AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.

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Report Hones in on Caregiving Costs

Published in Woonsocket Call on November 20, 2016

On the last day of October, a 537 word proclamation issued by President Barack Obama proclaimed November 2016 as National Family Caregiver (NFC) month. In this official decree the president encouraged the nation to pay tribute to 90 million caregivers who work tirelessly care for family members, friends, and even neighbors.

Obama recognizing the nation’s caregivers came about through the lobbying efforts of Caregiver Action Network (the National Family Caregivers Association). The Washington, DC-based group began its efforts to nationally recognize family caregivers in 1994. Three years later, President Clinton signed the first NFC Month Presidential Proclamation and every president since that time has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.

On the heels of Obama’s signed proclamation comes the release of a new AARP report that details the out-of-pocket cost of caregiving. According to researchers, family caregivers spend an average of nearly 20 percent of their income providing care for a family member or other loved one. Along with increased out-of-pocket (OOP) expense, the study also explores other financial and personal strains that family caregivers may experience as result of their caregiving activities.

The Financial Strain of Caregiving

AARP’s 56 page research report “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” noted that caregivers spend an average of $6,954 in OOP costs related to caregiving, with Hispanic/Latino and low-income family caregivers spending an average of 44 percent of their total annual income.

“This study spotlights the financial toll on family caregivers – particularly those with modest incomes,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “Whether helping to pay for services or make home modifications, the costs can be enormous and may put their own economic and retirement security at risk. As a nation, we need to do more to support America’s greatest support system. Passing the bipartisan Credit for Caring Act that provides a federal tax credit of up to $3,000 would give some sorely needed financial relief to eligible family caregivers.”

AARP’s report, released November 14, 2016, determined the amount of money that family caregivers spent over the last year providing help or assistance to a loved one. Certain groups of family caregivers spend disproportionately more in OOP expenses, said the researchers.

AARP’s report, prepared by Chuck Rainville, Laura Skufca and Laura Mehegan, noted that family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average. They are earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.

Family caregivers caring for adults with dementia spend nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758), the AARP report found.

Cultural Diversity and Caregiver Costs

Researchers looked at cultural diversity as it related to OOP expenses of family caregivers. According to their findings, Hispanic/Latino family caregivers spend an average of $9,022 representing 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616 or 34 percent, white family caregivers spend $6,964 or 14 percent, and Asian Americans/Pacific Islanders spend $2,935 or 9 percent.

As expected, long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.

The AARP report notes that increased OOP forces family caregivers to dip into savings, cut back on personal their spending, and they save less for retirement. Some must take out loans to make financial ends meet. Additionally, more than half of family caregivers are cutting back on leisure spending and also reported a report a work-related strain such as having to take unpaid time off.

“Many family caregivers experience a great deal of physical, emotional, and financial strain,” added Susan Reinhard, RN, PhD, Senior Vice President and Director, AARP Public Policy Institute. “This report highlights why AARP supports the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act that would require the development of a national strategy to support family caregivers.”

AARP Rhode Island State Director Kathleen Connell says that AARP’s recently released report verifies what most family caregivers know all too well: Providing for a loved one challenges caregivers in many ways and out-of-pocket expenses certainly is one of them, she says.

“In conversations I’ve had with caregivers over the years, I have found most all consider their efforts a responsibility as well as a labor of love. They rarely complain about cost because, I suspect, they try never to characterize caregiving as a burden,” says Connell..

Connell says, “With passage of the CARE Act and its implementation coming in 2017, Rhode Island is among the states leading the way in caregiver support. We cannot rest. You may be a caregiver. You may know a caregiver. You may someday rely on a caregiver. Any way you look at it, you need to be in the conversation about future needs.”

This study of a nationally representative sample of 1,864 family caregivers was conducted by GfK from July 18–August 28, 2016. All study respondents were currently providing unpaid care to a relative or friend age 18 or older to help them take care of themselves.

The full results of AARP’s caregiver report can be found here: http://www.aarp.org/caregivercosts

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.

The Best of…Experts: Eat Less, Exercise

             Published January 2007, Senior Digest

            As we begin the New Year, many people launch promises through New Year’s resolutions or take this time to reflect on overall better lifestyle improvements.    State aging and health care experts say that if your goal is to live longer, consider squeezing in time to enhance your fitness and health through ongoing exercise and better eating.

           Phillip G. Clark, ScD, Professor and Director Program in Gerontology and Rhode Island Geriatric Education Center, notes that exercise is key to living a healthier life.  “Use it or lose it,” he tells Senior Digest.   If older adults don’t continue to use their capabilities, whether physical or mental, they may eventually lose those abilities. So, it is important for aging baby boomers and seniors to continue to be as active as they can, within the limits of any impairments or health problems they may have.

           Before beginning any program always check with your doctor to be sure it is okay. “Your doctor will advise you on other special conditions or limitations you may need to address in developing your own program,” Dr. Clark says.

Exercise, the Best Pill

          Dr. Clark believes that exercise is the “best pill,” Regular exercise for older adults are linked to all sorts of positive physical and mental health outcomes and advantages, he says.  People just feel better physically and mentally especially if they exercise properly on a regular basis.

          The University of Rhode Island (URI) gerontologist compares physical activity to a savings account.  Dr. Clark says, “If you ‘put’ deposits into your exercise savings on a regular basis, you can ‘draw’ on these when you are sick or have to hospitalized to help minimize the impact of any setback on your functioning.”  

          To exercise, costly weight machines and bikes are not necessary, Clark says.  “Keep it simple,” Dr. Clark recommends.  “For many older adults, just walking regularly can have a number of positive benefits. In the winter when the weather is bad, some folks walk around inside their local senior housing building or at the mall,” he says.

             Deb Riebe, PhD., a Professor in URI’s Department to Kinesiology, says that research has found resistance training is another viable option for aging baby boomers and seniors to consider staying fit.  .

 Consider Resistance Training and Balance Exercises

             The URI exercise physiologist notes that muscle strength peaks at age 30 for most people.  After age 50, there is a real decline in muscle strength.  By your 60s or 70s, if you don’t exercise or participate in a resistance training program it will become more difficult to perform simple activities of daily living, like carrying the vacuum cleaner or groceries, says Riebe.

             Strengthening your muscles can be done simply by lifting small hand weights that can purchased in local stores, adds Riebe, noting that you can use your own body weight to strengthen your muscles in your legs by sitting in your dining room and than standing up.  Perform this simple resistance training exercise 10 times.

             “Balance exercises are also very good to prevent a person from falling.  “A good example of a balance exercise is to stand up on one leg using a chair for support,” she says.  

             Don’t use lack of time as a reason to not exercise, warns Riebe.  “Fit 30 or 40 minutes of exercise into your daily routine.  But for those who chose not to you can always park your car far away from a store and walk a little longer distance.  Or you do a few exercises during a television commercial, “combining leisure with a quick work out,” she says.

              Even when socializing with friends or family, Riebe recommends going out and taking a walk around the neighborhood.  “Everyone will benefit,” she says… 

               Anne Marie Connolly, MS, Director of Rhode Island’s Get Fit Rhode Island, Program, oversees Governor Donald Carcieri’s worksite wellness initiative for state employees.  Programs like Rhode Island’s are being launched nationwide by the mandate of state health commissioners and insurance companies attempting to reel in spiraling health care costs. 

               To improve health behavior, brochures, on site lectures (controlling stress and high blood pressure) and behavior change classes (physical exercise and smoking cessation) are aimed at the 20,000 state workers, whose average age is 47 years old.

 Good Nutrition Important, Too

              Connolly, a professor and research associate at URI’s Kinesiology Department stresses the importance that nutrition plays in maintaining one’s good health.  “Research tells us that people should eat smaller portions, increase their fruit and vegetable and decrease fat, high calorie foods and sweets from their diet,” she recommends.

              For persons with high blood pressure, heart disease or diabetes, consider asking your physician for a consult to see a nutritionist.  Connolly notes that this visit is covered by most of health insurance companies.  “A change in your diet can make significant improvements in many chronic conditions.” 

              Connolly observes that some people don’t buy vegetables and fruits because of cost.  “Look around for supermarkets that offer smaller packaging or portions of vegetables and fruits. Salad and fruit bars enable a person to buy to portion or quantity they need,”: she says.  Even in senior housing, you can work with others to buy cheaply.  Split a head of lettuce with a neighbor. Create a schedule to rotate the purchasing of fruits and vegetables, too.   

              As to exercise, Connolly suggests people start off slowly, more important find an exercise that you will like to do.  As a consultant to Club Med, she came to believe that exercise should be fun and not a chore.  “Look back and see what you did when you were younger,” Connolly adds.  “One woman who took tap dancing in her younger years picked it up again.  It does not have to have to be the same intensity as when you were younger.”   

              For persons with arthritis, try going to a local senior center or YMCA and enroll in exercise programs specifically designed for that chronic condition.  “Water exercise is extremely wonderful for people with arthritis,” she says.

               Connolly notes that some Medicare providers even give special discounts for senior citizens who join health care club chains, costing the older person just $10.00 per month.  Check out your Medicare health care plan’s benefits to see if you are eligible to participate.

              Experts agree that the exercise benefits both young and old. “What is remarkable about the human body, people of all ages respond to physical exercise in the same way,” Connolly says.  .

               Herb Weiss is a Pawtucket-based writer whose articles on health, medical and aging issue.  This article was published in January 2007 in Senior Digest. He can be reached at hweissri@aol.com.