Much has been written about the stress of caregiving and the toll it takes on those who do it.  According to a 2018 study from insurance firm Genworth, 40% of caregivers “experienced depression, mood swings and resentment as a result of their labors.”  

Respite care services can offer much-needed relief for this population of caregivers who are struggling, yet a very small portion uses them. What are some ways that more caregivers can take advantage of these helpful services?

Stress of Caregiving

The stress and negative emotions that can build up from caregiving have a negative impact on the caregiver, their family, and even the one receiving care. One of the most tangible signs is the impact on the caregiver’s immune system. Research cited by the American Psychological Association found that among caregivers age 55 to 75, there was  “a 15 percent lower level of immune response, making them more vulnerable to the flu and other infections.” That means caregivers are more likely to get sick themselves, which renders them even less effective in their caring for the person they love.

The feelings of resentment and guilt also weigh heavily on caregivers, especially those who were doing it alone because other family refused to assist. A qualitative study from the NIH reported that:

“While these caregivers made clear their strong desire to continue to help the care recipient, the strain of caregiving often left them with a range of negative emotions. Many reported feelings of guilt for wanting relief from their caregiving duties and several described the circumstances around the initiation of their caregiving role. In many cases, the role was relegated to them by other family members, as it had been taken for granted that they would be best in the role due to their proximity or relationship with the care recipient.”

Many caregivers desire some relief and some help, yet, only 14% of caregivers take advantage of respite care. Respite care is short-term help either with caregiving duties for the care recipient or other responsibilities a caregiver has (such as household chores).  There are a variety of respite care services, including Adult Day Care Center and in-home care service providers. 

The benefits of respite care are clear. For anyone who is tending to a loved one, it’s an always-on role. Even if the caregiver doesn’t live with the care recipient, he or she is on-call at all times.

So why don’t more caregivers take advantage of respite services?

Barriers to Respite Care

At first, it might seem that financial reasons play a big part. For some families, that is the case. Overall, the decreased health that comes along with aging becomes expensive (more medications, more doctor visits, etc.), so what funds are left in retirement have to be distributed even more thinly.

While many states provide Waiver Services Vouchers, the funding for those often runs out quickly. There are other government assistance programs, such as the VA Aid & Attendance Benefit, as well as long-term care insurance, that can help with the costs of services. However, most families have to do some financial juggling to make the numbers work.

Aside from financial reasons, another factor is lack of awareness. The NIH study found that many of the families participating only found out about respite care by chance. 

In addition to these more visible reasons for the underutilization of respite care, there are several emotional factors at play. These components are harder to identify and can be even harder to overcome.

An article from the Caregiver Action Network explained four major fears that caregivers often have against respite care:

1. The stand-in caregiver won’t do a good job, therefore the care recipient would suffer a little.
2. The stand-in caregiver would do a great job, causing the family caregiver to feel incompetent or not needed
3. The family caregiver doesn’t quite know what to do with his or herself when they are not caregiving, because caregiving has become his or her identity.
4. The family caregiver feels guilt simply because they believe they are not living up to their obligation to take care of their loved one, even for the short time that a stand-in caregiver assists.

Another article cites one more emotional objection:

5. The caregiver worries about what would happen if there was an emergency while they were aware, and they don’t want that guilt.

These are very deep-rooted psychological fears that are challenging to address with logic alone. For example, one of the most common arguments for utilizing respite care is that by the caregiver taking better care of his or herself, they will be better able to care for their loved one. While that makes a lot of logical sense, it doesn’t address the problem of the caregiver feeling totally lost about what to do even if they had time to themselves. 

Helping Caregivers Care for Themselves

To help more caregivers receive the benefits of respite care services, it starts with listening. Simply listening to a caregiver express his or her feelings can provide relief for them. One participant in the NIH study expressed how all she wanted from her counselor was to listen.

For some people, it can be challenging to hear someone express frustration or anger. Often this leads to friends and family pulling away, and thus caregivers to feel isolated, which itself is an issue. It also contributes to the pent up emotions because they don’t have an outlet. Spending time with and listening to someone who is under the stress of caregiving can be a respite service in itself.

Listening can also lead to helping them work through their objections to using respite care. By hearing what they worry about (Is it the possibility of an emergency? Is it the guilt of not living up to a duty?), a trusted friend or family member can help the caregiver reach a decision point. This brings them one step closer to getting help.

Another strategy would be for more physicians to alert caregivers about respite services. This could come from the doctor of the care recipients (who would be well aware of the level of their patient’s needs) or also from a primary care physician of the caregiver. When a caregiver informs his or her doctor about their caregiving responsibilities, it can open the door to more discussions about their own health and how to better care for themselves.

As more and more people become caregivers, respite care will become more crucial. Without the needed relief and time off from caregiving duties, this generation of caregivers will continue to decline in their own health, which could in turn create another generation of people needing caregivers!

If you know someone who is caring for an ill or aging relative, reach out to them. Take some time to listen. Offer some specific help, and let them know that there are services out there to help them.
River Oaks Home Care provides respite services in Bucks, Montgomery, Philadelphia, and Delaware Counties. You can learn more about these respite services here or give us a call at 267-755-7500

References:

1 Guengerich, Terri. State Caregiver Profiles 2017–2020.

https://www.aarp.org/research/topics/care/info-2018/state-caregiver-profiles.html

2 Fifield, Kathleen. The Trickle-Down Effect of Caregiving on Women.

https://www.aarp.org/caregiving/basics/info-2018/women-caregiving-trickle-down-effect.html

3 Caregiver Burnout: Steps for Coping With Stress.

https://www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html

4ibid.
5National Institute of Health. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/

6 The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/
7 ibid.
8RESPITE: Time Out for Caregivers: Fears That Paralyze. ​https://caregiveraction.org/respite-time-out-caregivers-part-1

9 Time Off for Family Caregivers Can Be Invaluable. ​https://www.aarp.org/caregiving/home-care/info-2019/respite-care.html 10 ​The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives. ​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808833/
11 ibid.

12 Caregiver Burnout: Steps for Coping With Stress.

https://www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html