Karen, age 46, has just finished another 10-hour day at work as a CPA at a major auditing firm, and as she heads out the door, she knows her day is not over yet. In addition to a husband and two teenage children at home, Karen’s mother, who was widowed several years ago, lives alone, but needs help with day-to-day tasks at times. Karen will first stop at the grocery store to get some food for her mother for the week, followed by a stop at the pharmacy for her mother’s medicine, before going to her mother’s home and putting the groceries away and helping her with her bath. By the time Karen has finished at her mother’s home, and walks into her own family’s front door, it is 8 PM.
Karen is not alone with her long day of work followed by caring for an elderly loved one.1 Over 43 million individuals provide unpaid care to another adult, with one-third of those adults diagnosed with
.2 The typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed. Approximately 66% of family caregivers are women. More than 37% have children or grandchildren under 18 years old living with them. 3 Like Karen, 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. Typically, male caregivers are less likely to provide personal care:4
- 28% of females who are caregivers help their loved one get dressed5
- 24% of male who are caregivers help their loved one get dressed
Bathing is of a similar nature:
- 40% of females who are caregivers help their loved ones with bathing6
- 16% of males who are caregivers helped their loved ones with bathing
While males may be sharing in caregiving tasks more than in the past, females still shoulder the major burden of care:7
- Number of hours per week a typical female caregiver provides: 21.9 hours
- Number of hours per week a typical male caregiver provides: 17.4 hours
However, it should be noted that while 36% of female caregivers handle the most difficult caregiving tasks such as bathing, toileting, and dressing compared to 24% of their male counterparts, males who are more likely to help with finances, arrangement of care, and other less burdensome tasks.8
Health Issues of the Elderly Who Receive Caregiving9
Heart disease and cancer pose their greatest risks as people age, as do other chronic diseases and conditions, such as stroke, chronic lower respiratory diseases, Alzheimer’s disease, and diabetes. Influenza and pneumonia also continue to contribute to deaths among older adults, despite the availability of effective vaccines. The burden of chronic diseases encompasses a much broader spectrum of negative health consequences than death alone. People living with one or more chronic diseases often experience diminished quality of life, generally reflected by a long period of decline and disability associated with their disease. Chronic diseases can affect a person’s ability to perform important and essential activities, both inside and outside the home. Initially, they may have trouble with the instrumental activities of daily living (IADLs), such as managing money, shopping, preparing meals, and taking medications as prescribed. As functional ability—physical, mental, or both—further declines, people may lose the ability to perform more basic activities, called activities of daily living (ADLs), such as taking care of personal hygiene, feeding themselves, getting dressed, and toileting. The inability to perform daily activities can restrict people’s engagement in life and their enjoyment of family and friends. Lack of mobility in the community or at home significantly narrows an older person’s world and ability to do the things that bring enjoyment and meaning to life. Loss of the ability to care for oneself safely and appropriately means further loss of independence and can often lead to the need for care in an institutional setting. The need for caregiving for older adults by formal, professional caregivers or by family members— and the need for long-term care services and supports—will increase sharply during the next several decades, given the effects of chronic diseases on an aging population.
The leading chronic conditions of the elderly that often require the assistance of a caregiver include the following:
Chronic Condition % of Elderly with Condition10
Heart Disease 27.7%
Chronic Lower Respiratory Diseases 6.5%
Alzheimer’s Disease 4.4%
Activities of Daily Living and Instrumental Activities of Daily Living11
Activities of daily living (ADLs) refer to the common, everyday tasks people learn to do to become self-sufficient. The simple term for daily activities include bathing, eating and dressing. Every person must learn them to remain independent and healthy, and are often compared to what a child must be able to perform before beginning Kindergarten. As people age or become ill, the body and mind loses dexterity, balance, motor skills and the brain’s keen awareness of the body’s signals. For this reason, as people age, they need help from other human beings to accomplish them.
The major areas of Activities of Daily Living include:
- Getting Dressed
- Oral Hygiene
As people age, or if they live with a physical or mental challenge that prevents mobility or understanding, they require assistance in the basic self-care activities. Assessing a person’s ability to perform one or several skills will determine their physical limitations and the care they need. Ongoing assessments of one’s needs measure the progress or deterioration of their health.
Instrumental Activities of Daily Living (IADLs) are those actions that are not necessary for functional living, but the actions that allow a person to perform complex skills. The term instrumental activity is a traditional term in the assisted living service definitions and descriptions. By assessing an individual’s ability to perform them will give a clear picture of their physical and mental condition. The IADLs consist of:
- Managing Finances
- Telephone Use
- Technology Use
- Medication Management
- Community Mobility
- Meal Preparation and Cleanup
Within the population of individuals age 65+, reported 35% of men and 38% of women had some disability that cause them to require assistance to meet essential personal needs. It also found that 92% of institutionalized (assisted living and nursing home) Medicare beneficiaries had difficulties with one or more ADLs and 76% of them had difficulty with three or more ADLs.
Several studies have shown a threshold effect as a determining factor of an individual entering a nursing home because of ADL Limitations. The risk of institutionalization increased fivefold for elderly persons with 3+ ADL limitations, but only twofold for those with 1–2 limitations. It has also been concluded that the threshold indicator of functional impairment was one of the strongest predictors of nursing home placement compared to other commonly used socioeconomic control factors.12
Caregiving can be both physically and mentally taxing, and can affect the well-being of the caregiver. Factors linked to caregiver’s physical health include the care recipient’s:
- Behavior problems
- Cognitive impairment
- Functional disabilities
- The duration and amount of care provided
- Vigilance demands (such as constantly having to watch a person with Alzheimer’s disease to prevent self-harm)
- Caregiver and patient co-habitating
Feelings of distress and depression associated with caregiving also negatively affect the caregiver’s physical health. Caring for a patient with dementia is more challenging than caring for a patient with physical disabilities alone. People with dementia typically require more supervision, are less likely to express gratitude for the help they receive, and are more likely to be depressed. All of these factors have been linked to negative caregiver outcomes.14
- Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop serious illness, and have high levels of obesity and bodily pain.14,15,16
- Studies demonstrate that caregivers have diminished immune response, which leads to frequent infection and increased risk of cancers. 17, 18,19
- Caregivers have a 23% higher level of stress hormones and a 15% lower level of antibody responses.20
- Caregivers also suffer from slower wound healing.21
- Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk than non-caregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.22
- Women providing care to an ill/disabled spouse are more likely to report a personal history of high blood pressure, diabetes and higher levels of cholesterol.23
- Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.24
- Compared to non-caregivers, women caregivers are twice as likely not to fill a prescription because of the cost (26% vs. 13%).25
Additionally, greater degrees of depression and stress and low ratings of subjective well-being in caregivers are consistently associated with the following factors:26
- The care recipient’s behavior problems
- The care recipient’s cognitive impairment
- The care recipient’s functional disabilities
- The duration and amount of care provided
- The caregiver’s age, with older caregivers being more affected
- The relationship between caregiver and care recipient
- The caregiver’s sex, with females being more affected
Chief clinical mental issues associated with caregiving includes:
- Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression.27
- Both caregiver depression and perceived burden increase as the care receiver’s functional status declines. Thus, higher levels of clinical depression are attributed to people caring for individuals with dementia. Studies show that 30 to 40% of dementia caregivers suffer from depression and emotional stress.28, 29
- Depression and anxiety disorders found in caregivers persist and can even worsen after the placement of the patient in a nursing home. Many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home.30
- Depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease. Depression is also one of the most common conditions associated with suicide attempts.31
Because of these issues, caregiving can affect both the employee’s corporate life the employer:
- 64% of working parents caring for a special needs child believe that caregiving responsibility has negatively impacted their work performance32
- American businesses can lose as much as $34 billion each year due to employees’ need to care for loved ones 50 years of age and older33
- Caregivers caring for elderly loved one’s cost employers 8% more in health care costs estimated to be worth $13.4 billion per year34
Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.
The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:
- Withdrawal from friends, family, and other loved ones
- Loss of interest in activities previously enjoyed
- Feeling blue, irritable, hopeless, and helpless
- Changes in appetite, weight, or both
- Changes in sleep patterns
- Getting sick more often
- Feelings of wanting to hurt yourself or the person for whom you are caring
- Emotional and physical exhaustion
As stated prior, certain thresholds of the number of ADL Limitations that a patient has results in a higher likelihood of being institutionalized. Further studies have shown that specific stressors that a caregiver experiences also results in higher likelihoods of institutionalization into a nursing home, often as a result of specific ADL limitations:35
Specific Stressors Affecting Caregiver % Increased Likelihood of Institutionalization36
Caregiver Reports Caregiving is a Physical Strain 22.2%
Caregiver Sleep Disturbed 3+ Times Last Week 10.4%
Recipient had Behavior Problems 3+ Times Last Week 10.1%
Caregiving is a Financial Hardship 8.9%
Caregiver is Recipient’s Child 8.8%
Caregiver is in Fair or Poor Health 5.9%
Home Health Care
Home Healthcare with a Registered Nurse can be a great service to both help the elderly patient while simultaneously reducing the stress and subsequent physical and mental issues that can affect the caregiver. Home health care is clinical medical care provided by a registered nurse, occupational therapist, physical therapist or other skilled medical professionals, and is often prescribed as part of a care plan following a hospitalization.37
- Therapy and skilled nursing services
- Administration of medications, including injections
- Medical tests
- Monitoring of health status
- Wound care
Situations in which home health is prescribed include:
- Following an inpatient hospitalization, rehabilitation, or a stay at a skilled nursing facility – to help the senior transition back to independence
- When a senior has had a recent medication change, in order to monitor for side effects and assure a new medication is effective
- When seniors experience an overall decline in functioning – in order to help them to regain independence through therapy or learning new skills to compensate for their deficit
Other areas of assistance for the caregiver include:
- Home health services — These agencies provide home health aides and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.
- Adult day care — These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
- Nursing homes or assisted living facilities — These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.
- Private care aides — These are professionals who specialize in assessing current needs and coordinating care and services.
- Caregiver support services — These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
Karen is not alone in her quest to help her mother; no family caregiver has to be. With these and other offerings, Karen can not only help with her mother’s health and livelihood, but also make sure her livelihood, family, and work life are as unaffected as possible.
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2 Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures
3 Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP. November 2009
4 Institute on Aging. (2016). How IOA Views Aging in America.
5-8 National Alliance for Caregiving and AARP`. (2009). Caregiving in the U.S.
9 CDC, The State of Aging and Health in America 2013.
10 CDC, National Center for Health Statistics. National Vital Statistics System, 2007−2009.
11 “Activities of Daily Living (ADLs),” Assistedlivingfacilities.org.
12 Fong, Joelle, Mitchell, Olivia, and Koh, Benedict; “Disaggregating Activities of Daily Living Limitations for Predicting Nursing Home Admission,” Health Services Research. 2015 Apr; 50(2): 560–578.
13Shulz, Richard, and Sherwood, Paula, “Physical and Mental Health Effects of Family Caregiving,” American Journal of Nursing. 2008 Sep; 108(9 Suppl): 23–27.
14 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.
15 Shaw, W.S., Patterson, T.L., Semple, S.J., Ho, S., Irwin, M.R., Hauger, R.L. & Grant, I. (1997). Longitudinal analysis of multiple indicators of health decline among spousal caregivers. Annals of Behavioral Medicine, 19: 101-109.
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17 Kiecolt-Glaser, J.K., Dura, J.R. & Speicher, C.E., (1991). Spousal caregivers of dementia victims: Longitudinal changes in immunity and health. Psychosomatic Medicine, 53(4):345-362.
18 Kiecolt-Glaser, J., Glaser, R., Gravenstein, S., Malarkey, W.B. & Sheridan, J.,(1996). Chronic stress alters the immune response to influenza virus vaccine in older adults. Proceedings of the National Academy of Sciences of the United States of America, 93: 3043-3047.
19 Glaser, R. & Kiecolt-Glaser, J.K. (1997). Chronic stress modulates the virus-specific immune response to latent herpes simplex virus Type 1. Annals of Behavioral Medicine, 19: 78-82.
20 Vitaliano, P., Zhang, J. & Scanlan, J. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6): 946-972.
21 Kiecolt-Glaser, J.K., Marucha, P.T., Malarkey, W.B., Mercado, A.M. & Glaser, R. (1996) Slowing of wound healing by psychological stress. Lancet, 346(8984): 1194-1196.
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23 Lee, S.L., Colditz, G.A., Berkman, L.F., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119.
25 The Commonwealth Fund. (1999). Informal Caregiving (Fact Sheet). New York.
26 Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective. In Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12 – 37). San Francisco: Family Caregiver Alliance.
27 Grunfeld, E. (2004). Family caregiver burden: Results from a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal. 170(12): 1795-1801.
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29 Alzheimer’s Association & National Alliance for Caregiving. (2004). Families Care: Alzheimer’s Caregiving in the United States. Chicago, IL: Alzheimer’s Association and Bethesda, MD: National Alliance for Caregiving.
30 Schulz, R., Belle, S., Czaja, S., McGinnis, K., Stevens, A. & Zhang, S. (2004). Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 292 (8): 961-967.
31 Spector, J. & Tampi, R. (2005). Caregiver depression. Annals of Long-Term Care: Clinical Care and Aging. 13(4): 34-40.
32 Care.com and National ,Family Caregivers Association: State of Care Index. 2009
33 MetLife Caregiving Cost Study: Productivity Losses to U.S. MetLife Mature Market Institute and National Alliance for Caregiving Business. July 2006
34 MetLife Study of Working Caregivers and Employer Health Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010.
35 “Caregiving: Recognizing Burnout,” Cleveland Clinic. December 31, 2012.
36 Spillman, Brenda, and Long, Sharon, “Does High Caregiver Stress Lead to Nursing Home Entry?” Urban Institute. January 26, 2007.
37 “Home Health vs Home Care,” A Place for Mom.