CDC Caregiving Activities
Promoting the Health and Well-being of Caregivers for Older Adults
In 2009, a question about caregiving was added to the annual Behavioral Risk Factor Surveillance System (BRFSS) survey in all 50 states and the District of Columbia. About 25% of participants answered “Yes” to the question: “People may provide regular care or assistance to a friend or family member who has a health problem, long-term illness, or disability. During the past month, did you provide any such care or assistance to a friend or family member?”
Between 2011 and 2013, the following states added the 10-item Caregiver Module to their Behavioral Risk Factor Surveillance System (BRFSS) survey.
In 2014, no states asked questions about caregiving on their BRFSS survey.
- 2011: North Carolina, Tennessee
- 2012: California, Georgia, Indiana, Iowa, Maine, Mississippi, Missouri, Oregon, West Virginia, Wisconsin
- 2013: Arkansas, Illinois, Oregon
- 2014: No states
Starting in 2015, states can add the revised 8-item Caregiving module to their BRFSS survey. This module will allow states to understand the:
- Percentage of people who self-report as being a caregiver
- Relationship between the caregiver and the care recipient
- Average hours of caregiving per week
- Types of assistance needed by the care recipient
- Major health problem, long-term illness, or disability of the care recipient
- Length of time as a caregiving
- Type of assistance most needed by the caregiver
- Percentage of adults aged 18 years or older who are not caregivers who expect to be caregivers in the future
More information about the BRFSS Caregiving module can be found at: http://www.cdc.gov/aging/healthybrain/brfss-faq-caregiver.htm
In partnership with the Alzheimer’s Association, several states used data from their state’s BRFSS survey to identify challenges faced by caregivers of persons with Alzheimer’s disease or another form of dementia. The following Regional Caregiving Reports were produced:
- Illinois, Louisiana, Ohio, and the District of Columbia [PDF-813K], 2009
- Connecticut, New Hampshire, New Jersey, New York, and Tennessee [PDF-326K], 2010
- States and the District of Columbia, 2009-2010 Combined [PDF-353K]
For additional reports and fact sheets using the BRFSS Caregiver Module, visit: http://www.alz.org/publichealth/data-collection.asp#caregiver
Implementing a Community-Based Program for Dementia Caregivers: An Action Guide using REACH OUT [PDF-7.4M], provides a step-by-step approach to using REACH OUT in communities of varying size and composition. REACH OUT is an evidence-based caregiver support system designed to promote the health and well-being of adults caring for persons with dementia. The Action Guide provides relevant examples, tips, resources, Web sites and additional references to bolster your understanding of the intervention and its translation in a community setting. Much of what appears in the Action Guide can be applied to other evidence-based programs and is intended to facilitate expansion of caregiver interventions and promote their adoption into widespread practice. The Action Guide was developed in collaboration with the University of Michigan’s Institute of Gerontology, the Centers for Disease Control and Prevention, and the National Association of Chronic Disease Directors.
The prevalence of caregivers in the AI/AN population is greater than that the general U.S. population (McGuire, 2008). Like many people of all racial/ethnic groups AI/AN families want to care for their elders and the elders want to remain in their homes and have family care for them as long as possible
One concern for AI/AN communities is that there is an out-migration from the reservations to urban areas for jobs leaving a potentially smaller pool of prospective caregivers. Garrett and colleagues developed the Caregiver Ratio Index (CRI), which is an algorithm that defines how many potential caregivers exist for every frail elder by tribe. The higher the CRI the higher the number of potential caregivers there are to each frail elder.
For the American Indian/Alaskan Native (AI/AN) population, taking care of an elder is a continuation of an ancient custom of extended family and lifelong care for family. Indian family caregivers are similar to non-Indian caregivers in many ways; however, the resources available to them are much more limited than for non-Indian caregivers. In addition, eligibility criteria for long-term care services are often couched in language that is not culturally sensitive. Surveys show AI/AN families would like training on how to take care of an older adult, help to coordinate care and navigate the health system, respite care and adult day care to give the caregiver a break, support groups, and more services for their care recipient. This Critical Issue Brief, Caregiving in Indian Country: Tribes Supporting Family Traditions [PDF-303K], looks at caregiving issues in Indian country and the support systems that can maintain this traditional family value.
Anderson, L.A., Edwards, V. J., Pearson, W. S., Talley, R. C., McGuire, L.C., & Andresen, E. M. Adult caregivers in the United States: Characteristics and differences by well-being, by caregiver age and caregiving status. (2013). Preventing Chronic Disease, 10, 45-50.
Alzheimer’s Association and Centers for Disease Control and Prevention. The Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map: Chicago, IL: Alzheimer’s Association; 2018. https://www.cdc.gov/aging/pdf/2018-2023-Road-Map-508.pdf [PDF-2.2M]
DeFries, E.L., McGuire, L.C., Andresen, E.M., Brumback, B.A., & Anderson, L.A. (2009). Caregivers of Older Adults with Cognitive Impairment. Preventing Chronic Disease, 6(2), http://www.cdc.gov/pcd/issues/2009/apr/08_0088.htm.
Garrett, M.D., Baldridge, D., Benson, W.F., & McGuire, L.C. (2008). Missing Cohorts of Caregivers Among American Indian and Alaska Native Communities. The IHS Primary Care Provider, 33(4), 105-111.
Garrett, M.D., & McGuire, L.C. (2008). American Indian/Alaska Native Communities Face Aging with Fewer Caregivers. Aging Today, 29(6), 11.
McGuire, L.C., Okoro, C.A., Goins, R.T., & Anderson, L.A. (2008).Characteristics of American Indian and Alaska Native Adult Caregivers, Behavioral Risk Factor Surveillance System, 2000. Ethnicity & Disease, 18, 477-482.
Okoro, C.A., Denny, C.H., McGuire, L.C., Balluz, L.S., Goins, R.T., & Mokdad, A.H. (2007). Disability Among Older American Indians and Alaska Natives: Disparities in Prevalence, Health-Risk Behaviors, Obesity, and Chronic Conditions. Ethnicity & Disease, 17(4), 686-692.
- Page last reviewed: November 3, 2018
- Page last updated: November 3, 2018
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