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Improving Health Care Quality

Issue Briefs

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Community-Based Long-Term Services and Supports: Are the Needs of Older Adults and Their Caregivers Being Met?

daughter helps elderly mother button shirt

Abstract

  • Issue: Older Americans who need help with daily activities, such as bathing or managing medications, most often live in the community with the support of family and other unpaid caregivers. Little is understood about the adverse consequences this population suffers when no one is available to help with task-specific needs.
  • Goal: To assess the prevalence of adverse consequences due to unmet long-term services and supports (LTSS) needs. To identify whether and how caregiving characteristics are associated with adverse consequences and whether such factors differ among older adults with and without dementia.
  • Methods: We analyzed the 2017 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC).
  • Key Findings: More than four in 10 community-living older adults experienced adverse consequences due to unmet LTSS needs. Older adults with dementia, greater LTSS needs, and low incomes were more likely to experience adverse consequences. Other factors associated with a higher likelihood of adverse consequences included the number of caregivers helping an older adult.
  • Conclusions: Policies that account for the complexity of care needs among older adults living in the community with disability and better support for family and unpaid caregivers could help prevent adverse consequences.

Introduction

Most older Americans with disabilities live in the community — outside of nursing homes and residential care facilities — and receive long-term services and supports (LTSS) to assist with their daily activities, such as bathing, dressing, and meal preparation.1 For the majority of those with LTSS needs, family and other unpaid caregivers are the ones providing this help.

But Medicare does not cover LTSS beyond home health services in limited circumstances. Moreover, most older adults are not eligible for Medicaid-funded Home and Community-Based Services; those who are eligible often are placed on waiting lists for extended periods.

Among older adults with LTSS needs, the adequacy of LTSS has a profound effect on quality of life, quality of care, and services used. For example, lack of mobility assistance might mean not being unable to leave one’s home. Insufficient help with toileting could mean remaining in wet or soiled clothing or missing doses of prescribed medication. These experiences can result in falls, emergency department visits, and hospitalizations.2

Prior studies have found adverse consequences due to unmet LTSS needs are more common among older adults with greater levels of disability, those enrolled in Medicaid, and those living with dementia.3 Additionally, although a caregiver’s characteristics and circumstances might affect an older adult’s experience of unmet LTSS needs,4 it is not clear to what extent such factors differ among older adults with dementia in the community.

In this issue brief, we draw on the 2017 National Health and Aging Trends Study and linked National Study of Caregiving to update understanding of the LTSS needs among noninstitutionalized older adults and their caregiving arrangements. We also provide new insights into the caregiving circumstances and experiences of older adults with dementia, a topic relevant to policy dialogue regarding the prioritization of care-based supportive policies and practices.

Findings

Adverse Consequences Due to Unmet LTSS Needs

In the United States, 7.7 million community-living older adults received help from family and unpaid caregivers for health and functioning reasons in 2017. Two in five (42%) of these older adults were found to have experienced at least one adverse consequence due to unmet LTSS needs (Exhibit 1). Adverse consequences were most prevalent among those in worse health.

More than half of older adults living with dementia or receiving help with three or more self-care or mobility activities reported they experienced one or more adverse consequence. Living in poverty was also associated with a higher likelihood of adverse consequences.

Fabius_community_based_LTSS_exhibit_01

Family and Unpaid Caregiver Characteristics and Circumstances

Half of older adults receiving assistance with daily activities relied on help from an adult child caregiver (Exhibit 2). The highest prevalence of adverse consequences occurred in older adults receiving care from their adult children.

Older adults were no more likely to experience adverse consequences on the basis of caregiver age, gender, educational attainment, or health status.

Fabius_community_based_LTSS_exhibit_02

Size of caregiving network. The number and type of caregivers within older adults’ helping networks was also related to the likelihood of experiencing adverse consequences due to unmet need for LTSS. Older adults who experienced adverse consequences were more likely to be receiving care within larger helping networks involving both paid and unpaid help, and of high intensity (Exhibit 3). For example, the percentage of older adults who experienced adverse consequences was incrementally higher among those who relied on help from three or more caregivers (47%) relative to those receiving help from two caregivers (40%) or a single caregiver (30%).

Fabius_community_based_LTSS_exhibit_03

Intensity of care. The intensity of caregiving assistance that older adults received was also associated with adverse consequences. For instance, the percentage of older adults who experienced adverse consequences was higher among those whose caregivers were providing more than 40 hours of care per week versus less than that amount (45% vs. 39%). Hiring paid caregiving help within the past year was also associated with a greater likelihood of adverse consequences than not obtaining paid help (54% vs. 39%). Similarly, receiving caregiving help from family and friends was associated with adverse consequences more so than not getting any family caregiving support (44% vs. 35%).

Caregiving for older adults with dementia. Two factors were differentially associated with greater likelihood of adverse consequences from unmet LTSS needs by dementia status: the size of the individual’s helping network and the involvement of paid help (Exhibit 4). Among those relying on a single caregiver, more than half who had dementia experienced adverse consequences due to unmet care needs, as compared with one in four older adults without dementia (55% vs. 25%). Among older adults whose caregivers reported looking for and finding paid help, nearly two in three with dementia experienced one or more adverse consequences versus less than half of adults without dementia (65% vs. 48%).

These findings collectively highlight the complexity of factors that affect adequacy of care among older adults with significant care needs.

Fabius_community_based_LTSS_exhibit_04

Policy Implications

The past several decades have seen increasing efforts to prioritize the right of people with disabilities to live at home and in community-based settings and to promote independence, dignity, and participation through legislation such as the Supreme Court’s 1999 Olmstead decision.5 Yet despite intentions to better support older adults and their caregivers,6 we find that nearly four in 10 older adults receiving help with daily activities experienced adverse consequences due to unmet LTSS needs.

Importantly, older adults with greater cognitive and physical disabilities and with more constrained financial resources were more likely to have unmet LTSS needs. The same is true for those receiving high-intensity care from complex helping networks (such as networks comprising nonspouses and paid caregivers). Our findings also reinforce the unique care needs of older adults with dementia, which may necessitate larger helping networks and more comprehensive support.

Policies that enable older adults to remain in the community overwhelmingly align with older adult preferences7 but do not currently provide sufficient support. Increased financing for paid personal care services are needed to better address the needs of family caregivers. Reforms could include making available widespread paid family leave, respite, and wraparound services to better support the enormous contributions of family caregivers. Among older adults with cognitive and physical disabilities, paid care does not supplant unpaid caregiving but instead supplements it.8

Financing LTSS

More recent initiatives are reshaping the financing and administration of services for both older adults and family and unpaid caregivers. The Bipartisan Budget Act of 2018 enabled Medicare Advantage plans to cover costs associated with adult day services and in-home assistance.9 This expansion also includes the provision of respite care to support caregivers,10 which may help address some of the challenges described above. However, few plans have opted to offer coverage for nonmedical services, which plans provide by giving members a rebate or charging them an additional premium for the coverage. In 2021, the rebate dollars used to provide additional benefits to enrollees in Medicare Advantage plans was $140 per enrollee per month.11 However, plans use these rebate dollars to cover an array of supplemental benefits other than caregiving-related expenses as well as to lower cost sharing and premiums for members.

While the flexibilities afforded to Medicare Advantage plans through the Bipartisan Budget Act are important, they are insufficient as a broad LTSS financing strategy. That’s because the funding competes with other popular benefits, such as restrictions on enrollees’ out-of-pocket cost sharing, and because any additional LTSS benefits plans offer are limited to people enrolled in Medicare Advantage.

Other proposals to increase access and financial support for LTSS include:12

  • broader benefits and accountability for care quality through the traditional Medicare program
  • an increase in the income eligibility threshold or a buy-in option for state Medicaid Home and Community-Based Services benefits
  • the creation of a universal trust fund that could, for example, pay for a public insurance program for LTSS services.

President Biden’s American Jobs Plan proposed an infusion of $400 billion toward home and community-based services to address the needs of older adults in the community. Ultimately, however, this component was not included in the final bipartisan infrastructure proposal.

Additionally, the Food and Drug Administration’s recent approval of Aduhelm (aducanumab-avwa) to treat Alzheimer’s disease, which is listed at $56,000 per patient, has brought into sharp focus the tension between curative versus care-based efforts to attenuate the challenges of dementia for those affected by the disease. Without intervention, older adults and their caregivers will continue to experience unmet gaps in care that result in greater spending, negative health outcomes, and poor quality of life.13

A National Program to Support Paid Family Leave for Caregivers

Our results demonstrate that adult child caregivers and nonrelatives are more likely to care for older adults who experience adverse consequences due to unmet LTSS needs. Adult child and sole caregivers are especially likely to face challenges balancing caregiving with other demands, such as work and meeting the needs of their families.

Unfortunately, there have been few policy reforms designed to address the needs of caregivers, such as the National Family Caregiver Support Program (NFCSP), enacted in 2000,14 and paid family leave.15 The NFCSP’s funding, however, has been limited. And while individuals caring for persons with dementia or experiencing caregiving-related difficulties have used its services, take-up by racial and ethnic minority caregivers has been more limited.16

The combination of services provided by the NFCSP and the ability to use paid family leave as necessary would help to provide much needed relief and support to caregivers. However, to date, only nine states and Washington, D.C., have passed paid family leave policies.17 Additionally, as paid leave provides partial salary coverage for a limited time, its structure is not well suited to remediating difficulties in balancing work with episodic or protracted caregiving. This presents additional challenges for caregivers of older adults with dementia, owing to the unpredictable nature and progression of the disease.

President Biden’s American Families Plan includes the creation of a national comprehensive paid family and medical leave program. As this plan is formalized, it could include considerations for the specific challenges faced by caregivers helping people with dementia in the community and focus on methods to enable access to paid family leave, as well as strategies to provide support for caregivers helping older adults with needs that require intermittent care.

Conclusion

More older Americans are likely to require extensive medical and long-term care support in coming years. Our study highlights the complexity of LTSS needs among older adults living in the community and efforts of family caregivers to meet those needs. The findings point to two significant policy strategies — LTSS financing and a national strategy to support paid family leave for family caregivers — that together would optimize the contributions of family caregivers and outcomes for older adults living in the community.

How We Conducted This Study

This study uses data from the 2017 National Health and Aging Trends Study (NHATS) and its linked National Study of Caregiving (NSOC) to examine the extent to which adverse consequences due to unmet LTSS needs differ by characteristics of older adults and their family and unpaid caregivers. The NHATS is a longitudinal, nationally representative study of Medicare beneficiaries age 65 and older that has been conducted annually since 2011. In 2015, the sample was replenished. The NHATS oversamples black Medicare beneficiaries, as well as those at older ages. Survey weights are applied to all analyses as are variables that account for clustering in the complex survey design. Caregivers of community-living NHATS respondents (inclusive of those residing in residential care facilities) who were receiving help with mobility, self-care, or household activities for a health reason were eligible for NSOC. NHATS respondents provided names and contact information of caregivers, for which up to five were interviewed.

For this analysis, we restricted the NHATS sample to 1,530 community-dwelling older adults receiving help from family or unpaid caregivers with self-care, mobility, or household tasks (for a health reason). We limited our sample to adults age 70 and older. The NHATS study design allows estimates for age 65 and older at the initial collection year (2011) and the replenishment year (2015). For follow-up years, NHATS recommends restricting the age range to persons at least age 70 to account for sample aging. When weighted, this number corresponds to roughly 7.7 million Medicare beneficiaries.

We describe the population of community-living older adults living with disabilities and receiving help from family and unpaid caregivers by the presence of adverse consequences due to unmet LTSS needs across several characteristics, including dementia status, age group, level of assistance, Medicaid enrollment, and federal poverty level. To characterize adverse consequences due to unmet LTSS needs, participants receiving help or reporting difficulty with self-care, mobility, or household activities were asked if they had experienced a specific negative consequence because no one was available to provide help or because the activity was too difficult to perform on their own. Negative consequences included: going without clean clothes, groceries, or personal items; mishandling bills and banking matters; making a mistake taking medications; having to stay in bed; not being able to go places in their home or building; going without eating or without showering, bathing, or washing up; accidentally wetting or soiling their clothes; and being unable to get dressed. Dementia status refers to the categorization of probable dementia, which is determined by self-report or by participant or proxy evaluation of memory, orientation, judgment, and function.18

Next, we describe whether caregivers are helping an older adult with any adverse consequences of unmet care needs across caregiver sociodemographic characteristics and circumstances. Caregiving circumstances include the number of caregivers per older adult, number of hours of care provided per week, receipt of paid help, assistance from family or unpaid caregivers, and caregiver employment status.

NOTES

  1. Vicki A. Freedman and Brenda C. Spillman, “Disability and Care Needs Among Older Americans,” Milbank Quarterly 92, no. 3 (Sept. 2014): 509–41.
  2. Zach Hass et al., “Unmet Need for Help with Activities of Daily Living Disabilities and Emergency Department Admissions Among Older Medicare Recipients,” Gerontologist 57, no. 2 (Apr. 2017): 206–10; Mitchell P. LaPlante et al., “Unmet Need for Personal Assistance Services: Estimating the Shortfall in Hours of Help and Adverse Consequences,” Journals of Gerontology — Series B: Psychological Sciences/Social Sciences 59, no. 2 (Mar. 2004): S98–S108; and Laura P. Sands et al., “Rates of Acute Care Admissions for Frail Older People Living with Met Versus Unmet Activity of Daily Living Needs,” Journal of the American Geriatrics Society 54, no. 2 (Feb. 2006): 339–44.
  3. Amber Willink et al., Are Older Americans Getting the Long-Term Services and Supports They Need? (Commonwealth Fund, Jan. 2019); Amber Willink et al., The Financial Hardship Faced by Older Americans Needing Long-Term Services and Supports (Commonwealth Fund, Jan. 2019); and Betty S. Black et al., “Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study,” Journal of the American Geriatrics Society 61, no. 12 (Dec. 2013): 2087–95.
  4. Scott R. Beach and Richard Schulz, “Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults,” Journal of the American Geriatrics Society 65, no. 3 (Mar. 2017): 560–66.
  5. U.S. Department of Health and Human Services, “State Medicaid Director Letter — Guidance on Olmstead Decision and Fact Sheet,” Jan. 14, 2000.
  6. Lynn Friss Feinberg and Sandra L. Newman, “A Study of 10 States Since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development,” Gerontologist 44, no. 6 (Dec. 2004): 760–69; and Jennifer Ryan and Barbara Coulter Edwards, Rebalancing Medicaid Long-Term Services and Supports, Health Policy Brief (Health Affairs, Sept. 17, 2015).
  7. Julie Robison et al., “Long-Term Supports and Services Planning for the Future: Implications from a Statewide Survey of Baby Boomers and Older Adults,” Gerontologist 54, no. 2 (Apr. 2014): 297–313.
  8. Amber Willink et al., Use of Paid and Unpaid Personal Help by Medicare Beneficiaries Needing Long-Term Services and Supports, (Commonwealth Fund, Nov, 2017); National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America. (National Academies Press, 2016); and Kaitlyn Whiton and Ian Stockwell, Community First Choice Implementation in Maryland, 2014–2016 (The Hilltop Institute, Sept. 2017).
  9. Pedro L. Alcocer, Robert Eaton, and Pamela Laboy, LTSS Services in Medicare Advantage Plans: The 2019 Market Landscape and the Challenge Ahead (Milliman, Feb. 12, 2019); and Amber Willink and Eva H. DuGoff, “Integrating Medical and Nonmedical Services — The Promise and Pitfalls of the CHRONIC Care Act,” New England Journal of Medicine 378, no. 23 (June 7, 2018): 2153–55.
  10. Alcocer, Eaton, and Laboy, LTSS Services in Medicare Advantage, 2019.
  11. Medicare Payment Advisory Commission, Report to the Congress: Medicare Payment Policy (MedPAC, Mar. 2021).
  12. Karen Davis, Amber Willink, and Cathy Schoen, “Integrated Care Organizations: Medicare Financing for Care at Home,” American Journal of Managed Care 22, no. 11 (Nov. 2016): 765–68; Bipartisan Policy Center, Key Considerations for Developing Medicaid Home and Community-Based Services Benefit (BPC, June 2021); and Marc Cohen, Judith Feder, and Melissa M. Favreault, A New Public–Private Partnership: Catastrophic Public and Front-End Private LTC Insurance (Urban Institute, Feb. 2018).
  13. Jennifer L. Wolff et al., “Medicare Spending and the Adequacy of Support with Daily Activities in Community-Living Older Adults with Disability,” Annals of Internal Medicine, 170, no. 12 (June 2018): 837–44; Hass et al., “Unmet Need for Help,” 2017; LaPlante et al., “Unmet Need for Personal Assistance Services,” 2004; and Sands et al., “Rates of Acute Care Admissions,” 2006.
  14. Feinberg and Newman, “Study of 10 States,” 2004.
  15. Lynn Friss Feinberg, “Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults,” Journal of the American Geriatrics Society 67, no. 7 (July 2019): 1336–41. The NFCSP provides grants to states to support family caregivers in five areas: information services; access assistance; counseling, support groups, or training; respite care; and supplemental services; see Feinberg and Newman, “Study of 10 States,” 2004.
  16. Cecelia Avison et al., Outcome Evaluation of the National Family Caregiver Support Program (Westat, Dec. 5, 2018); and Charlene A. Liggins, “National Family Caregiver Support Program (NFCSP): Assessing Clients’ Characteristics, Program Utilization, and Difficulty Accessing Services” (doctoral dissertation, Johns Hopkins University, 2018).
  17. A Better Balance, “Comparative Chart of Paid Family and Medical Leave Laws in the United States,” Nov. 1, 2015; updated Oct. 5, 2021; and Feinberg, “Paid Family Leave,” 2019.
  18. Judith D. Kasper, Vicki A. Freedman, and Brenda C. Spillman, Classification of Persons by Dementia Status in the National Health and Aging Trends Study, NHATS Technical Paper No. 5 (NHATS, July 2013).

Publication Details

Date

Contact

Chanee D. Fabius, Assistant Professor, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health

Citation

Chanee D. Fabius et al., Community-Based Long-Term Services and Supports: Are the Needs of Older Adults and Their Caregivers Being Met? (Commonwealth Fund, Oct. 2021). https://doi.org/10.26099/b4c0-n470