How many family caregivers are there in the U.S.? Are there 22.4 million, 25 million, 52 million or 54 million? What is the origin of the disparity between these numbers? The reality is that they are all correct in the context of the information presented and the process of data collection and reporting that was utilized. The population surveyed, the order in which questions are asked or phrased all have an impact on the final outcomes. That is why it is important to understand the differences. The following explanation is not an exhaustive analysis of the differences between recent surveys of family caregivers, but rather a description of the different approaches and populations surveyed. The descriptions presented have all been reviewed for accuracy.
In 1997, the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP) published its landmark report — Caregiving in the US. This widely referenced report documented that there were 22.4 million households involved in caregiving in the US at that time.
The definition of Caregiving in this random sample research effort includes:
- Caring for persons over the age of 50
- Occurring some time within the past 12 months
- Including ADL's (Activities of Daily Living) and IADL's (Instrumental Activities of Daily Living)
In 1998, Peter Arno Ph.D. and others published information on the market value of caregiver services. The estimate of $196 billion/year in caregiver contributions for (unpaid) labor and services has been widely quoted.
To develop this valuation, Dr. Arno needed to determine the number of individual caregivers, as opposed to households in the US. He based his mid-range estimate of 25.8 million caregivers on data from the National Survey of Families and Households (NSFH) for 1987 and 1988 and the Survey of Income and Program Participation (SIPP) for 1986. These data were projected forward to 1997. The definitions of Caregiving in these surveys include:
- Caring for persons at least 15 years of age (SIPP) or 18 years of age (NSFH)
- Providing personal care
- Needing assistance because of a health condition (SIPP) or disability or chronic illness (NSFH)
Also in 1998, The Assistant Secretary for Planning and Evaluation (ASPE) and the Administration on Aging of the U.S. Department of Health and Human Services published, Informal Caregiving: Compassion in Action. The data analysis had two parts. Part I analyzed data on "informal" care from the National Survey of Families and Households, NSFH (1987 and 1992). This analysis resulted in an estimate of 52 million Americans (31% of the adult population age 20-75) who during the course of any year provide unpaid care to a family member or friend who is ill or disabled. Part II looked at a more specific population of caregivers, namely chronically disabled elders. The analyzed data for Part I of the study includes:
- Caring for persons of all ages
- Providing unpaid care which was defined very broadly to include any and all types of assistance
- Short or long-term care
Most recently in the summer of 2000, the National Family Caregivers Association published a report representing that during the past year 54 million people had been involved in some level of caregiving. The number, slightly greater than US government estimate, was based on random sample survey research. The definition of caregiving used in this research effort, which asked questions of adults over the age of 18, included:
- Caring for persons of all ages
- Providing care (interpretation of the term care was left to the respondent)
- Occurring some time within the past 12 months
- Care was necessitated because of a disability or chronic illness or consequences of old age
Bruskin Research, the firm that conducted the survey for NFCA, utilized a custom-designed computer program that automatically develops a weighting factor for each respondent thereby allowing survey results to be generalized to the population as a whole.
This explanation was prepared by: Suzanne Mintz — President/Co-founder, National Family Caregivers Association and Connie Ford, RN, MPA — Caregiver/Caregiving Consultant.
For copies of the reports referenced above contact:
Caregiving in the US
National Alliance for Caregiving
4720 Montgomery Lane
Bethesda, MD 20814
301-718-8444
lesplooster.nac@erols.com
The Economic Value of Informal Caregiving
United Hospital Fund of New York
350 Fifth Avenue — Empire State Bldg.
New York, New York 10118
212-494-0700
clevine@uhfnyc.org
Informal Caregiving: Compassion in Action
US Dept of Health and Human Services
Office of the Assist Secretary for Planning and Evaluation
200 Independence Avenue SW
Washington, DC 20201
202-690-6172
pdoty@osaspe.dhhs.gov
NFCA Survey 2000
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
301-942 6430 / 800-896-3650
info@thefamilycaregiver.org
www.thefamilycaregiver.org