Respite Care, Probably Not What You Imagine

Respite care has been proven valuable to caregivers, though often it is not what caregivers assume and fails lofty expectations.

Helpful Highlights

  • Research has found that caregivers benefit from respite care.

  • Respite care is often not what caregivers imagine and when perception meets reality, expectations fail.

  • Planning for respite care, managing expectations, and learning to pair respite care with other services and assistance, however, can help you achieve relief.

  • There are three essentials for managing expectations around respite care.

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Caregivers, especially those who reside with their loved ones, or who dedicate more than 20 hours per week to providing direct care, get exhausted. This leads to frustration, irritability, lack of sleep, improper diet, disorganization in other parts of their lives, and often - anxiety and depression.

Caregivers need a break, or "respite", which research has found beneficial to the caregiver. Therefore, the care provided to their loved one during that time is called "respite care." We have all heard the term, though few of us have a thorough understanding of what it entails.

Respite care findings

Research has shown that respite care improves caregivers' physical and emotional well-being, whereby caregivers report feeling refreshed and ready to re-engage in caring for their loved one following respite. Care recipients also report positive changes in their caregivers following respite.

Therefore, you need to have sufficient and regular amounts of respite time, and with that, give careful thought to how you want to spend your respite time. Respite must be meaningful and purposeful to fulfill your needs and plans, coupled with the confidence that your loved one is safe and satisfied during your time away.

What caregivers think they're going to get with respite care

Caregivers, without any prior knowledge or research, tend to have a rather dreamy assumption of what respite care is going to do for them and this is often why it fails their expectations.

Caregivers hear "respite care" and imagine they're going to get care that is:

  • Foremost, paid for by insurance.

  • Provided by home health professionals (nurses, CNAs, home health aides).

  • Provided in the home.

  • 24 hours a day.

  • Easy to arrange.

  • Complete, including medication administration, wound care, and other medical/nursing tasks, personal care, homemaking, errands, and companionship.

What respite care actually entails

However, caregiver perceptions of respite care are not reality. Respite care, in the traditional sense, is the opposite of nearly every expectation bulleted above. It is only paid for in special circumstances (like hospice), it is often not provided in the home, and it is not necessarily easy to arrange.

But... If this is the case, then why should I bother with respite care at all?

Well, foremost, because it benefits you, as previously discussed. And because respite care as it is strictly defined by the Centers for Medicare and Medicaid is not the only type of respite care available! With adequate planning and a change of mindset, respite care can successfully bring much-deserved and much-needed relief.

Planning for respite care

It is most important that you plan ahead for respite care, meaning that you should consider respite services much earlier than you think you will need them - before you become exhausted, isolated, and overwhelmed by your responsibilities. Respite will be most helpful if you approach it as an early identification and early intervention tool.

As a caregiver, you may feel like you should be able to do it all, though seeking help does not make you a failure! It's important to remember that respite services benefit your loved one as well as yourself and everyone around you.

The Alzheimer's Association offers an excellent resource for helping to determine what may benefit you most: Respite Care Guide: Finding What's Best for You.

Respite is most effective when combined with other services and assistance (financial support, education, emotional and social support), but don't wait till you have a comprehensive package coordinated to take a break. Before securing those services, respite will give you a chance to step back, take stock, and recharge.

Managing respite care expectations

Probably the three most important things to keep in mind that will help you manage respite care expectations and avoid disappointment are:

  1. Respite care will likely not be covered by your loved one's insurance, or at least not entirely (exceptions are special circumstances).

  2. Respite care is any time you are relieved of caregiving responsibilities (to help reframe your way of thinking about this, see our guide, Respite by Definition is Rest).

  3. Know that those who work for an agency or care community should be reliable and well-trained and are often certified. Your loved one will be safe and cared for during respite.

Paying for respite

You may be concerned about how to pay for respite care if your loved one's insurance does not. Take a look at our guide, Sources for Respite Care Coverage, to start. Some available sources may surprise you.

Average costs of different types of respite care according to the 2021 Aging & You Genworth survey:

  • Short-term, on-demand services like adult day care are the least expensive, with costs averaging $74 a day nationally.

  • Assisted living facilities are the next most affordable option, averaging $141 a day.

  • In-home care is the most expensive option, averaging $150 a day for a home health aide.

RESOURCES

American Hospice Foundation

ARCH - Planning for Respite

ARCH - Time for Living and Caring: Making Respite Services Work for You!

Duan-Porter, W., Ullman, K., Rosebuch, C., McKenzie, L., Ensrud, K.E., Ratner, E., Greer, N., Shippee, T., Gaugler, J.E., & Wilt, T.J. (2020). Interventions to prevent or delay long-term nursing home placement for adults with impairments—A systematic review of reviews. Journal of General Internal Medicine, 35(7), 2118-2129. DOI

Forbes Health

Hall, S., Rogatinsky, N., Holtslander, L., & Peacock, S. (2022). Caregivers to older adults require support: A scoping review of their priorities. Health and Social Care in the Community, 30(6), e3789-e3809. DOI

Kokorelias, K.M., Lu, F.K.T., Santos, J.R., Leung, R., & Cameron, J.I. (2019). “Caregiving is a full-time job” impacting stroke caregivers' health and well-being: A qualitative meta-synthesis. Health and Social Care in the Community, 28(2), 325-340. DOI

Neville, C., Beattie, E., Fielding, E., & MacAndrew, M. (2014). Literature review: Use of respite by carers of people with dementia. Health and Social Care in the Community, 23(1), 51-63. DOI

O'Shea, Em., Timmons, S., O'Shea, Ea., Fox, S., Irving, K. (2017). Key stakeholders’ experiences of respite services for people with dementia and their perspectives on respite service development: A qualitative systematic review. BMC Geriatrics, 17, 282. Link

Tretteteig, S., Vatne, S., & Mork Rokstad, A.M. (2016). The influence of day care centres for people with dementia on family caregivers: An integrative review of the literature. Aging and Mental Health, 20(5). DOI

Wakefield, C.J. (2020). Community respite service utilisation and dementia care: A review of literature. Australian Journal of Advanced Nursing, 37(2). DOI

Walter, E., & Pinquart, M. (2020). How effective are dementia caregiver interventions? An updated comprehensive meta-analysis. The Gerontologist, 60(8), e609-e619. DOI

No content in this app, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.

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