Family Caregivers Face Financial Burdens, Isolation and Burnout

By Dr. Kathy Lee, University of Texas at Arlington

Millions of Americans have become informal family caregivers: people who provide family members or friends with unpaid assistance in accomplishing daily tasks such as bathing, eating, transportation and managing medications.

Driven in part by a preference for home-based care rather than long-term care options such as assisted living facilities, and the limited availability and high cost of formal care services, family caregivers play a pivotal role in the safety and well-being of their loved ones.

Approximately 34.2 million people in the United States provide unpaid assistance to adults age 50 or above, according to the Family Caregiver Alliance. Among them, about 15.7 million adult family caregivers care for someone with dementia.

Help celebrate National Caregivers Day (Feb. 16) by thanking someone who cares for a disabled loved one.

Challenging Situations

I am a licensed clinical social worker and an assistant professor of social work studying disparities in health and health care systems. I focus on underrepresented populations in the field of aging.

In my research focusing on East Asian family caregivers for people with Alzheimer’s and related dementia, I discovered that Chinese American and Korean American caregivers often encounter challenging situations. These include discrimination from health care facilities or providers, feelings of loneliness and financial issues. Some of these caregivers even find themselves having to retire early because they struggle to balance both work and caregiving responsibilities.

My findings join a growing body of research showing that family caregivers commonly encounter five specific challenges: financial burdens, limited use of home- and community-based services, difficulties accessing resources, a lack of knowledge about existing educational programs, and physical and emotional challenges, such as feelings of helplessness and caregiver burnout.

However, researchers are also finding that family caregivers feel more capable of managing these challenges when they can tap into formal services that offer practical guidance and insights for their situations, as well as assistance with some unique challenges involved with family caregiving.

Most Caregivers Are Women

More than 6 in 10 family caregivers are women.

Society has always expected women to take on caregiving responsibilities. Women also usually earn less money or rely on other family members for financial support. This is because equal pay in the workplace has been slow to happen, and women often take on roles like becoming the primary caregiver for their own children as well as their aging relatives, which can drastically affect their earnings.

While nearly half of care recipients live in their own homes, 1 in 3 live with their caregivers.

Sometimes termed “resident caregivers,” these individuals are less likely to turn to others outside the family for caregiving support, often because they feel that it’s important to keep caregiving within the family. These caregivers are typically older, retired or unemployed and have lower income than caregivers who live separately.

According to a 2020 report from the AARP Public Policy Institute, about 1 in 3 family caregivers provide more than 21 hours of care a week to a loved one.

Support Programs for Caregivers

Caregiving often creates financial burdens because it makes it harder to hold a full-time or part-time job, or to return to work after taking time off, particularly for spouses who are caregivers.

Often, community-based organizations such as nonprofits that serve older adults offer a variety of in-home services and educational programs. These can help family caregivers manage or reduce the physical and emotional strains of their responsibilities. However, these demands also can make it difficult for some caregivers to even learn that these resources exist, or take advantage of them, particularly as the care recipient’s condition progresses.

These challenges worsened at the height of the COVID-19 pandemic. Many support programs were canceled, and it was hard to access health care, which made things even more stressful and tiring for caregivers.

Research shows that those who are new to family caregiving often take care of their loved ones without any formal support initially. As a result, they may face increased emotional burdens. And caregivers age 70 and above face particular challenges, since they may be navigating their own health issues at the same time. These individuals are less likely to receive informal support, which can lead to social isolation and burnout. 

There are numerous programs and services available for family caregivers and their loved ones, whether they reside at home or in a residential facility. These resources include government health and disability programs, legal assistance and disease-specific organizations, some of which are specific to certain states.

In addition, research has found that providing appropriate education and training to people in the early stages of caregiving enables them to better balance their own health and well-being with successfully fulfilling their responsibilities. Many community-based organizations, such as local nonprofits focused on aging, as well as government programs or senior centers, may offer case management services for older adults, which can be beneficial for learning about existing resources and services.

For family caregivers of people with dementia, formal support services are particularly crucial to their ability to cope and navigate the challenges they face.

Formal support may also be helpful in finding affordable home-based and community resources that can help compensate for a lack of informal support. These include home health services funded by Medicare and Medicaid-funded providers of medical and nonmedical services, including transportation.

Medicaid, which targets low-income Americans, seniors, people with disabilities and a few select other groups, has certain income requirements. Determine the eligibility requirements first to find out whether your loved one qualifies for Medicaid.

The services and support covered by Medicaid may vary based on a number of factors, such as timing of care, the specific needs of caregivers and their loved ones, the care plan in place for the loved one and the location or state in which the caregiver and their loved one reside.

Each state also has its own Medicaid program with unique rules, regulations and eligibility criteria. This can result in variations in the types of services covered, the extent of coverage and the specific requirements for accessing Medicaid-funded support.

If so, contact your state’s Medicaid office to get more information about self-directed services and whether you can become a paid family caregiver.

Medicare may help pay for certain home health services if an older adult needs skilled services part time and is considered homebound.

This assistance can alleviate some of the caregiving responsibilities and financial burdens on the family caregiver, allowing them to focus on providing care and support to their loved ones without worrying about the cost of essential medical services.

Peer-to-peer support is also crucial. Family caregivers who join support groups tend to manage their stress more effectively and experience an overall better quality of life.

Kathy Lee, PhD, is an Assistant Professor of Gerontological Social Work at University of Texas at Arlington. Her primary focus lies in exploring innovative and non-pharmacological interventions for individuals living with Alzheimer's disease and related dementias, as well as providing support for their family caregivers.

This article originally appeared in The Conversation  and is republished with permission.

Medicare May Cover Training for Family Caregivers

By Judith Graham, KFF Health News

Even with extensive caregiving experience, Patti LaFleur was unprepared for the crisis that hit in April 2021, when her mother, Linda LaTurner, fell out of a chair and broke her hip.

LaTurner, 71, had been diagnosed with early-onset dementia seven years before. For two years, she’d been living with LaFleur, who managed insulin injections for her mother’s Type 1 diabetes, helped her shower and dress, dealt with her incontinence, and made sure she was eating well.

In the hospital after her mother’s hip replacement, LaFleur was told her mother would never walk again. When LaTurner came home, two emergency medical technicians brought her on a stretcher into the living room, put her on the bed LaFleur had set up, and wished LaFleur well.

That was the extent of help LaFleur received upon her mother’s discharge.

She didn’t know how to change her mother’s diapers or dress her since at that point LaTurner could barely move. She didn’t know how to turn her mother, who was spending all day in bed, to avoid bedsores.

Even after an occupational therapist visited several days later, LaFleur continued to face caretaking tasks she wasn’t sure how to handle.

“It’s already extremely challenging to be a caregiver for someone living with dementia. The lack of training in how to care for my mother just made an impossible job even more impossible,” said LaFleur, who lives in Auburn, Washington, a Seattle suburb. Her mother passed away in March 2022.

LINDA AND PATTI LAFLEUR

A new proposal from the Centers for Medicare & Medicaid Services addresses this often-lamented failure to support family, friends, and neighbors who care for frail, ill, and disabled older adults. For the first time, it would authorize Medicare payments to health care professionals to train informal caregivers who manage medications, assist loved ones with activities such as toileting and dressing, and oversee the use of medical equipment.

The proposal, which covers both individual and group training, is a long-overdue recognition of the role informal caregivers — also known as family caregivers — play in protecting the health and well-being of older adults. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a much-cited report.

“We know from our research that nearly 6 in 10 family caregivers assist with medical and nursing tasks such as injections, tube feedings, and changing catheters,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. But fewer than 30% of caregivers have conversations with health professionals about how to help loved ones, he said.

Even fewer caregivers for older adults — only 7% — report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.

Nancy LeaMond, chief advocacy and engagement officer for AARP, experienced this gap firsthand when she spent six years at home caring for her husband, who had amyotrophic lateral sclerosis, a neurological condition also known as Lou Gehrig’s disease. Although she hired health aides, they weren’t certified to operate the feeding tube her husband needed at the end of his life and couldn’t show LeaMond how to use it. Instead, she and her sons turned to the internet and trained themselves by watching videos.

“Until very recently, there’s been very little attention to the role of family caregivers and the need to support caregivers so they can be an effective part of the health delivery system,” she told me.

Training Coverage Could Begin Next Year

Several details of CMS’ proposal have yet to be finalized. Notably, CMS has asked for public comments on who should be considered a family caregiver for the purposes of training and how often training should be delivered.

If you’d like to let CMS know what you think about its caregiving training proposal, you can comment on the CMS site until 5 p.m. ET on Sept. 11. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.

Advocates said they favor a broad definition of caregiver. Since often several people perform these tasks, training should be available to more than one person, Resendez suggested. And since people are sometimes reimbursed by family members for their assistance, being unpaid shouldn’t be a requirement, suggested Anne Tumlinson, founder and chief executive officer of ATI Advisory, a consulting firm in aging and disability policy.

As for the frequency of training, a one-size-fits-all approach isn’t appropriate given the varied needs of older adults and the varied skills of people who assist them, said Sharmila Sandhu, vice president of regulatory affairs at the American Occupational Therapy Association.

Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur, said Kim Karr, who manages payment policy for AOTA.

When possible, training should be delivered in a person’s home rather than at a health care institution, suggested Donna Benton, director of the University of Southern California’s Family Caregiver Support Center and the Los Angeles Caregiver Resource Center. All too often, recommendations that caregivers get from health professionals aren’t easy to implement at home and need to be adjusted, she noted.

Nancy Gross, 72, of Mendham, New Jersey, experienced this when her husband, Jim Kotcho, 77, received a stem cell transplant for leukemia in May 2015.

Once Kotcho came home, Gross was responsible for flushing the port that had been implanted in his chest, administering medications through that site, and making sure all the equipment she was using was sterile.

Although a visiting nurse came out and offered education, it wasn’t adequate for the challenges Gross confronted.

“I’m not prone to crying, but when you think your loved one’s life is in your hands and you don’t know what to do, that’s unbelievably stressful,” she told me.

NANCY AND JIM KOTCHO

For her part, Cheryl Brown, 79, of San Bernardino, California — a caregiver for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002 — is skeptical about paying professionals for training. At the time of his diagnosis, doctors gave Hardy five years, at most, to live. But he didn’t accept that prognosis and ended up defying expectations.

HARDY AND CHERYL BROWN

Today, Hardy’s mind is fully intact, and he can move his hands and his arms but not the rest of his body. Looking after him is a full-time job for Cheryl, who is also chair of the executive committee of California’s Commission on Aging and a former member of the California State Assembly.

She said hiring paid help isn’t an option, given the expense. And that’s what irritates Cheryl about Medicare’s training proposal.

“What I need is someone who can come into my home and help me,” she told me. “I don’t see how someone like me, who’s been doing this a very long time, would benefit from this. We caregivers do all the work, and the professionals get the money? That makes no sense to me.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Survey Finds Over Half of MS Patients Abused by Caregivers

By Pat Anson, PNN Editor

People with multiple sclerosis already have enough problems living with a progressive disease and sky-high medical bills. But now there’s word that many of them are being abused by their own caregivers.   

Researchers at the University of California, Riverside surveyed 206 patients with advanced MS and found that over half of them were being abused in some way by an unpaid caregiver who was often a member of their own family. The mistreatment ranged from psychological (44%) and financial abuse (25%) to neglect (16.5%) and physical abuse (11%). Over 8 percent of patients said they were abused sexually.   

"We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is," said Elizabeth Morrison-Banks, MD, a health sciences clinical professor at the UC Riverside School of Medicine, who led the study. "The findings of this study represent a collective cry for help from so many families affected by multiple sclerosis across the United States."

MS is a chronic and disabling autoimmune disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision and fatigue.

"Some people live with MS for many years but with milder symptoms, and they may remain completely self-sufficient and never require a caregiver,” Morrison-Banks explained. “Others are less fortunate and develop neurological disability that can make them vulnerable to abuse and neglect if they are unable to move around independently, take care of their own finances, or get away from the situation when family conflict escalates. These problems are compounded if the person with MS and family lack financial resources."

A recent study found over 75% of American adults with MS face financial hardship that has forced them to cut spending on food, clothing and housing. Many have gone into debt or filed for bankruptcy, and over a third have delayed or stopped filling prescriptions because they can’t afford them. The average cost of disease-modifying MS drugs is about $76,000 a year.

For MS patients who are struggling financially, hiring a professional caregiver is not an option, so many have to rely on family caregivers.

"Some family caregivers are also working full time, caring for children or other family members, and sometimes dealing with health issues of their own," explained Morrison-Banks. "I want to emphasize that the majority of family caregivers do not mistreat those they care for, even in situations that can be very challenging. Nonetheless, it is important to recognize the risk factors for mistreatment of people with disabilities, and do what we can to identify, mitigate, and prevent abuse and neglect."

Other risk factors for mistreatment include MS patients with higher levels of cognitive impairment, caregivers having a mental health problem, alcohol use by the caregiver or patient, and low levels of social support within the family.

"Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges," Morrison-Banks said. "Many families take these challenges in stride, but others end up in situations of abuse and/or neglect."

The survey findings have been published in the journal Multiple Sclerosis and Related Disorders. The research paper is believed to be the first to document the nature and extent of caregiver mistreatment of MS patients in the United States.

The survey did not include patients who had paid caregivers or trained clinicians. A study of paid caregivers is an important next step for the research team. The National Multiple Sclerosis Society funded the UC Riverside study.

The Reasons Caregivers are Heroes and Saints

By Lynn Webster, MD, Guest Columnist

Some religions call their holiest people saints. In secular speak, a saint is a person who is pure, honest, and beyond reproach, and who mostly devotes their life to benefit others. In our more common vernacular, we use the word “heroes” to describe those who sacrifice themselves for the good of others.

I have decided that my grandfather was either a saint or a hero. That epiphany came to me recently, long after he passed.

My grandmother had multiple sclerosis. She was in constant pain. Sometimes, her pain was severe enough that she would scream that she wished to die. Grandma could not move from one position to another while she was sitting in a chair without assistance.

From the time I remember, she sat frozen with her knees at a right angle to her hips. Her 90-pound frame – which looked like a skeleton – had to be carried from the living room chair to the toilet to the kitchen table to the bed.

Then, when she was in bed, she had to lie on her side. That was because her legs had developed permanent contractures, preventing her from resting in any other position.

During the eighteen years of my childhood and youth, my grandfather rarely left my grandmother’s side except to work in the fields (we lived on a farm). I never recall my grandfather speaking negatively to her or expressing anger at her dependence. Nor, in my memory, did he ever ask anyone else in the family to help care for her.

roy webster

Caregivers Today

Today, we would call my grandfather a “caregiver,” but that sounds inadequate to me. That level of generosity requires a higher level of attribution: saint or hero. Take your pick.

People with acute pain receive flowers, calls, and visits. That pain, everyone knows, will eventually pass. The inconvenience, too, will end.

But when the pain becomes chronic, those loving tributes and the connections soon fade. That leaves the person with pain isolated. Family and friends drift away because their own schedules make demands or because they don’t know how to make a meaningful contribution.

The caregiver often shares this isolation. It is the daily responsibility that separates the caregiver from others who care about the ill person. The others may sincerely care, but they are not in the foxhole.

Who is a caregiver?

The caregiver is most often an adult child, parent, or spouse. They face innumerable challenges. They deprive themselves of a normal schedule. They forgo pleasures and delegate other responsibilities so they can be there for the one in need. They do this out of love, a sense of duty, or both.

The role of giving care to a person with chronic pain is not a sprint but a marathon. People who have chronic pain may live for years, and so goes the role of the caregiver.

Responsibilities are never-ending. The duties include nursing, banking, cooking, housecleaning, bill paying, and all other activities required to exist in society.

Every day in my practice, as I saw patients with chronic pain, I would also see caregivers. I was always in awe of their spirit and generosity. They, along with my grandfather, are heroes in our society.

We can call them heroes, or we can refer to them as saints. I am not sure I can tell the difference between the two. To me, my grandfather was both.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Changes in Family Dynamics

By Barby Ingle, Columnist

Chronic pain can be a lifelong situation that has a significant impact not only on the patient, but on family and friends as well. The condition may affect every aspect of the patient's life in varying degrees, including professional, social, and daily living activities. Everyone may have to make adjustments.

After health, patients are usually hit hardest by the financial aspects of the chronic disorder. Frequently, a leave of absence or early retirement from work is needed due to the inability to perform work-related tasks. Financial difficulties are acerbated by frequent visits to healthcare providers, medical-related expenses and unemployment.

To help reduce stress for everyone, it may be smart for the patient and their family to meet with a financial planner or insurance agent and devise a budget for future expenses.

With less money and mobility, there’s a tendency to give up favorite activities like hiking, sports, traveling, and participating in family events. Exercise becomes more difficult and everyday activities such as driving and shopping may need to be modified or given up.

Despite a wide range of treatment options available, a patient with chronic pain may not seek help and dismiss efforts by others.

Some reasons for this include fears of:

• Addiction to medications
• Lack of insurance coverage
• Not understanding insurance coverage
• Belief that nothing can help them
• Recurring pain will be worse
• Being seen as a "complainer"
• Side effects from treatments
• Tolerance to medications

It is important to discuss these concerns with family members, friends, physicians, or support service professionals (psychologist, social worker, etc.) in order to take advantage of options that are available and may actually lead to pain relief and improvement in the overall quality of life.

Planning is a key component to keeping stress levels down and a great way for family and friends to learn how they can help. Having the patient map out a plan of action for daily routines and responsibilities allows everyone to know when and where their help is needed and minimizes unexpected mishaps. Responsibilities that may need to be addressed include carpools, housework, cooking, holiday activities, laundry, leisure activities, jobs, pet care, planning meals, self-care, and shopping.

Pain patients should be encouraged to stay active, join a support group or seek psychological counseling if appropriate. Some patients find benefit in getting involved in volunteer work, which allows them to set their own hours and to feel they can contribute to others instead of just focusing on their own condition. Patients also be able counsel others with chronic pain.

Caregivers and friends can encourage the patient to do well and get treatments they are comfortable with. Find the balance between encouragement and pressure so the patient knows you love them and that no matter what they choose you will accept it.                                             

It can be difficult (or impossible) to imagine that someone can be in constant severe pain.  It's normal if you have not lived through it yourself. For a caregiver, it may be hard to stand by and accept that your loved one’s pain cannot be fixed or cured (although it may be eased). 

It may also be hard to accept that you cannot make it better. If you are in a close relationship with someone in chronic pain, you are likely to develop a variety of negative feelings like anger or resentment. This is a normal part of the process for both you and the loved one in pain. You are both victims of the pain problem.

Learn how to set the expectation as soon as you can as to what your needs are as a patient or caregiver, what progression the chronic illness is expected to take, what treatment options are available, and the best ways to communicate with each other what will make life easier for the patient, family and caregivers.

Turning to family and friends as caregivers and support outlets is important for everyone to have better daily living.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation.

More information about Barby can be found by clicking here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.