Reflecting on a Loved One’s Life Time of Achievements

Published in the Woonsocket Call on December 29, 2019

A few weeks ago, my sister Nancy called to give me the bad news that my brother-in-law, Justin Aurbach, was diagnosed with an aggressive and deadly cancer known as glioblastoma, or more commonly referred to as GBM. This 77 year old Dallas-based endodontist who I knew as relatively healthy, a believer in vitamins and physically active most of his adult life, was now house-bound receiving 24 hour a day care by home health caregivers, along with his daughters Stephanie and Allison, and his partner Ruth who were now all part of a revolving schedule of care.

I booked a quick trip to Dallas to sit with him and show my support and concern. It had been a few years since I had been there and I wondered what the conversation might entail, knowing that our 53-year old relationship could cover a lot of ground. Justin and my sister were always collectors of art, and I soon found myself sitting at a kitchen table, surrounded by colorfully carved images of watermelons, where he and I reminisced as the time flew by.

Justin reminded me that we first met in 1967 when he came to pick-up my older sister Mickie, taking her to dine at Campisi’s Restaurant, a local pizza hangout. Even though it took place over five decades ago, he clearly remembered first meeting my mother as she greeted him from the couch, sitting with her thick soled shoes propped up on the ottoman, smoking a cigarette and wearing her trademark leopard print blouse. He recalls her holding Tony, the family’s three-legged Toy Poodle.

A year later, Mickie and Justin would recruit my twin brother, Jim and me to be ushers at their wedding in 1968. Through the ebb and flow of their life together, from raising children, grandchildren and building a successful dental practice, he reflected on their 41 year marriage, noting ‘how it flew by’ before Mickie passed in 2008.

Justin reminded me of the sage advice he gave me before I entered my freshman year at the University of Oklahoma. “Drink in moderation and put studies before chugging pitchers of beer,” he said. It is funny the things you tend to remember, I thought.

As our conversation became more focused on his health, Justin thought that the symptoms of the tumor might first have appeared over five years ago, when he became dizzy while taking a bike ride. Last August, the symptoms returned while riding again, and a Cat Scan would ultimately reveal his tumor.

Turning 60

In 2003, I had the opportunity to interview Justin about turning age 60 for my weekly senior commentary in the Pawtucket Times. He shared the following thoughts about being at the peak of his career professionally, while only five years shy of reaching retirement age.

In my commentary, Justin said, “It’s great [moving into your 60s], however, far too much [cultural] negativity has been directed at this chronological age.”

At that time, my brother-in-law was in relatively good physical shape. While he would acknowledge that he could not run a four-minute mile, he joked that he never could anyway. As he approached his sixth decade, he admitted that he played a little golf like many of his friends, walked and jogged, and even took time to lift weights.

Dr. Justin E. Aurbach, DDS, had accomplished much in his career by the age of 60. As the first endodontist in the Dallas-Fort Worth area, he was the first in the region to perform endodontic microsurgery, when at that time there were only 78 endodontists in the nation performing such surgery. He is past president of the DFW Endodontic Society, The Southwest Society of Endodontics, and the Dallas County Dental Society. He served as general chairman of the Southwest Dental Conference.

Justin believed strongly that he would still be ‘at the top of his professional game, improving with age’, as he proudly boasted. During my interview with him, he said, “not only am I technically better, but my years of life experience have made me wiser in respect to knowing what can and cannot be done in my life.”

The endodontist attributed much of his success to his wife, children and the many supportive family and friends that were part of his large extended family.

By age 60, his philosophy of looking at the “glass half-full rather than half empty” allowed him to cope with life’s difficulties. This life stage was also a time of excitement and learning for him, while he glided into the years he referred to as “best time of your life.”

Getting to the Big “70”

Ten years later, we would speak again about his approaching the age 70 milestone. He reflected on how so much time had passed, which he noted flew by in “the blink of an eye.” During my 2013 interview with him published in my weekly commentary in this paper, he told me that he would “certainly keep forging ahead at a break-neck pace,” promising that new goals would replace those that were accomplished.

He recalled having attended dozens of funerals, said final goodbyes to his wife, father, father-in-law, mother-in-law, along with many close friends and colleagues. Justin noted that “reading the Dallas Morning News obituary page and constantly attending funerals made him aware of the need to accomplish his set goals with the limited time he had left -” but life goes on,” Justin told me. A year after his wife’s death in 2008, the aging widower again found love and began to date Ruth.

Looking ahead into his 70’s, Justin had no plans to retire. Though financially secure, he aspired to maintain a very full practice until his eighty-fifth birthday. He found added fulfillment teaching endodontic residents at Texas AM Baylor School of Dentistry, a job that he hoped would continue into his 70s, while also staying active in the medical group.

Justin has been an avid bike rider for over 30 years, and despite being 70, he would continue to sneak in a ride when possible, even with his busy schedule. He enjoyed the City of Dallas’s fine restaurants, loved to cook for family and friends, and looked forward to a good play or chamber music performance from time to time. His mantra may well be “Live your life to the fullest, don’t put off tomorrow what you can do today.”

Looking Ahead

Justin says, since the diagnosis of his terminal illness, his house has been flooded with family, friends, referring doctors and even former dental students. “I have made a lot of friends and accept that I have impacted people in a very positive way,” he said, as he cites as an upside of his illness.

As we concluded our talk, he says, “Don’t wait to do things. You never know what the future has in store for you,” adding that he learned this lesson from Ruth.
“Simple things in life are your best bet to living a good life,” Justin tells me, stressing that it doesn’t cost a lot of money to enjoy your life.”

Justin acknowledges that he may live another two to six months with the GBM tumor, but remains optimistic, for there are those who have lived for another 14 years. In his remaining time, he hopes to maintain a “quality of life” that allows him to continue to attend musicals and plays, or perhaps even take short trips.

Final Thoughts

As you reach your 60s and into your 70s, research tells us that exercise, eating a healthy diet, developing a strong social network of family and friends, and continuing to learn and seek out new knowledge all become important in enhancing the quality of your life and increasing your longevity in your later years. However, in our twilight years life can become of full of tough challenges and we may face difficult times.

Ultimately, like Justin, reflecting on personal and professional accomplishments can give you the inner resources necessary to meet the challenges in the final stages of your life.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, health care and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

Uncompensated Cost of Caregivers is a Whopping $470 Billion

Published in the Woonsocket Call on November 17, 2019

Approximately 41 million unpaid family caregivers provided an estimated 34 billion hours of care in 2017 — worth a whopping $470 billion — to their parents, spouses, partners, and friends, according to the latest report in AARP’s Valuing the Invaluable series. The 2019 estimated value of family caregiving is based on 41 million caregivers providing an average of 16 hours of care per week, at an average value of $13.81 per hour. Previous AARP Public Policy reports were released in 2006, 2008, 2011 and 2015.

“It’s encouraging to see greater recognition of the emotional, physical and financial struggles that caregivers face,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, in an April 14th statement announcing the release of the 32-page report. “But the demands on family caregivers are not just a family issue and we must continue to push for meaningful support and solutions,” says Reinhard.

Every caregiver, as well as their families, know the value of their efforts,” said AARP Rhode Island State Director Kathleen Connell. “In Rhode Island, the estimated total value of 114 million hours of work by the state’s 136,000 caregivers is $1.8 billion. The aggregate is astounding, making a clear case for supporting this vital commitment made by family and loved ones.”

“These numbers inspire our members who spend many hours at the State House as AARP Rhode Island advocacy volunteers,” Connell added. “They have helped pass key legislation — the CARE Act, paid caregiver leaves and many other key bills — that have given caregivers resources and opportunities to make their task less daunting. Caregivers are truly invaluable,” she says.

Putting a Spotlight on the Nation’s Caregivers

AARP’s report notes that the estimated $470 billion equates to about $1,450 for every person in the United States (325 million people in 2017). Its economic impact is more than all out-of-pocket spending on US health care in 2017 ($366 billion). Uncompensated care provided by caregivers is also three times as much as total Medicaid spending on long-term services (LTSS) and supports ($154 billion in 2016) and even the total spending from all sources of paid LTSS, including post-acute care ($366 billion in 2016).

The AARP researchers say that the estimate of $470 billion in economic value of uncompensated care is consistent with nearly two decades of prior research studies, all of which found (like the current study) that the value of unpaid family care vastly exceeds the value of paid home care.

The AARP report, Valuing the Invaluable: 2019 Update Charting a Path Forward, also explores the growing scope and complexity of caregiving, including an aging population, more family caregivers in the paid workforce, and the increasing amount of medical and nursing tasks entering the home.

According to the AARP report, family care givers, who provide day-to-day supports and services and manage complex care tasks, are becoming more diverse. While most family caregivers are women, about 40 percent are men who are providing more assistance than just driving to doctor’s appointments and grocery stores or paying bills. Like all caregivers, they are assisting a parent, spouse or friend with bathing and dressing, pain management, managing medication, changing dressings, helping with incontinence and even preparing special diets.

While a majority of baby boomers are providing caregiving services, a growing number of younger adults are now shouldering this responsibility, too. Nearly 1 in 4 (24 percent) are millennials (born between 1980 and 1996). Despite their low salaries, the young adults are spending more of their salary on caregiving expenses than other generations. The researchers estimated that this spending in 2016 was about 27 percent of their income.

About 60 percent of family caregivers are juggling a job and providing care, too. This will continue as aging baby boomers choose to remain in the labor force to bring additional income into their household. Workplace benefits for caregivers becomes become even more important as they face economic and financial strain in their later years.

For those employees who choose to leave their job to become a full-time caregiver, they risk both short-and long-term financial difficulties, say the researchers.

Finally, the researcher’s recommendations to better support family caregivers included developing a robust and comprehensive national strategy with the needs of an increasingly diverse caregiver population included; providing financial relief and expanding workplace policies; developing caregiver training programs; and expanding state and federal funding for respite programs.

More Work Needs to Be Done

The AARP report warns that the rising demand for caregivers with the graying of the nation’s population, shrinking families will drastically reduce the supply. In 2010, there were 7.1 potential family caregivers for every person age 80 and over. By 2030, there may be only 4.1 potential caregivers for every person age 80 and over, they say.

Although significant federal and state policy are already in place to assist the nation’s caregivers, more work needs to be done, say the researchers. They call on Congress and state lawmakers to keep pace with the changing demographic, social trends and needs of the family caregiver.

Resources and information on family caregiving, including AARP’s Prepare to Care
Guides, are available at http://www.aarp.org/caregiving.

Caregivers Find it Difficult to Shop at Retail Stores

Published in the Woonsocket Call on September 22, 2019

Survey findings from a recently released national study, by the Washington, DC-based AARP and NORC at the University of Chicago, will send a strong message to America’s businesses.

With the graying of America, retail stores must change the way they do business in order to attract customers who provide unpaid family caregiving to their loved ones.

The study, “Family Caregiver Retail Preferences and Challenges,” and its survey findings were presented at the AARP Executive Summit, The Price of Caring, on September 10 in Washington, D.C. The summit’s mission was to highlight public- and private-sector solutions to support Americans who care for an older or ill loved one.

In-store Shopping is a Struggle

While juggling a multitude of caregiving tasks, caregivers say a lack of accommodations for their frail family members is a problem for shopping at retail stores. The study’s findings reveal that in-store shopping is a struggle for one-third of the nation’s 40 million unpaid family caregivers. Many leave their loved ones at home or choose to shop online, despite strongly preferring the in-store experience.

A whopping 93 percent of caregivers surveyed say they shop for the person they care for. Among these caregivers, most report shopping monthly for groceries (87 percent), basic household items (65 percent), toiletries (61 percent), prescription drugs (58 percent) and other health products (52 percent for persons they regularly care for.

“Americans who take care of loved ones are often strapped for time, and many face logistical challenges doing something as simple as going to the grocery store,” said Nancy LeaMond, AARP executive vice president and chief advocacy & engagement officer, in a September 10th statement announcing the study’s findings. “Retailers can score big with caregivers if they make it easier for them to bring their loved ones along when they shop,” says LeaMond.

The AARP survey findings detail simple but important changes retailers should consider to enhance the shopping experience of caregivers. Businesses can provide dedicated parking spots and ample comfortable reserved seating for older shoppers to rest, wider aisles that easily accommodate both wheelchairs and shopping carts, longer store hours, and train their staff to specifically work with caregivers.

The Pros and Cons of In-Store and On-Line Shopping

The survey findings in the 26-page study reveal that 82 percent of the caregiver respondents prefer to shop in-store because of the ability to touch the products and they don’t have to wait for a product’s delivery or pay for shipping charges. But 84 percent say they shop online for ease and convenience, despite preferring an in-store experience. Forty three percent of the respondents say a major reason they leave their loved one at home when shopping is because the store environment is too difficult for the recipients of their care.

More than 56 percent of the caregiver respondents say that when shopping on behalf of their loved ones they spend at least $50 per month. Forty one percent note they spend more than $250 or more a month when shopping for a loved one.

Businesses Must Listen to the Shopping Needs of Caregivers

We listen to a lot of caregivers and it seems clear that, regardless of the challenge, the help they want most is for somehow to find a convenient, time-efficient and accommodating means of getting what they need, when they need it,” said Rhode Island AARP State Director Kathleen Connell. “In retailing, convenience is a huge competitive advantage these days. But there are aspects of convenience that – for caregivers – go beyond finding what you need on Amazon and having it delivered the next day or two,” says Connell.

“Some caregiver needs are in the ASAP category and they head for brick and mortar retail establishments. Shopping for food and clothes, picking up a prescription or medical supplies, even simple things such as picking up dry cleaning feel like ‘emergencies’ because time is so. Imagine this in the context of being with someone in a walker or wheelchair,” notes Connell.

Connell urges retailers to take this report to heart. “There is an incredible amount of goodwill to be earned if you think about caregivers, as well as those in their care, and give them the consideration that makes their tasks a little easier.”

The AARP survey was conducted by NORC at the University of Chicago and is based on a nationally representative survey of 1,127 Americans who provide unpaid care for an adult age 18 or older. The survey was funded by AARP and used AmeriSpeak®, the probability-based panel of NORC at the University of Chicago. Interviews were conducted between Aug. 1-19, 2019, online and using landlines and cell phones. The overall margin of sampling error is +/- 4.1 percentage points at the 95% confidence level, including the design effect. The margin of sampling error may be higher for subgroups.

To read the full report, visit: http://www.aarp.org/caregivershopping.

For more details about AARP’s Caregiver Shopping study, contact Laura Skufca, AARP Research, Lskufca@aarp.org.

Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

New Report Says Alzheimer’s Disease Is Now Major Public Health Issue

Published in the Woonsocket Call on March 25, 2018

For the second consecutive year, total payments to care for individuals with Alzheimer’s or other dementias will surpass $277 billion, which includes an increase of nearly $20 billion from last year, according to data reported in the Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report recently released last Tuesday.

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system.

“This year’s report illuminates the growing cost and impact of Alzheimer’s on the nation’s health care system, and also points to the growing financial, physical and emotional toll on families facing this disease,” said Keith Fargo, Ph.D., director of scientific programs and outreach for the Alzheimer’s Association, in a statement. “Soaring prevalence, rising mortality rates and lack of an effective treatment all lead to enormous costs to society. Alzheimer’s is a burden that’s only going to get worse. We must continue to attack Alzheimer’s through a multidimensional approach that advances research while also improving support for people with the disease and their caregivers,” he said.

Adds Fargo, “Discoveries in science mean fewer people are dying at an early age from heart disease, cancer and other diseases,” said Fargo. “Similar scientific breakthroughs are needed for Alzheimer’s disease, and will only be achieved by making it a national health care priority and increasing funding for research that can one day lead to early detection, better treatments and ultimately a cure.”

2018 Alzheimer’s Facts and Figures

New findings from the 88-page report on March 20, 2017 reveal the growing burden on 16.3 million caregivers providing 18.4 billion hours of care valued at over $ 232 billion to 5.7 million people with the devastating mental disorder. By 2050, the report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care skyrocketing to more than $1.1 trillion.

Between 2000 and 2015 deaths from health disease nationwide decreased by 11 percent but deaths from Alzheimer’s disease have increased by 123 percent, says the new data in the report, noting that one out of three seniors dies with Alzheimer’s or another dementia. It even kills more than breast cancer and prostate cancer combined. In Rhode Island in 2015, the number of deaths from Alzheimer’s disease was 453, making the devastating brain disorder the 5th leading cause of death in the state.

In 2017, 53,000 Rhode Island caregivers provided an estimated 61 million hours of unpaid physical and emotional care and financial support – a contribution to the nation valued at $768 million dollars. The difficulties associated with providing this level of care are estimated to have resulted in $45 million in additional healthcare costs for Alzheimer’s and other dementia caregivers in 2017.

State Updates Battle Plan Against Alzheimer’s Disease

“The Alzheimer’s Association’s most recent report about Alzheimer’s Disease in Rhode Island illustrates the need to take swift action in updating our State Plan to ensure Rhode Island is prepared to provide the necessary resources to families, caregivers and patients who are struggling with the disease,” says Lt. Governor McKee,

McKee adds that the updated State Plan will be a blueprint for how Rhode Island will continue to address the growing Alzheimer’s crisis. “It will create the infrastructure necessary to build programs and services for the growing number of Rhode Islanders with the disease. The updated Plan will also outline steps the state must take to improve services for people with Alzheimer’s and their families. After the update is complete, my Alzheimer’s Executive Board will seek legislative and regulatory changes to carry out the recommendations of the Plan and ensure that it is more than just a document,” he says.

“One of the many types of caregivers benefiting from AARP’s caregiving advocacy in Rhode Island are family members who care for those with Alzheimer’s,” said AARP Rhode Island State Director Kathleen Connell. “They are among the army of 10 million wives, husbands, sons and daughters nationwide. The majority are women and according to researchers, especially when it comes to dementia and Alzheimer’s care. Approximately 40 percent of those caregivers say they have no other options or choices, and a third say they provide care 24/7.

“The latest report indicates what we already know,” Connell added. “This will continue to be rising challenge in Rhode Island as our population ages. The disease will place more stress on our Medicaid-funded nursing home capacity, which should make this a concern for taxpayers. There is a strong case for increasing research funding so that someday we may reverse the tide.

“Our Web site, http://www.aarp.org, provides abundant resources for these dedicated caregivers. AARP in states across the nation, including Rhode Island, have worked to pass legislation that provides paid respite for caregivers who have jobs as well as caregiving obligations. We have supported the Alzheimer’s Association here in Rhode Island for many years and, last year, a small team of AARP volunteers participated in the Alzheimer’s Walk. Joined by others, they are gearing up for this year’s walk.”

Increased Research Funding Needed Now

Donna McGowan, Alzheimer’s Association, RI Chapter Executive Director, says that the 2018 Alzheimer’s Disease Facts and Figures report should send a very clear message that Alzheimer’s disease is an issue that policy makers cannot ignore. “This is an urgent public health crisis that must be addressed. Early detection and diagnosis of the disease leads to better planning, avoiding preventable hospitalizations, and over all a better quality of life for the patient and the caregiver,” says McGowan.

McGowan warns that the health care system is not ready to handle the increased cost and number of individuals expected to develop Alzheimer’s disease in the coming years. “With a vigorous National Plan in place to address the Alzheimer’s crisis, and annual budget guidance for Congress, it is essential that the federal government continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research,” adds McGowan.

Rhode Island Congressman David Cicilline sees the need for increased funding for direct services for those afflicted with Alzheimer’s disease. He voted for H.R.1625, the omnibus spending bill that increases funding for the National Institute of Health’s Alzheimer’s research by $414 million. And two years ago, Cicilline worked to pass H.R.1559, “The HOPE for Alzheimer’s Act,” which President Obama signed into law to expand Medicare coverage for Alzheimer’s treatment.

If Cicilline succeeds to get the Republican-controlled Congress to have a vote on H.Res.160, his bill to reestablish the House Select Committee on Aging, it will allow House lawmakers to hear expert testimony and make new policy recommendations to improve the delivery of care to those afflicted with Alzheimer’s and to assist caregivers, too.

For details, go to http://www.alz.org/facts.

New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.

New Approach to Support Caregivers Needed

Published in Woonsocket Call on September 18, 2016

Currently 18 million people across the nation provide assistance with activities of daily living, transportation, finances, wound care and giving injections to their aging parents, spouses, family and friends. AARP Rhode Island estimates that 148,000 Rhode Islanders are caregivers. The future is bleak for those requiring caregiving assistance in the near future. According to a recently leased report by The National Academies of Sciences, Engineering, and Medicine (NASEM), the need for family caregivers will drastically increase but demographic shifts reduce the potential pool of caregivers to tap.

Being a Caregiver in America

The 340 page NASEM report (taking 20 months to produce) calls for the retooling of the nation’s health and long-term care delivery system through team based care (using a person and family care model approach) and policy changes to better support family caregivers in the delivery of care to older Americans.

The recommendations detailed in Families Caring for an Aging America, released on September 13, 2016, challenges policy makers “to transform the health care experience for older adults and their family caregivers,” says Nancy Morrow-Howell, PhD, president of the Washington, D.C.-based The Gerontological (GSA) Society of America, the nation’s largest interdisciplinary organization devoted to the field of aging. “The approach requires a multidimensional, interdisciplinary effort that spans diverse settings of care. GSA strongly supports this effort to create a person- and family-centered model for team-based care that recognizes and rewards the role of the family caregiver,” she notes.

Adds Richard Schulz, who chaired NASEM’s Committee on Family Caregiving for Older Adults (consisting of 19 caregiving experts) that oversaw this study and who serves as Distinguished Service Professor of Psychiatry, University of Pittsburgh, “Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens.”

Schultz adds, “Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives – from their health and quality of life to their relationships and economic security. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for caring for its older adult population.”

According to a release, NASEM’s highly anticipated report noted that by 2030, 72.8 million U.S. residents – more than 1 in 5 – will age 65 or older. According to the National Survey of Caregivers, in 2011, 17.7 million people – or approximately 7.7 percent of the total U.S. population aged 20 and older – were caregivers of an older adult because of health problems or functional impairments. This estimate does not include caregivers of nursing home residents.

Furthermore, being a caregiver is not a short-term obligation, says the report, noting that the median number of years of family care for older adults with high needs is around five years. The proportion of older adults who are most likely to need intensive support from caregivers – those in their 80s and beyond – is projected to climb from 27 percent in 2012 to 37 percent by 2050.

A Shrinking Pool of Caregivers

The NASEM’s Family Caregiving Committee says that little policy action has been taken to prepare the nation’s health care and social service delivery systems for this demographic shift. While the need for caregiving is rapidly increasing, the number of the potential family caregivers is shrinking. Current demographic trends – including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses – will decrease the pool of potential caregivers in the near future. Unlike past years, aging baby boomers and seniors will have fewer family members to rely on for their care because they will more likely be unmarried or divorced and living alone, and may be even geographically separated from their children.

The in-depth report found that family caregivers typically provide health and medical care at home, navigate a very complicated and fragmented health care and long-term services and support systems, and serve as surrogate decision makers. Although these individuals play a key role caring for older adults with disabilities and complex health needs, they are oftentimes marginalized or ignored by health care providers. Caregivers may be excluded from treatment decisions and care planning by providers who assume that they will provide a wide range of tasks called for in the older adult’s care plan.

Confirming other research studies, the committee found that caregivers have higher rates of depressive symptoms, anxiety, stress, social isolation, and emotional difficulties. Evidence also suggests that they experience lower physical well-being, elevated levels of stress hormones, higher rates of chronic disease, and impaired preventive health behaviors.

Those taking care of very impaired older adults are at the greatest risk of economic harm, because of the many hours of care and supervision they provide. However, caregiving can provide valuable lessons, helping the caregiver deal with difficult problems and bringing them closer to the recipient of care.

Next Steps

NASEM’s report calls for the next presidential administration to take immediate action to confront the health, economic, and social issues facing family caregivers. Also, the committee urges the secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies, and private-sector organizations, to develop and implement a National Family Caregiver Strategy that recognizes the essential role family caregivers play in the well-being of older adults.

The report recommends that the nation’s health and long-term care systems must support caregiver’s health, values, and social and economic well-being, as well as address the needs of the of a growing caregiver population that is both culturally and ethnically diverse.

Federal programs (such as Medicare, Medicaid and Veterans Affairs) must also develop, test and implement effective mechanisms to ensure that family caregivers are routinely identified, assessed, and supported. Payment reforms can motivate providers to engage caregivers in the delivery of health care, too.

AARP Rhode Island State Director Kathleen Connell agrees with the NASEM’s report’s assessment that the importance of a caregiver’s role in an aging society cannot be overstated. At her organization she clearly sees an increased demand for caregivers and knows all-to-well the impact of a shrinking pool of potential caregivers on those in need.

“It is essential that we take action now to do all we can to remove obstacles and additional financial strain and mitigate physical and mental stress where possible for caregivers,” says Connell. AARP has compiled a wealth of research and information on aging issues that can be accessed on http://www.AARP.org.

Final Thoughts…

On Jan. 1, 2016, a new Rhode Island law took effect that would help Rhode Islanders avoid costly and time-consuming red tape when exercising health care, financial and other legal responsibilities for their out-of-state, elderly loved ones.

Why reinvent the wheel? Rhode Island law makers, the state’s Division on Elderly Affairs and the Lt. Governor’s Long-Term Care Coordinating Council can do more to support the state’s growing caregiver population. With the next session of the Rhode Island General Assembly starting in January 2017, state officials and lawmakers can reach out to other states to learn what state-of-the art caregiver programs can be implemented here.

For a copy of the report go to: nationalacademies.org/caregiving