More than ever before, caregiving is recognized as a key element of everyday life for millions of families throughout the United States. As our population ages, more families are providing care for an older adult at home, and an increasing number of people will need such care in the future. Current demographic and healthcare trends make this issue even more significant:
Caregiving impacts not only a growing number of individuals, but their families and their workplaces as well. According to recent studies, as many as 42 percent of employed Americans (more than 54 million people) have provided eldercare in the last five years; 17 percent currently provide care. The average age of caregivers is 49—a peak year for earnings and for career achievement. Women take on slightly more responsibility for care, but men are greatly impacted also.
The types of care ranges from personal (bathing, dressing, helping with toileting, feeding) to every-day tasks and activities (preparing meals, providing transportation, handling finances, managing medications, coordinating services, communicating with healthcare professionals). The average caregiver provides care for more than four years, with some care extending for decades. Few caregivers use paid help: fully 76 percent of working caregivers rely only on their families and themselves. At times, caregiving can seem like a second job.
Thus millions of working adults—an estimated one in four households—juggle the competing demands of caring for a chronically ill relative, raising a family, and managing a career. Work disruptions due to employee caregiving responsibilities result in productivity losses to businesses of an estimated $2110 per year per employee—a loss of up to $33.6 billion per year for full-time employees as a group.
Negative effects on working caregivers may include poorer health, time lost from work and lower productivity, leaving a job to give care, lost career opportunities, lost employer paid health benefits and lower current and future earnings, including Social Security and pension income. Eventually, 10 percent, over the time they are caregiving, report quiting their jobs to provide care full-time, resulting in an average loss of more than $303,880each in wage, Social Security income and pension income over a lifetime.
This Fact Sheet reviews the key issues that caregivers face; suggests measures they can take to help manage their work and care conflicts; reviews legal options to clarify financial and healthcare decision-making; and discusses cost-efficient ways employers can retain valued employees by offering programs that are supportive to caregivers. The Resources listed at the end of the Fact Sheet offer additional information and sources of help.
Many community resources exist to help caregivers and their ill or frail loved ones. Your challenge as a caregiver is to determine how to best utilize the time and energy you have available for caregiving in addition to the demands of your job and family responsibilities. In sorting out your family's needs, and deciding where you need help, consider the following steps:
Information and Referral: These are services to help you locate local programs and services. Senior or community organizations maintain lists of resources by geographic area to help you get started in finding the help you need. Some employers also offer information through Employee Assistance Programs (EAP).
The Internet provides resource listings and online support groups where you can seek information. Family Caregiver Alliance's online Family Care Navigator offers information on public resources for every state, including local Area Agencies on Aging.The national Eldercare Locator provides information on Area Agencies on Aging and other services. Even if your parent lives far away, you can find services to help.
There may be chores that can be done by friends, family, neighbors or faith group members. Simple tasks include preparing meals, providing rides, helping with grocery shopping or laundry, providing reassuring phone calls or companionship for your relative. Local senior centers or colleges often have programs for community volunteers. Websites such as www.LotsaHelpingHands.com provide password-protected sites to help you schedule help and keep family and friends notified of your loved one's condition.
A family meeting can be very helpful in discussing more complicated medical and legal issues. Identifying needs, sharing concerns and delegating tasks should be done in an open, supportive environment where family members can identify potential solutions together. The meeting can be held in-person, by phone or by video-conference.
To work through certain family dynamics or conflicts, it's often helpful to involve a person outside the family. A social worker, geriatric care manager or other professional skilled in group interaction and family dynamics can be hired to help the family and caregiver make a care plan and, if needed, help with care arrangements and monitoring. This may be especially useful if your ill parent lives far from you.
Care at home can be formal (paid) through a home care agency or privately hired personal attendant, or informal (unpaid)—a friend, family member, or volunteer. (Sometimes, through a formal Personal Care Agreement, a family member can be paid to provide care.) If no medical or personal care is needed, look for a caring, responsible, person who could be a welcome companion for your relative. Personal referrals are the best way to find this person, or an ad can be placed online or in a local newspaper to search for a part-time companion and chore worker. If care involves toileting or bathing, you will need a person who is trained, competent and sensitive. Similarly, if lifting the person and/or a wheel chair is necessary, be sure the worker is trained and physically able do the work. Always do criminal background checks and call at least three past employer references.
When medical or health care is required, such as giving medications, providing catheter care or monitoring a feeding tube, you may decide to hire a certified nursing assistant (CNA) or licensed practical nurse (LPN or LVN in California) depending on the level of education and skill required. A registered nurse (RN) is needed only when more complex medical care is necessary (such as treating wounds, or managing a ventilator). Medicare may cover medically necessary part-time care for a home-bound older person in limited, specific situations.
Adult day care centers provide a range of social and therapeutic activities outside the home for older adults and adults with a disability. These centers, located primarily in urban areas, vary in their service mix. Most offer social services and activities in a safe, supportive environment. Depending on the program, some offer transportation, personal health care (such as bathing and incontinence care), and medical or allied health care (such as physical therapy and occupational therapy), may be available. It is important to check eligibility criteria. Some centers may not accept individuals who are disruptive, have certain health problems or are incontinent (loss of bladder/bowel control). Participants generally attend several hours per day, up to five days a week (weekend adult day care is rarely available), making it possible for the caregiver to go to work assured that the care recipient is in a safe, place.
In California, eleven Caregiver Resource Centers (CRCs) provide a range of supportive services to family caregivers of adults with disabling health conditions (e.g., Alzheimer's, Parkinson's, stroke, traumatic brain injury, Parkinson's disease). CRCs help caregivers with information, educational programs and emotional support, as well as planning for and arranging services for a loved one. Most services are free of charge. More information can be found by visiting FCA's list of California's Caregiver Resource Centers.
Many other community services are available to help, including care management services, home-delivered meals, transportation services, temporary overnight care, hospice (for terminally ill individuals), and support groups (for either the caregiver or the ill individual). Your local Area Agency on Aging or senior center can help you locate these.
When a parent or relative can no longer be cared for at home, it may be necessary to consider a residential facility such as an assistive living residence or nursing home. Arriving at this decision can be quite painful. Both you and your parents are likely to have strong feelings about nursing homes, and financing is always an issue. You may want to discuss the decision with other family members, a counselor or spiritual advisor.
Ultimately, it is important to evaluate your parent's current living situation and carefully assess how care needs can best be met. Consider your parent's safety, isolation, ability to be left alone, medical needs, and available help for basic daily activities (e.g., eating, dressing, toileting, bathing, moving around).
In addition, the daily strain on you as the caregiver must not be ignored. If you, your sibling or parent are the primary caregiver, it is critical to recognize when caregiving demands—especially when combined with work and other family demands—exceed what is possible for you, your family and friends. If you determine that home is no longer a good or safe place to be, it is time to look at other viable residential care options:
If your parent becomes impaired, you may face a host of new legal and financial issues. Typical concerns include:
An attorney can help you plan for the financial aspects of your parent's care needs. At a minimum, a suitable attorney should have experience in estate and financial planning, probate and wills, and be familiar with public benefits including Medicaid, Social Security, special needs trusts, tax planning, and housing and health care contracts. Some ways to locate an attorney include: your local County Bar Association or National Association of Elder Law Attorneys referral service, senior centers, legal aid organizations, or a personal recommendation from a friend or fellow support group member.
Making decisions for a person with an illness such as Alzheimer's disease or a stroke can be difficult and emotionally charged. The process can be simplified significantly, however, if your parent or relative has completed a Durable Power of Attorney (DPA) and a Durable Power of Attorney for Health Care and Advance Health Care Directive. These documents enable your parent to designate another person to manage his or her finances and healthcare decisions. The legal authority to make those decisions begins only when and if the person becomes incapable of doing so on their own. It's a good idea to have DPA and DPAHC forms reviewed by an attorney experienced in estate planning to ensure that the person's wishes are clearly expressed and the information is complete.
If your parent is already suffering from dementia and does not have the capacity to make decisions, you may need to obtain a conservatorship. A conservatorship provides the legal authority to manage a person's finances, estate, personal affairs, assets and medical care. This is a court procedure.
In addition to providing access to a wealth of medical and caregiving information available 24 hours a day on your computer, tablet or cell phone, digital technology may also be useful for such things as ordering prescriptions, communicating with healthcare professionals, staying in contact with friends and family, scheduling home care, learning new skills through webinars, tracking movement, and even visually checking on loved ones during the day or providing surveillance of your parent's home when you can't be there.
Caregiving as a workplace issue is now recognized by a growing number of employers. Larger corporations are sometimes able to offer support in ways small ones cannot, but there are actions that companies of any size can take to support employees who have caregiving responsibilities:
Caring for an ill or disabled parent can be particularly challenging as you attempt to balance the competing demands of work, family and caregiving. Negotiating adequate time off from work, coping with tension filled family dynamics and having time to cope with your own fears and concerns about your parents? well-being all contribute to increased stress. Taking care of yourself will help ensure that you are physically and emotionally able to care for your family member. To help care for you, consider the following steps:
Whether you are caring for a parent out of love and devotion, or simply being responsible by honoring a familial obligation, assuming the role of caregiving daughter or son is never easy. Your decision to care may occur all of a sudden when you receive an emergency call from the hospital, or it may be planned, having over time prepared for your parent to live with or near you. In either case saying, "Of course I'll help and take care of you" is often the only right response to a situation when your parent needs help. Family friendly workplace policies can go a long way towards making your caregiving journey less stressful and doable.
Caregiving in the US 2009. National Alliance for Caregiving and AARP.
Employer Best Practices for Workers with Caregiving Responsibilities. US Equal Opportunity Commission. 2011.
Enforcement Guidance: Unlawful Disparate Treatment of Workers with Caregiving Responsibilities. US Equal Opportunity Commission. 2011.
Family and Medical Leave Act. Department of Labor. Accessed July, 2012
Leaves That Pay: Employer and Worker Experiences with Paid Family Leave in California. Eileen Appelbaum, Ruth Milkman. Center for Economic and Policy Research. January 2011.
The Metlife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents. MetLife Mature Market Institute, National Alliance for Caregiving, Center for Long Term Care Research and Policy, New York Medical College. June 2011.
Paid Family Leave California. California Work and Family Coalition. Accessed August 2012.
Valuing the Invaluable: 2011 Update. The Growing Contributions and Costs of Family Caregiving. Lynn Feinberg, Susan C. Reinhard, Ari Houser, Rita Choula. AARP Public Policy Institute. July 2011.
"Working caregivers: Issues, challenges, and opportunities for the aging network." National Family Caregiver Support Program Issue Brief Neal, Margaret B., and Donna L. Wagner. (2002): 1-31.
Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388 | (800) 445-8106
caregiver.org | [email protected]
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA's National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, ALS, head injury, Parkinson's and other debilitating health conditions that strike adults.
Family Care Navigator
Online directory of resources for caregivers in all 50 states. Includes resources for older or disabled adults living at home or in a residential facility, and information on government health and disability programs, legal resources, disease-specific organizations and more.
Best Practices in Workplace Eldercare. National Alliance for Caregiving and ReACT (Respect a Caregiver's Time). March 2012.
Information on services for older adults and their families. (800) 677-1116
(800) MEDICARE or (800) 633-4227
National Academy of Elder Law Attorneys
1577 Spring Hill Road, Suite 220
Vienna, VA 22182
Provides information on how to choose an elder law attorney and referrals to elder law attorneys.
National Association of Professional Geriatric Care Managers
3275 West Ina Road, Suite 130
Tucson, AZ 85741
Families and Work Institute
267 Fifth Avenue, 2nd Floor
New York, NY 10016
Labor Project for Working Families
Institute of Industrial Relations
2521 Channing Way
Berkeley, CA 94720
5025 Wisconsin Avenue NW
Washington DC, 20016
(202) 537-1645, x270
National Council on Aging
Loverde, Joy. The Complete Eldercare Planner.
2009. Three Rivers Press.
Morris, Virginia. How to Care for Aging Parents.
2004. Workman Publishing.
Neal, Margaret B.; Hammer, Leslie B., Working Couples Caring for Children and Aging Parents: Effects on work and well-being. 2007. Mahwah, NJ, US: Lawrence Erlbaum Associates Publishers.
Prepared and updated by Family Caregiver Alliance. Reviewed by Margaret Neal, PhD Director/Professor at Portland State University, Institute on Aging . Funded by The Genentech Foundation and individual donors. Updated October 2012. © Family Caregiver Alliance 1999-2014. All rights reserved.