Millions of Americans step into the role of family caregiver without really thinking about this label or fully understanding the responsibilities that come with it. When an aging loved one needs help, we rise to the occasion and do our best to support them. The comprehensive care family caregivers provide can extend seniors’ independence, delay long-term care placement, and improve health outcomes, safety, and quality of life. But questions remain surrounding this critical cohort of people. What do family caregivers do? Why are their numbers growing so rapidly? Who are they taking care of? And, most importantly, where can they get the caregiver support, resources and information they so desperately need?
What Is a Family Caregiver?
Put simply, a family caregiver is an individual who cares for a loved one with a short-term or long-term physical and/or mental disability or illness. Other terms used to refer to people who take on this role include “informal caregiver” and “unpaid caregiver” because most do not receive compensation for the invaluable assistance they provide.
Who Are Family Caregivers and Care Recipients?
According to the Caregiving in the U.S. 2020 report published by the National Alliance for Caregiving and AARP,
53 million Americans are providing unpaid care for relatives and friends.
Most of those caregivers (41.8 million) are looking after care recipients who are age 50 or older. Caregiving situations vary widely, but there are a few trends that arise when taking a closer look at the demographics of those caring for family and friends.
Demographic Characteristics of Family Caregivers
- Caregiver Gender: 61 percent female; 39 percent male
- Caregiver Age: 54 percent of family caregivers are age 50 or older (average age is 49.4 years old)
- Caregiver Race/Ethnicity: 61 percent non-Hispanic white; 17 percent Latinx/Hispanic; 14 percent non-Hispanic African American or black; 5 percent Asian/Pacific Islander; 3 percent other race/ethnicity, including multiracial
- Caregiver Marital Status: 54 percent married; 21 percent single, never married; 8 percent divorced; 7 percent living with a partner; 4 percent widowed
- Caregiver Employment Status: 61 percent employed; 39 percent not employed
- Caregiver Household Income: 36 percent have a net income less than $50,000; 64 percent have a net income of $50,000 or more (average household income is $67,500)
- Number of Care Recipients: 76 percent care for one adult; 24 percent care for two or more adults
Demographic Characteristics of Care Recipients
- Care Recipient Gender: 61 percent female; 39 percent male
- Care Recipient Age: 46 percent of care recipients are age 75 and older (average age is 68.9 years old)
- Care Recipient Relation to Caregiver: 89 percent of care recipients are related to their caregivers by blood or marriage
- Care Recipient Relationship to Caregiver: 42 percent parent; 12 percent spouse/partner; 8 percent parent-in-law; 8 percent grandparent/grandparent-in-law; 7 percent sibling/sibling-in-law
- Care Recipient Living Situation: 26 percent of care recipients live alone
- Care Recipient Residence: 43 percent of care recipients live in their own home; 40 percent of care recipients live in their caregiver’s household; 11 percent live in senior housing communities
- Care Recipient’s Main Reason for Needing Care: 16 percent “old age”; 12 percent mobility issues; 11 percent Alzheimer’s disease/dementia; 6 percent cancer; 6 percent surgery/wound care; 5 percent mental/emotional illness; 5 percent stroke; 4 percent diabetes; 4 percent feeble/falling; 3 percent blindness/vision loss
What Do Family Caregivers Do?
Family caregivers provide an average of 23.7 hours of care each week. This number goes up substantially for those whose care recipients live with them (37.4 hours per week), making caregiving the equivalent to a full-time job. Family caregivers help seniors with a variety of tasks that are broken down into a few main categories.
Assist With Instrumental Activities of Daily Living
Instrumental activities of daily living (IADLs) are defined as “activities that allow an individual to live independently in a community.” IADLs include activities like cooking, cleaning, transportation, laundry, medication management, shopping and managing finances. While the ability to perform IADLs is not necessarily required for functional living, these tasks do have an impact on a senior’s ability to live independently and quality of life.
Ninety-nine percent of family caregivers provide help with instrumental activities of daily living. The most common types of IADL support family caregivers provide are transportation assistance (80 percent), assistance with grocery shopping (79 percent), help with housework (76 percent) and meal preparation (64 percent). These are often the first tasks that seniors require assistance with, but their needs will likely increase as their abilities decrease over time. For many Americans, stepping in to help a senior perform IADLs signals the beginning of the caregiving journey.
Assist With Activities of Daily Living
Activities of daily living (ADLs) are defined as “fundamental skills that are required to independently care for oneself.” The six ADLs are personal hygiene or grooming, dressing, toileting, continence, transferring or ambulating, and eating. Unlike IADLs, a senior must be able to perform activities of daily living (even if they depend on another person’s help or require the use of assistive devices) in order to live independently and remain safe in their home environment.
Sixty percent of family caregivers help their care recipients with at least one ADL. The most common types of ADL support caregivers provide are help with walking and transferring (41 percent), help getting dressed (31 percent), and bathing assistance (27 percent). Because ADLs involve intimate personal care tasks, it is often very difficult to get a senior to accept help in these areas, even though these activities are vital to their health and safety.
Providing assistance with incontinence care and toileting tends to be one of the most physically and mentally challenging aspects of elder care for many family caregivers. Cognitive decline caused by Alzheimer’s disease and other types of dementia increases the likelihood and frequency of helping a senior with ADLs as well as the difficulty involved. As an elder’s physical and mental abilities wane, they tend to depend on their caregiver more and more for help with basic care needs.
Assist With Medical and Nursing Care
A large number of family caregivers also provide skilled nursing tasks for their care recipients. Medical tasks can include administering medications, giving injections, tube feeding, wound care, catheter and colostomy care, blood sugar testing, and monitoring vital signs. More than half of family caregivers (58 percent) report helping their care recipients with more complex nursing care tasks. This is surprising since a research letter published in JAMA Internal Medicine found that only 7 percent of older adults’ family caregivers report receiving formal role-related training.
Other Caregiving Responsibilities
Last, but certainly not least, family caregivers provide comprehensive support systems for seniors. They are advocates who often help research long-term care solutions, resources, and benefits, communicate with health care providers, respond to emergencies, create and update care plans, and make difficult care decisions regarding their loved ones’ health and finances. Family caregivers are also a vital source of social and emotional support. While these tasks do not fall into a neat category, they are necessary for coordinating a senior’s care and require a great deal of time, patience and determination.
The Growing Importance of Family Caregivers
Since 2015, the number of Americans providing care for family members and friends has increased by 7.6 million. To understand this increase in adult children, spouses and even young people caring for family members who are elderly, disabled or chronically ill, we must first look at the shifting demographics in the United States and consider the costs of elder care services.
Americans Are Getting Older and Living Longer
According to the U.S. Census Bureau, the number of adults ages 65 and older is projected to nearly double from 52 million in 2018 to 95 million in 2060. This rapid growth of the older adult population is primarily driven by the aging baby boomers, a generation born between 1946 and 1964.
In addition to this unprecedented growth in the senior population, life expectancy in the U.S. increased from 68 years in 1950 to 78.6 years in 2017. While this may seem like good news, these two trends mean that the country is facing what has been coined the “silver tsunami”—a metaphorical tidal wave of older Americans who are living longer and therefore more likely to develop age-related conditions like Alzheimer’s disease and other forms of dementia, heart disease, cancer and Parkinson’s disease. As a result, the demand for long-term care services and supports is expected to surge as well.
While normal age-related changes in functioning, such as mobility loss, incontinence, difficulties with activities of daily living (ADLs), vision changes and hearing loss, have serious implications, the looming burden of dementia care threatens to be highly problematic for long-term care providers and families. The Alzheimer’s Association’s 2020 Alzheimer’s Disease Facts and Figures report estimates that the number of seniors with Alzheimer’s disease will grow from 5.8 million in 2020 to 13.8 million by 2050.
Seniors Depend on Caregivers to Meet Their Needs
As older Americans develop more chronic health conditions and their functional abilities decline, they must depend on others to help them continue living independently, whether they are paid caregivers, family caregivers or both. It isn’t a matter of if an elder will need help but rather when and how they will obtain it. The U.S. Department of Health and Human Services (DHHS) estimates that seniors have a 70 percent chance of requiring long-term care in their remaining years.
Seniors have the option to hire in-home care services or move to an assisted living community, nursing home or memory care unit to ensure their needs are met, but most prefer to receive care in the comfort of their own homes from those they know best—their family members. The Genworth Cost of Care Survey 2019 estimates that the national median cost of an assisted living facility is $4,051 per month, while the cost of a semi-private room in a skilled nursing facility is $7,513 per month. Sadly, many people do not plan accordingly for these future needs. Even if a senior has amassed significant retirement savings and assets, their funds may not last long when care expenses alone can add up to $50,000 or $100,000 per year.
Providing care in seniors’ own homes usually allows elders to delay placement in long-term care settings or avoid it altogether. This choice generally saves elders money (although it often involves great personal sacrifice from family caregivers). A report published by the AARP Public Policy Institute estimated that about 41 million family caregivers provided 34 billion hours of care in 2017. The economic value of their unpaid contributions totaled approximately $470 billion.
Older adults who have not been fortunate enough to plan financially for old age have more limited options. There are some government programs that can help offset the costs of elder care, but they usually offer limited coverage or have strict eligibility requirements and/or long wait lists. Although some states have created programs that pay family caregivers, no state covers 24/7 care in the home. All these factors have led to millions of family caregivers contributing their time, money and energy to ensure their aging loved ones’ needs are met.
The Impact of Family Caregiving
Countless adult children and spouses are happy to help their loved ones navigate the myriad challenges that come with illness and old age. However, this responsibility has deep and lasting effects—both positive and negative—on family caregivers’ lives. Many find a sense of purpose in providing care, but even a few hours of caregiving each week can disrupt normal routines and relationships. Furthermore, it is important to understand that caregiving frequently gets more intense over time. The average duration of caregiving is 4.5 years, and 29 percent of caregivers have been in this role for five years or more.
As caregiving responsibilities grow, family caregivers experience significant changes in their lives. Performance may suffer at work, relationships with other family members and friends may be neglected, finances may be stretched thin, and one’s own health may fall by the wayside. There is often a great deal of pressure from the care recipient and other family members to continue providing most of their care despite increasing challenges. Additionally, providing hands-on care can be both physically and emotionally demanding work, for which most family caregivers do not get paid. Stressors can add up and, without regular respite and help from other unpaid or paid care providers, caregiver burnout can set in. This is why proper caregiver support is so important.
Resources for Family Caregivers
Improving seniors’ access to long-term care programs and caregivers’ access to information and support services is paramount. AgingCare.com is devoted to providing families with the information and resources they need to care for their loved ones so they can enjoy their time together more and worry less. Explore all that AgingCare.com has to offer starting with our most popular caregiver resources below.
Work with a senior care specialist who will help you find in-home care services, independent living, assisted living, nursing home care or memory care in your area free of charge.
Visit the Caregiver Forum, where caregivers can share their experiences and learn from others by asking questions, giving answers and participating in group discussions.
Explore hundreds of articles, checklists and legal forms pertaining to popular caregiving topics that are researched and written by professional writers and elder care experts.
Download free caregiving eBooks and printable senior care guides.
Sources: Caregiving in the U.S. 2020 (https://www.caregiving.org/wp-content/uploads/2020/05/Full-Report-Caregiving-in-the-United-States-2020.pdf); Instrumental Activity of Daily Living (IADL) (https://www.ncbi.nlm.nih.gov/books/NBK553126/); Activities of Daily Living (ADLs) (https://www.ncbi.nlm.nih.gov/books/NBK470404/); Factors Associated With Receipt of Training Among Caregivers of Older Adults (https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2729742); Fact Sheet: Aging in the United States (https://www.prb.org/aging-unitedstates-fact-sheet/#footnote-1); Age-Related Diseases and Clinical and Public Health Implications for the 85 Years Old and Over Population (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5732407/); How Much Care Will You Need? (https://longtermcare.acl.gov/the-basics/how-much-care-will-you-need.html); Genworth Cost of Care Survey 2019 (https://www.genworth.com/aging-and-you/finances/cost-of-care.html); Valuing the Invaluable 2019 Update: Charting a Path Forward (https://www.aarp.org/content/dam/aarp/ppi/2019/11/valuing-the-invaluable-2019-update-charting-a-path-forward.doi.10.26419-2Fppi.00082.001.pdf)