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Figure.
Adjusted Frequency of Caregiver Assistance for Homebound Functionally Disabled People Older Than 55 Years, 1998-2012
Adjusted Frequency of Caregiver Assistance for Homebound Functionally Disabled People Older Than 55 Years, 1998-2012

Error bars indicate 95% CIs.

Table.  
Weighted Percentage of Caregiver Assistance and Temporal Trends From 1998-2012 for Home-Dwelling, Functionally Disabled People Older Than 55 Years (N = 39 060)a
Weighted Percentage of Caregiver Assistance and Temporal Trends From 1998-2012 for Home-Dwelling, Functionally Disabled People Older Than 55 Years (N = 39 060)a
1.
Lynn  J.  Living long in fragile health. Hastings Cent Rep. 2005;(Spec No):S14-S18.PubMed
2.
Knickman  JR, Snell  EK.  The 2030 problem. Health Serv Res. 2002;37(4):849-884.PubMedArticle
3.
Sonnega  A, Faul  JD, Ofstedal  MB, Langa  KM, Phillips  JWR, Weir  DR.  Cohort profile. Int J Epidemiol. 2014;43(2):576-585.PubMedArticle
4.
Ornstein  KA, Leff  B, Covinsky  KE,  et al.  Epidemiology of the homebound population in the United States. JAMA Intern Med. 2015;175(7):1180-1186.PubMedArticle
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Research Letter
July 12, 2016

Trends in Caregiving Assistance for Home-Dwelling, Functionally Impaired Older Adults in the United States, 1998-2012

Author Affiliations
  • 1Robert Wood Johnson Foundation Clinical Scholars Program, University of Michigan, Ann Arbor
  • 2Department of Internal Medicine, University of Michigan Medical School, Ann Arbor
JAMA. 2016;316(2):218-220. doi:10.1001/jama.2016.6824

As more people in the United States age with chronic disease,1 needs for caregiving increase.2 Whether the source of caregiving for disabled older adults is changing is unknown. This study examined temporal trends in caregiving for home-dwelling older adults with functional disability.

Methods

This study was determined by the University of Michigan institutional review board to be exempt from review. All participants provided informed oral consent. This study used data from the nationally representative US Health and Retirement Study,3 a longitudinal panel survey of a multistage probability sample of households with adults 51 years and older with follow-up every 2 years and new panels enrolled every 6 years. Interviews were in-person or by telephone; the initial response rates were 79% and follow-up rates were 85% to 91%. For this study, home-dwelling adults 55 years and older with 1 or more impairments in activities of daily living or instrumental activities of daily living (ADL/IADLs) surveyed between 1998 and 2012 were included. Primary outcome was caregiving source for unpaid or paid assistance with impairments. Logistic regression was used to measure temporal trends in demographics, comorbidities, and caregiver type with study wave as the primary independent variable. Trends in caregiver types were compared by demographic subsets. All models were adjusted for survey weighting and design (see Table for list of variables) as well as respondent repeated measures. Analysis was performed using Stata (StataCorp), version 14.0; a 2-sided P value less than .05 was considered significant.

Results

There were 5198 individuals and 39 060 observations of home-dwelling older adults with 1 or more impairments (mean age, 72.8 years [SD, 10.5]; women, 54.3%; white, 77.3%; mean net worth, $341 490 [SD, $9865]; high school graduates, 68.0%; mean impairments, 2.70 [SD, 0.02]). From 1998 to 2012, the cohort had significantly more women (52.4% to 53.7%), fewer white individuals (85.4% to 78.9%), greater net worth ($262 917 to $350 676), more high school graduates (59.6% to 75.0%), more ADL/IADL impairments (2.74 to 2.85), and higher rates of multiple self-reported medical conditions, notably diabetes (20.0% to 31.6%) and cancer (14.5% to 21.3%).

Individuals increasingly reported caregiver help, from 42.1% (95% CI, 40.9%-43.3%) in 1998 to 49.8% (95% CI, 48.4%-51.2%) in 2012 (P < .001) (Figure). Assistance was increasingly provided by spouses (odds ratio [OR], 1.05 [95% CI, 1.03-1.06]), children (OR, 1.04 [95% CI, 1.02-1.05]), other family (OR, 1.06 [95% CI, 1.04-1.09]), and paid caregivers (OR, 1.10 [95% CI, 1.07-1.13]) over each 2-year period (Table). Within subgroups, the increase in caregiving with every biennial survey wave was greater for those with fewer ADL/IADL impairments (P for trend = .03) and men (P for trend <.001). In addition, increases in paid caregiving were greater for those with net worth above the mean (P for trend = .01) and a high school diploma (P for trend = .003).

Discussion

From 1998 to 2012, the percentage of home-dwelling functionally disabled older adults in the United States receiving caregiver assistance increased to more than 50%. This increased assistance came from multiple sources, including spouses, children, family, and paid caregivers. This study adds to others4 by demonstrating increasing rates of caregiver assistance that differed across demographic groups.

The greatest increase in caregiving was among those with fewer ADL and IADL impairments. Although this is likely in part because those with more impairments have already sought caregivers, it may also be that more adults with 1 or 2 impairments are aging in their communities as opposed to nursing homes. Further work is needed to examine this trend.

This study needs to be interpreted in light of a number of limitations. It relied on self-reported data to assess functional needs and caregiving. Caregiving was measured as ADL and IADL assistance, which is a limited view of the types of help that caregivers provide. We did not have the power to examine the drivers of these trends (such as population changes in illness, insurance, financial resources, social service availability, and social networks), nor to detect differences between subgroups for those receiving paid or unpaid care. Further work is needed to assess the balance between functional needs in the population and capacity for caregiver support, as well as the burden on unpaid caregivers.

Section Editor: Jody W. Zylke, MD, Deputy Editor.
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Article Information

Corresponding Author: Claire K. Ankuda, MD, MPH, Robert Wood Johnson Foundation Clinical Scholars Program, University of Michigan, 2800 Plymouth Rd, Bldg 10, Room G016, Ann Arbor, MI 48109-2800 (cankuda@umich.edu).

Author Contributions: Dr Ankuda had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Ankuda.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Ankuda.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Ankuda.

Administrative, technical, or material support: Levine.

Study supervision: Levine.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.

Funding/Support: This work is funded by grants K23AG040278 and U01 AG09740 from the National Institute on Aging (Dr Levine) and the Robert Wood Johnson Foundation (Dr Ankuda). The Health and Retirement Study is funded by the National Institute on Aging (U01 AG009740), and performed at the Institute for Social Research, University of Michigan. Select variables were derived from the RAND HRS Data file, which is a longitudinal data set based on the HRS data. It was developed at RAND with funding from the National Institute on Aging and the US Social Security Administration.

Role of the Funder/Sponsor: The funders had no role in design and conduct of the study; collection, management, analysis, or interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

References
1.
Lynn  J.  Living long in fragile health. Hastings Cent Rep. 2005;(Spec No):S14-S18.PubMed
2.
Knickman  JR, Snell  EK.  The 2030 problem. Health Serv Res. 2002;37(4):849-884.PubMedArticle
3.
Sonnega  A, Faul  JD, Ofstedal  MB, Langa  KM, Phillips  JWR, Weir  DR.  Cohort profile. Int J Epidemiol. 2014;43(2):576-585.PubMedArticle
4.
Ornstein  KA, Leff  B, Covinsky  KE,  et al.  Epidemiology of the homebound population in the United States. JAMA Intern Med. 2015;175(7):1180-1186.PubMedArticle
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