Caregivers, Disabilities, health care, Mental Health, Patient Empowerment, Patient Protection and Affordable Care Act, Public Policy
by Cynthia Marcotte Stamer

Caring For The Caregivers: How To Help

Providing meaningful support of caregivers is a growing, challenging and essential urgent need for the millions of Americans acting as caregivers elderly, disabled, injured or ill family members or friends.

Caregiving is surprisingly common.  More than 51 million Americans or 31% percent of the adult population age 20 to 75 provide informal care to a family member or friend who is ill or disabled.

These caregivers are the lifelines of the people they care for and the predominant and growing long-term care system in the United States.  They are a lifeline for the people they support and our long-term care system.  A study by AARP reveals that at 350 billion dollars, the economic value of non-compensated caregiving exceeds 2006 Exxon Mobile profits.

The many hats the wear includes the traditional family care giving roles of  companion, personal shopper, financial manager, chauffeur, housekeeper, cook, personal care assistant, advocate, counselor and emotional support provider.  Along side these roles, the shift in health care delivery model to outpatient, home-based care means caregivers-most of which have little or no medical background-increasingly find themselves responsible for a host of medical procedures from medication administration to a host of other medical care activities once considered the province of nurses or other licensed health care providers.

While often undertaken out of love, often unavoidable and often rewarding, caregivers often face many challenges. It comes as no surprise that acting as a caregiver can cause emotional and physical stress.

While the caregiving role can be enormously rewarding, it also means a lot of sacrifice.  It may start with just a few hours a week.  Usually the need expands and with each increase, caregivers give up more of their personal lives.   The average family caregiver provides nearly 18 to 20 hours of care a week in addition to holding down a job and managing a family. Second Opinion TV Caregiver Burnout. The added costs of caring for their family members tends to create added economic strain.  When the caregiver also is a breadwinner, the caregiver also tends to suffer adverse employment consequences. Studies have shown that caregivers of the chronically ill tend to suffer significant income losses and many are forced to switch jobs.

As individuals providing long-term care for a loved one with illness try to do more than they are able to do, tend to develop “caregiver burnout.”  They become  more vulnerable to sickness, anxiety, medical problems and depression.  The resulting  physical, emotional and mental exhaustion and leaves the caregiver vulnerable to illness and can lead to cardiovascular disease, hypertension, stroke, and a compromised immune system.

Caregiver burnout symptoms are similar to those for anxiety and depression and include:

  • Sleep disturbances and fatigue
  • Lost interest in once-pleasurable things
  • Changes in appetite, weight, or both
  • Getting sick more often
  • Withdrawal from social contacts
  • Persistent feelings of worry, hopelessness and sadness
  • Irritability
  • Low self-esteem
  • Overreacting to minor issues
  • Decreased productivity
  • Alcohol or drug abuse

Always stressful and demanding,  the number of caregivers and their burden just keeps growing.  While Americans might thing that the burgeoning baby boom generation would have sufficient political pull to demand government address some of these challenges, so far government action seems to be adding to, rather than improving the crisis.  The cost-driven push by Medicare and other payers to force patients out of hospitals, skilled nursing facilities into home care environments coupled with the sharp rise in home care costs, economic downturns, the dispersion of the family, the activity-charged, over busy and over-extended lives of American families generally and the longer and more functional, while disabled life span of aging baby boomers, and other chronically aged, ill or disabled individuals are just a few of the drivers that complicate these challenges.

As a result, American families acting as caregivers and the families and communities must recognize the need to help caregivers care not only for their loved ones but also for themselves.

Caregivers and those around them  should keep an eye out for caregiver burnout and take appropriate steps to prevent or address it.  The  Caregiver Self-Assessment Questionnaire (PDF)  may be a useful assessment tool to help monitor for caregiver burnout.  However, the goal is to prevent or minimize it by taking appropriate preventive action when possible.  While no panacea, some steps for helping caregivers cope with their responsibility include:

  • Caregivers should ask for and accept help.  Meanwhile, friends and family need to offer help with the anticipation that the caregiver that needs it the most is the one most likely to decline or resist it.
  • Friends and family need to offer and provide, and caregivers need to seek social support.  Family and friends can help by touching base regularly, providing respite care to allow the caregiver a break to go out for a couple of hours, or visit.
  • Caregivers and their support network need to develop a realistic understanding of what the patient needs and the caregiver realistically can provide.  Rather than the caregiver feeling guilty about their own limits or family or friends commenting on what the caregiver isn’t or cannot do, the parties should work together to look for and to coordinate resources to help fill the gaps.
  • Family, friends and others in the community surrounding patients and their caregivers need to keep in mind that what is needed is HELP, not commentary.  Avoid the tendency of talking to the caregiver about what the caregiver needs to do or criticizing what isn’t getting done and focus instead on what actions you can do to help out.   Offer to sit with the patient, run errands, or do other tasks that ease the burden of the caregiver and help look for and obtain other resources.
  • Look and seek help where available.
  • Remember, caregiving typically is a long-term role.  Family and friends need to avoid falling into  the out-of-sight, out-of-mind syndrome.  Stay in the game for the long haul as caregiver’s burnout and ite associated challenges tend to get more significant as time passes.

The resources caregivers need and finding them can be a challenge and tend to vary by patient and caregiver situation, place, financial situation, and a host of other factors.  The following is a starting list of some resources, which Project COPE invites the reader to supplement by sharing their additions through postings in the PROJECT COPE LinkedIn Group:

  • Local assisted living, nursing home and other care providers
  • Employee Assistance Programs (EAPs) health and disability plans and insurers
  • Employers
  • Family, friends, church and other social networks
  • Health care providers
  • Administration on Aging (AOA)
  • AARP Caring for Those You Care About free online seminars on planning for and managing caregiving and other resources
  • AMA (Public Health) Caregiver Self-Assessment Tool to help caregivers determine how they are coping with the challenges and stresses of giving care to a loved one
  • Eldercare Locator operated by the U.S. Administration on Aging, has a nationwide directory of state and area agencies that deal with services for the aging and atoll-free number – 1-800-677-1116 – which operates Monday through Friday, 9:00 a.m. to 8:00 p.m., Eastern time
  • Family Caregiver Alliance  web site includes information, free publications, and an online caregiver support discussion group
  • National Alliance for Caregiving online publications and resources
  • National Council on the Aging and your State Department of Aging and Disabilities
  • National Family Caregivers Association which has information on federal and state assistance programs for older Americans in each community and a  TAKE CARE! – Self Care for the Family Caregiver quarterly newsletter
  • PBS Caregiver’s Handbook (from the 90-minute program Caring for Your Parents) With Eyes Wide Open (information on caregiving, grief, difficult decisions and what may lie beyond death) Frontline, Living Old
  • Second Opinion episodes lime  Depression (Episode 201) End of Life (Episode 313) Dementia (Episode 101)
  • Well Spouse Foundation support groups and other resources to husbands, wives, and partners of chronically ill or disabled individuals
  • Healthy Women publications and other resources

Know of other resources?  Share your ideas in the  PROJECT COPE: Coalition On Patient Empowerment LinkedIn Group.

About Project COPE: The Coalition On Patient Empowerment &  Coalition on Responsible Health Policy

If you have knowledge, experience or other resources that could help patients, families, communities, or the government better understand or cope with  Asperger’s or other health care conditions, costs of care, or other challenges affecting Americans and the American health care system, we encourage you to get involved and share your insights.

As American leaders continue to struggle to deal with these and other mounting problems impacting the U.S. health care system, the input of individual Americans and businesses and community leaders is more critical than ever.  Get involved in helping to shape improvements and solutions to the U.S. health care system and the Americans it cares for by sharing your ideas and input through the Coalition For Responsible Health Care Policy  and exchanging information and ideas for helping American families deal with their family member’s illnesses, disabilities and other healthcare challenges through PROJECT COPE: Coalition On Patient Empowerment.

Sharing and promoting the use of practical practices, tools, information and ideas that patients and their families, health care providers, employers, health plans, communities and policymakers can share and offer to help patients, their families and others in their care communities to understand and work together to better help the patients, their family and their professional and private care community plan for and manage these  needs is the purpose of PROJECT COPE.

The Coalition and its PROJECT COPE arise and run on the belief that health care reform and policy must be patient centric and patient empowering.  The best opportunity to improve access to quality, affordable health care for all Americans is for every American, and every employer, insurer, and community organization to seize the opportunity to be good Samaritans.  The government, health care providers, insurers and community organizations can help by providing education and resources to make understanding and dealing with the realities of illness, disability or aging easier for a patient and their family, the affected employers and others. At the end of the day, however, caring for people requires the human touch.  Americans can best improve health care by not waiting for someone else to step up:  Step up and help bridge the gap when you or your organization can. Speak up to help communicate and facilitate when you can.  Building health care neighborhoods filled with good neighbors throughout the community is the key.

The outcome of this latest health care reform push is only a small part of a continuing process.  Whether or not the Affordable Care Act makes financing care better or worse, the same challenges exist.  The real meaning of the enacted reforms will be determined largely by the shaping and implementation of regulations and enforcement actions which generally are conducted outside the public eye.  Americans individually and collectively clearly should monitor and continue to provide input through this critical time to help shape constructive rather than obstructive policy. Regardless of how the policy ultimately evolves, however, Americans, American businesses, and American communities still will need to roll up their sleeves and work to deal with the realities of dealing with ill, aging and disabled people and their families.  While the reimbursement and coverage map will change and new government mandates will confine providers, payers and patients, the practical needs and challenges of patients and families will be the same and confusion about the new configuration will create new challenges as patients, providers and payers work through the changes.

We also encourage you and others to help develop real meaningful improvements by joining PROJECT COPE: Coalition On Patient Empowerment and by sharing ideas, tools and other solutions and other resources. The Coalition For Responsible Health Care Policy provides a resource that concerned Americans can use to share, monitor and discuss the Health Care Reform law and other health care, insurance and related laws, regulations, policies and practices and options for promoting access to quality, affordable healthcare through the design, administration and enforcement of these regulations.

You also may be interested in one or more of the following other recent articles published on the Coalition for Responsible Health Care Reform electronic publication available here, our electronic Solutions Law Press Health Care Update publication available here, and/or our HR & Benefits Update electronic publication available here.

You also can get details about how to arrange for your employees or other communities to participate in training on “Building Your Family’s Health Care Toolkit,”  using the “PlayForLife” resources to organize low-cost wellness programs in your workplace, school, church or other communities, and other process improvement, compliance and other training and other resources for health care providers, employers, health plans, community leaders and others here.

For Advice, Training & Other Resources

Should your business need legal advice about the taxability of or other requirements on tips, gratuities or other compensation,  assistance assessing or resolving potential past or existing compliance exposures, or monitoring and responding to these or other workforce, benefits and compensation, performance and risk management, compliance, enforcement or management concerns, the author of this update, attorney Cynthia Marcotte Stamer may be able to help.

Board Certified in Labor & Employment Law, Past Chair of the ABA RPTE Employee Benefit & Other Compensation Arrangements Group, Co-Chair and Past Chair of the ABA RPTE Welfare Plan Committee, Vice Chair of the ABA TIPS Employee Benefit Plans Committee, an ABA Joint Committee On Employee Benefits Council representative, Past Chair of the ABA Health Law Section Managed Care & Insurance Section, a Fellow in the American College of Employee Benefit Counsel, ABA, and State Bar of Texas, Ms. Stamer has more than 25 years’ experience advising health plan and employee benefit, insurance, financial services, employer and health industry clients about these and other matters. Ms. Stamer has extensive experience advising and assisting health plans and insurers about ACA, and a wide range of other plan design, administration, data security and privacy and other compliance risk management policies.  Ms. Stamer also regularly represents clients and works with Congress and state legislatures, EBSA, IRS, EEOC, OCR and other HHS agencies, state insurance and other regulators, and others.   She also publishes and speaks extensively on health and other employee benefit plan and insurance, staffing and human resources, compensation and benefits, technology, public policy, privacy, regulatory and public policy and other operations and risk management concerns. Her publications and insights appear in the Health Care Compliance Association, Atlantic Information Service, Bureau of National Affairs, World At Work, The Wall Street Journal, Business Insurance, the Dallas Morning News, Modern Health Care, Managed Healthcare, Health Leaders, and a many other national and local publications.

You can review other recent human resources, employee benefits and internal controls publications and resources and additional information about the employment, employee benefits and other experience of the Cynthia Marcotte Stamer here. If you or someone else you know would like to receive future updates about developments on these and other concerns, please be sure that we have your current contact information – including your preferred e-mail – by creating or updating your profile at www.cynthiastamer.com or by registering to receive these and other updates here.  Recent examples of these updates include:

NOTE:  This article is provided for educational purposes.  It is does not provide legal advice, establish any attorney-client relationship or provide or serve as a substitute for legal advice to any individual or organization.  Readers must engage properly qualified legal counsel to secure legal advice about the rules discussed in light of specific circumstances.ANY STATEMENTS CONTAINED HEREIN ARE NOT INTENDED OR WRITTEN BY THE WRITER TO BE USED, AND NOTHING CONTAINED HEREIN CAN BE USED BY YOU OR ANY OTHER PERSON, FOR THE PURPOSE OF (1) AVOIDING PENALTIES THAT MAY BE IMPOSED UNDER FEDERAL TAX LAW, or (2) PROMOTING, MARKETING OR RECOMMENDING TO ANOTHER PARTY ANY TAX-RELATED TRANSACTION OR MATTER ADDRESSED HEREIN.  ©2015 Cynthia Marcotte Stamer, P.C. Non-exclusive license to republish granted to Solutions Law Press.  All other rights reserved.