself, Catherine quipped, “I never get enough!”  She added, “For us being part of a large nuclear family, also having a large extended family, we were able to trade off with each other.  But a lot of people don’t have that option,” she notes.  One of the hardest things about being a primary caregiver is how alone you can feel, Catherine said. “You’re living a different life from most other people.  You watch other families make snap decisions to go to the movies, and just hop in their car and go.  For you to do the same thing, the logistics tend to be like the invasion of Normandy.  You just have to go through so much organizing to have simple pleasures that other people don’t think twice about”.

          “Most family caregivers look like they are doing fine and think they are doing fine, but family, friends and neighbors, and sometimes community agencies, need to check in and give them a break so they care recharge their batteries.”

          Catherine suggests that caregivers maintain their relationships with friends and colleagues as hard as that is to do so they will look in on you, stop by for coffee, bring you dinner and help recharge you.  “This will allow you to keep doing your care giving job with love.”

 Double Duty as a Caregiver

          Sixty-four-year-old, Kathy Heren, Rhode Island’s Long-Term Care Ombudsman, a licensed practical nurse and caregiver, and her husband, John, 63, a chef, slipped into the care giving in the mid-1990s, watching out for two elder family members at the same time, a 72-year- old mother and her 78-year-old uncle.

          Both frail relatives (one had dementia and the other a heart condition) lived independently in their homes located in East Providence and on the Eastside. “Being Irish, they were both very stubborn in accepting assistance,” the aging advocate remembered. While professionally helping others cope with care giving and long-term care issues, Rhode Island’s Ombudsman had to carve out time to personally perform chores for her two frail family members. Chores included shopping, paying bills, and cleaning their houses.   Scheduling and transportation to doctor appointments and med management took additional time away from her very demanding job and family duties.

            When dealing with her Mother’s finances became just too difficult, Kathy, along with her sister, filed for guardianship.  “If you realize that there are some things you just can’t control, then seek outside services or assistance,” she recommended.  

           “Depending on personality of the person you are taking care of you may have to just step away from being a caregiver, if it impacts on your health,” she says.  “It may become the right time to turn to a nursing home or home care services, to take care of your frail family member.”

           “Make sure you turn to respite care if needed because it is always available”, Kathy suggests.  “You need to know when to seek out this assistance and go on a trip to recharge your batteries. When taking care of your loved one, do not forget your own health, family, or nutrition,” she says. .

 Seeking Respite Care Programs

             Rhode Island will receive $250,000 under the federal Lifespan Respite Care Act to support families caring for aging or disabled individuals with special needs, increasing access to short-term, or respite care. This relief offers family members temporary breaks from the daily routine and stress of providing care to loved ones with special needs.

             You can get information about respite care programs and resources available to care givers by calling by calling the Rhode Island Department of Human Services, Division of Elderly Affairs at (401) 462-3000, or you can go to www.dea.ri.gov. TTY users can call (401) 462-0740.

             The Rhode Island State Ombudsman, at the Alliance for Better Long-Term Care, monitors the quality of the Rhode Island’s nursing homes, assisted living facilities, home health agencies and hospice services, and address issues of elder abuse, guardianship, neglect and financial exploitation.  For more information, call  (401)785-3340.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.