Informal caregiving — an overview
While caregivers are a diverse group, this report will focus on informal caregivers who are themselves aging. Informal caregivers provide unpaid, voluntary care and assistance for family members and others. They may be spouses, adult children, friends, neighbors, parents or grandparents of those receiving care. By providing assistance
with daily activities such as meal preparation, bathing and dressing, taking medication, transportation, shopping, and more, informal caregivers supply much of the support that enables individuals to remain in their own homes. With an estimated 2.7 million informal caregivers across the state of Texas , and between 34 and 44 million informal caregivers throughout the United States, the roles that informal caregivers play are important not only to the individuals for whom they provide care, but also to the overall economy of the state and the nation.
Informal caregivers are typically between the ages of 45 and 64 and the majority of caregivers are female.  Approximately one in three caregivers has children under the age of 18 at home, and more than half (51 percent) are employed outside the home. According to the National Alliance for Caregiving, the typical caregiver is "a 46-year-old woman caring for her widowed mother who does not live with her. She is married and employed." 
Nationally, 13 percent of caregivers assisting older adults are themselves aged 65 or over. About one-quarter of those are caring for a spouse.  Half of all caregivers provide assistance with at least one activity of daily living; 26 percent perform 3 or more of these activities, and 80 percent provide assistance with activities like
shopping, meal preparation, and housework.  Of those caring for someone who is age 65 or older, the average age of the caregiver is 63 years, with one-third of these caregivers in fair to poor health, making it likely the caregivers themselves will at some point become recipients of care.10 The majority of caregivers (58 percent) have been providing care for five years or less and 32 percent of caregivers provide care for more than 40 hours a week.
Further compounding the issues, as caregivers age, the average number of hours they spend caregiving tends to increase (see Figure 1 ).
In Texas, approximately 17 percent of those responding to the
2008 Aging Texas Well Indicators Study are currently providing
care to a family member or friend over the age of 60, a child 18
years of age or younger, or both.  Of those 17 percent, more than 95 percent are caring for a spouse or other family member, on-third have been a caregiver for more than 10 years, and more than on-third report providing full-time care (more than 40 hours per week). A specific breakdown of this data appears in Figure 2 .
Researchers believe that changes in the family structure may lead to fewer caregivers for millions of the aging Baby Boomer generation, those individuals born between 1946 and 1964. Measured by statistical norms, many of this generation's marriages have come later than those of their parents, ended sooner, and resulted in fewer births.  This generation has a divorce rate of 14.2 percent, more than twice the 6.7 percent rate of their parents.
Greater numbers of women in the workforce have created further changes in the family structure. An estimated 19 percent of women now in their early 40s have no children,  leaving them fewer options for potential family caregivers when they are needed later in life. The increase in the number of single and married adults not having children will directly affect future caregiver shortages in the absence of spouses and adult children. The result will be a significant increase in the number of individuals requiring formal community and institutional services at younger ages.
Those who do have children face different challenges. Families move more than they once did, and adult children often live more than an hour from older relatives who need care. 
It is estimated that there are approximately 5-7 million "long-distance caregivers" in the United States — generally caring for a relative who lives more than one hour away.  Nearly one-quarter of older caregivers in Texas report living more than 50 miles away from
those to whom they provide care.  Greater numbers of single-parent households and an increase in blended families consisting of stepchildren and stepparents raises the question of whether individuals who divorced and remarried will receive the same support from stepchildren as those whose families remained intact. Smaller, increasingly fragmented families and the prospect of record numbers of individuals needing assistance create the potential for a considerable shortage of family caregivers over the next several decades.
Challenges of caregiving
According to the Aging Texas Well Indicators Study, about 15 percent of older caregivers in Texas pay someone else to help them care for their loved one, and only six percent receive payment for the care they provide.  While informal caregiving reduces financial demands on the health care system, it can have high physical and mental costs for the caregiver. Negative effects to a caregiver can include physical strain, emotional stress, and sacrifices in work, financial, and personal activities.
The physical demands of providing care often include lifting and turning, bedding changes, bathing, and assistance moving the care recipient from their bed to a chair. Caregivers report more overall health problems (e.g., arthritis, insomnia, diabetes, obesity, weight gain) than non-caregivers.  Since beginning caregiving, more than 80 percent say their sleeping is worse, more than 60 percent report their eating habits are worse, and seven
out of 10 caregivers report not going to the doctor as often as they should.  One caregiver participant in a focus group had this to say about the importance of self-care for caregivers:
"Running yourself right down to the last point, and you have got to take care of yourself, because if you don't and you are the one that's taking care of your family or your group, when you are down nobody else is going to handle it.
You have to get the right amount of rest and take care of your physical and emotional needs and, if nothing else, just get out and look up and holler, ‘God, give me the grace to carry one more day.'"
Emotional demands are also high, placing caregivers at risk for depression, stress, exhaustion, and fatigue.  Caregiver stress is often brought on by the disruption of life and lifestyle, feelings of greater responsibility for another person, as well as guilt and frustration associated with unmet expectations. Caregivers experience pressures from decision-making and role conflict, and can become isolated from family and friends. 
Nearly 55 percent of caregivers reported having less time for family members, and have sacrificed vacations, leisure time, and/or hobbies. 
Depression appears to be the most common psychological disorder, with between 20 and
50 percent of caregivers reporting depressive disorders or symptoms, with the higher
levels of depression mostly attributed to those who care for individuals with dementia. 
Studies have also shown a higher rate of prescription and psychotropic drug use among
caregivers, and that stress in family caregivers is inversely correlated to income: the less
income a caregiver has, the more stress he or she is likely to experience.26 After sending
her loved one to adult day care, a participant in another focus group had this realization
regarding the emotional challenges she faced as a caregiver:
"I sent him five days a week and didn't realize how bad off I really was, because I went through a serious depression after he came out here and had some real difficulties."
Financial sacrifices for those providing care can take a significant toll. According to a 2007 survey by the National Alliance for Caregiving, caregivers spend an average of $5,500 a year as part of their responsibilities, not counting lost wages.  The
recent economic decline has only made an already difficult situation worse for many caregivers, care receivers, and their families. In a recent article in the New York Times,  the authors make the point that the current economic conditions have taken an increased toll on those caring for family members. Loss of income, whether voluntary or not, has elevated the everyday stresses of those providing care and those receiving it. In the recent Evercare/National Alliance for Caregiving (NAC) survey, one in six said they had lost a job during the downturn, and 21 percent said they had to share housing with family members to save money.  Another NAC survey, conducted in conjunction with AARP, reported that nearly 60 percent of caregivers currently work either full- or part-time while providing care. Additionally, more than 60 percent report that their caregiving responsibilities have affected their work. 
Many focus group participants had personal experiences that bear witness to those national statistics. One woman described the stark choices caregivers face when working outside the home means their loved one is alone:
"…and there were times when I was working…so he was there by himself all day. I felt guilty and I quit I don't know how many jobs, and he's been with us seven years."
Another caregiver spoke to the challenge of finding a new job that would be compatible with her role as a caregiver:
"I do it all and had to quit my job about three years ago to take care of her. It's hard to find jobs now, even though her health is better…I might have to leave work at the drop of a hat to go pick Mother up off the floor or whatever, because she has fallen a lot. Well, employers don't really want to deal with that, so it has been hard finding a job and finances have been hard and emotionally it has been very hard."
The effects of caregiving on those providing care can differ dramatically with respect to their family member or friend's disability or medical condition. The functional level of the care recipient, the amount of time devoted to caregiving, and the presence of a support network also affect the caregiver. The needs of the care recipient, as well as those of the caregiver, are certain to change over time. All of these factors can influence the caregiver's level of stress and burden, and ultimately affect the caregiver's need for supportive services. Additional factors, such as financial resources, geographic proximity to service providers, education, and awareness of available support, further
affect the caregiver's ability to access those services.
- National Family Caregiver Alliance. (2007). State of the States in Family Caregiver Support, State Profile: Texas. Retrieved July 23, 2009, from www.caregiver.org/caregiver/jsp/content/ pdfs/state_profile_tx.pdf
- U.S. Department of Health and Human Services. (1998). Informal Caregiving – Compassion in Action. Retrieved July 13, 2009, from http://aspe.hhs.gov/daltcp/Reports/carebro2.pdf
- National Alliance for Caregiving and AARP. (2004). Caregiving in the U.S. Retrieved July 13,
2009, from www.caregiving.org/data/04finalreport.pdf
- US Department of Health and Human Services (n.d.). National Clearinghouse for Long Term Care: Glossary. Retrieved July 13, 2009, from www.longtermcare.gov/LTC/Main_Site/index.aspx
- National Alliance for Caregiving and AARP. (2004). Caregiving in the U.S. Retrieved July 13,
2009, from aspe.hhs.gov/daltcp/Reports/carebro2.pdf
- Partnership for Solutions. (2002) . Chronic conditions: Making the case for ongoing care. Baltimore, MD: Johns Hopkins University.
- Texas Department of Aging and Disability Services. (2009). Aging Texas Well Indicators Survey, Overview Report, 2009. Retrieved July 13, 2009, from www.dads.state.tx.us/news_info/publications/studies/ATWindicators2009.pdf
- Neal, M.B. & Wagner, D.L. (2002). Working Caregivers: Issues, Challenges, and Opportunities for the Aging Network. Department of Health and Human Services, Administration on Aging. Washington, D.C.
- Wagner, D.L. (1997) Long-Distance Caregiving for Older Adults. Healthcare and Aging.
National Council on the Aging. Washington, D.C.
- Texas Department of Aging and Disability Services. (2009). Aging Texas Well Indicators Survey, Overview Report, 2009 . Retrieved July 13, 2009, from www.dads.state.tx.us/news_info/publications/studies/ATWindicators2009.pdf
- Shultz, R. O'Brien, A. Bookwala, J. and Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, Correlates, and Causes. The Gerontologist, 35, 771-791.
- National Alliance for Caregiving and Evercare. (2006). Evercare Study of Caregivers in Decline. Retrieved August 10, 2009, from www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf
- Family Caregiver Alliance, National Center on Caregiving. (2001, October). Who Will Provide Care? Emerging Issues for State Policy Makers. Proceedings of the Family Caregiver Alliance National Invitational Conference, San Francisco, CA.
- Tennstedt, S.L. (1999, March). Family Caregiving in an Aging Society. Paper presented at the U.S. Administration on Aging Symposium: Longevity in the New American Century, Baltimore, MD.
- National Family Caregiver Alliance. (n.d.) Selected Caregiver Statistics. Retrieved July 13, 2009, from www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439
- National Alliance for Caregiving and Evercare. (2009). The Evercare Survey of The Economic Downturn and its Impact on Family Caregiving. Retrieved on July 13, 2009, from www.caregiving.org/data/EVC_Caregivers_Economy_Report%20FINAL_4-28-09.pdf
- Leland, John. (2009). Downturn Puts a Chokehold on Those Caring for Family Members. The New York Times, 6/7/09, A16. Retrieved July 13, 2009, from www.nytimes.com/2009/06/07/us/07squeeze.html
- National Alliance for Caregiving and Evercare. (2009). The Evercare Survey of The Economic Downturn and its Impact on Family Caregiving. Retrieved on July 13, 2009, from
- National Alliance for Caregiving and AARP. (2004). Caregiving in the U.S. Retrieved July 13, 2009 from www.caregiving.org/data/04finalreport.pdf
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May 15, 2014