Skip to main content
NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2022 Apr 29.
Published in final edited form as: J Am Med Dir Assoc. 2021 Dec 28;23(2):320–321. doi: 10.1016/j.jamda.2021.12.020

Caregiver Respite: An Essential Component of Home & Community-Based Long-Term Care

Rebecca L Utz 1
PMCID: PMC9052870  NIHMSID: NIHMS1798529  PMID: 34971592

One in five U.S adults (53 million people) provide long-term care to persons who are aging, disabled, and chronically ill.1 This informal workforce – referred to as family caregivers –perform medical tasks, help with activities of daily living, prepare meals, provide transportation, manage finances, coordinate care, and support the psychosocial needs of patients living in their homes and in our communities.2 The average family caregiver provides 24 hours of direct-care per week for about 4.5 years.1 They are generally unpaid, yet their services do not come for free: caregivers commonly experience care-related declines in their physical, mental, social, and/or financial health.3 The economic value of family caregiving is estimated at nearly $500 billion annually, an amount that surpasses out-of-pocket and federal spending on long-term care.4

Given this, caregiver support is increasingly viewed as an essential component of the long-term services and supports (LTSS) system.5 Traditional caregiver support includes education and skills-training interventions, support groups, and respite.6 Respite - defined by ARCH National Respite Network and Resource Center as “planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers” (www.archrespite.org) - is the most desired and requested caregiver service.7,8 There are three type of formal respite services: 1) in-home respite agencies, 2) adult day centers, and 3) institutional respite that allows for planned or emergency overnight stays.

When provided consistently and in sufficient doses, respite is associated with positive outcomes for both patient and caregiver (e.g., reduced hospitalization, delayed institutionalization, reduced caregiver burden).9 Yet, 85% of caregivers do not utilize formal respite services,1 likely because of lengthy waitlists, inability to pay out-of-pocket, or a general lack of awareness of respite services or their potential benefit. Instead, family caregivers often prefer to use tag-teaming arrangements with friends, families, or neighbors whose occasional assistance provides informal respite to the primary caregiver.

During the COVID-19 pandemic, as businesses shutdown and as travel and in-person social interactions became restricted, both formal respite services and informal respite arrangements became inaccessible to caregivers. These disruptions led to increased reports of stress, anxiety, feelings of burden, and social isolation among family caregivers.10 In fact, the loss of planned respite and an unfulfilled desire for a “short break” was lamented by many caregivers as the greatest challenge of the COVID-19 pandemic, further highlighting the importance of respite as an essential, preventive strategy to help caregivers manage the often relentless 24/7 nature of caregiving responsibilities.

Some formal respite providers quickly pivoted and began offering new types of respite services - for example, adult day centers used video-conferencing (e.g., Zoom), where care-recipients received real-time supervision from an offsite respite provider via an interactive computer screen. Others assembled virtual respite programs or delivered “respite in a box” which included curated activities to do at home or links to virtual field-trips to art museums or recorded concerts.

Caregivers also developed creative solutions, especially when they were granted enhanced flexibility to use their Medicaid home- and community-based services waiver to meet their respite needs – for example, some utilized video-gaming systems to connect with geographically-distant family members, some chose to pay family members to tag-team one another rather than bringing in outside help, and one caregiver purchased a trampoline for her autistic child, which provided both mother and child hours of activity/break that were previously not available. These strategies provided diversionary and meaningful activities that temporarily entertained and engaged care-recipients, while providing caregivers a break from caregiving responsibilities, even when a physical or formal break was not possible.

Evaluating the effectiveness, usability, and feasibility of these new forms of respite should be a research priority. Results could inform new models of caregiver respite that are more aligned with individual need and choice and less reliant on the narrow definition of respite as a formal service provided to caregivers. These innovations may be particularly useful in light of the ongoing labor shortages plaguing the delivery of traditional LTSS. While the COVID-19 pandemic severely reduced access to respite which increased caregiver stress, it also provided some potential innovations that could become more mainstream as we move into a post-COVID world and as we strive to achieve President Biden’s National Strategy for Family Caregiving.

References

  • 1.AARP & National Alliance for Caregiving. Caregiving in the U.S. 2020 Report. AARP & NAC: Washington, D.C.; 2020. [Google Scholar]
  • 2.Schulz R, Beach SR, Czaja SJ, Martire LM, Monin JK. Family Caregiving for Older Adults. Article. Annual Review of Psychology. 2020;71:635–659. doi: 10.1146/annurev-psych-010419-050754 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 3.Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver Burden. Article. JAMA: Journal of the American Medical Association. 2014;311(10):1052–1059. doi: 10.1001/jama.2014.304 [DOI] [PubMed] [Google Scholar]
  • 4.Reinhard SC, Friss-Feinber L, Houser A, Choula R, Evans M. Valuing the Invaluable: 2019 Update - Charting a Path Forward. Report. Washington, D.C.: AARP Public Policy INstitute. November 2019. 10.26419/ppi.00082.003 [DOI] [Google Scholar]
  • 5.Kaye HS. Toward a Model Long-Term Services and Supports System: State Policy Elements. Article. Gerontologist. 2014;54(5):754–761. doi: 10.1093/geront/gnu013 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 6.Ying J, Wang Y, Zhang M, et al. Effect of multicomponent interventions on competence of family caregivers of people with dementia: A systematic review. Article. Journal of Clinical Nursing. 2018;27(9–10):1744–1758. doi: 10.1111/jocn.14326 [DOI] [PubMed] [Google Scholar]
  • 7.Link G The Administration for Community Living: Programs and Initiatives Providing Family Caregiver Support. Article. Generations. Winter2015/2016 2015;39(4):57–63. [Google Scholar]
  • 8.ARCH National Respite Network and Resource Center. A Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocated, and Funders. Washington, D. C.: ARCH National Respite Network & Resource Center; 2015. [Google Scholar]
  • 9.Zarit SH, Bangerter LR, Liu Y, Rovine MJ. Exploring the benefits of respite services to family caregivers: methodological issues and current findings. Aging Ment Health. Mar 2017;21(3):224–231. doi: 10.1080/13607863.2015.1128881 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Beach SR, Schulz R, Donovan H, Rosland AM. Family Caregiving During the COVID-19 Pandemic. Article. The Gerontologist. 2021; 61(5): 650–660. 10.1093/geront/gnab049 [DOI] [PMC free article] [PubMed] [Google Scholar]

RESOURCES