Between having to care for an ill or elderly loved one, the kids and themselves, the stress on caregivers can be overwhelming. When the burden gets to be too much to bear, caregivers can be affected emotionally, physically, and financially. We asked Karen T. D’Alonzo, PhD, an associate professor in the Division of Nursing Science at Rutgers University School of Nursing, about caregiver burnout, where to find support and more.
New Jersey Family: A caregiver has so many responsibilities, many of which we may not think of. What are they?
Karen J. D’Alonzo: Responsibilities generally involve tasks like providing physical and emotional care for someone, managing safety needs, pain management, meal preparation, providing transportation, coordinating medical care and assuming financial responsibilities. Caregivers may also be responsible for managing the living situation and finances of the loved one. Is it safe to let them stay in their house? Should they come and live with us? Should they go into an extended care facility?
NJF: What are some of the signs of caregiver burnout?
KD: Many are the same signs we associate with depression: not sleeping or sleeping too much, overeating or not eating at all, headaches, body aches, and then drug or alcohol use. We also worry about suicidal ideations.
If you or someone you love is suffering from thoughts of suicide, help is available through the NJ Hopeline. Call 988 to access the 24-hour Suicide & Crisis Lifeline.
NJF: What is the allostatic load a caregiver faces, and how does it affect their body?
KD: Homeostasis means the body is in a stable and steady state and is functioning optimally. Allostasis is the process of accommodation to maintain this stability given the demands of an environment. This becomes an issue when the demands of the environment — in this case, caregiver burden — persist over a long period of time. We generally describe this as a wear-and-tear process, and it creates a burden on the body’s resources. By the time we reach that stage, we call this allostatic load, and it can accelerate disease. It can cause cardiovascular disease; certain types of cancer; and mental health issues like depression, substance abuse, postpartum stress disorder and PTSD.
ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.
NJF: What advice can you share for caregivers who are physically, emotionally and financially overwhelmed? Are there any resources available that can help such as respite care or counseling?
KD: I think support that’s available to caregivers depends upon the specific need of the caregiver. For example, we often think of Alzheimer’s disease and the wandering behaviors, so the caregiver may need some nighttime assistance to ensure safety. If the caregiver has health problems of their own, they may need assistance moving the patient, so this could come in the form of a home health aide or a nursing assistant.
Respite care and counseling are often available through home care agencies, social workers, church groups, and disease-specific support groups. There are Family Caregiver Alliance, Working Daughter, and disease-specific support groups. For cancer, there is the American Cancer Society Caregiver Resource Guide, Cancer Hope Network, NCSS Cancer Policy and Advocacy Team, and My Cancer Haven.
Many of these support groups are now available online.
In New Jersey, there is a state-run program called the Jersey Assistance for Community Caregiving (JACC) program. Through that or Medicaid, the family member may be able to receive payment for providing caregiving services in the home, comparable to what you would pay for a home health aide.
ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.
NJF: Are you seeing a heavier load of caregiver burnout in immigrant populations?
KD: Yes, there is a lot of caregiver burnout in immigrant populations. My experience has been in the Mexican community, and we’re doing a study that is starting to see some of these kinds of issues in the Asian Indian immigrant community as well.
There are a number of reasons for this. Immigrant populations, like the rest of us, are aging. They may currently be experiencing health problems due to previously unaddressed health issues. This is particularly common among groups who are uninsured or underinsured. In Mexican communities that I work with, many people came to the U.S. quite young. Like a lot of us, they didn’t worry much about their health in their 20s. Now, in their 40s and 50s, they’re starting to see more chronic health problems.
Also, individuals who are undocumented and at risk for deportation are often living separated from their aging parents. They may have to manage parents’ chronic illnesses and end-of-life issues from afar.
If an immigrant person living in the United States wants to be buried in their home country, the family has to transport the deceased, and that requires the intervention of the Consulate in the home country. This is a lot of paperwork and a lot of frustration to do this kind of thing.
Lastly, and maybe the most important, this is a classic example of allostatic load, where you have people without any kind of papers, undocumented individuals who are faced with the daily threat of deportation, and now they’re faced with another chronic stressor, which is that of caregiver burden. It is such a complex situation, and that increased allostatic load can create a higher risk of illness for the caregiver.
NJF: How are children of caregivers affected?
KD: Caregiver burnout worsens the quality of the parent-child relationship and can result in social and academic problems. The child who may be accustomed to having their parent help them with their homework or transport them to sporting events may take a back seat.
Sometimes young children may blame themselves for the illness of the parent or the stress experienced by the caregiver parent. Adolescents may experience depression and anxiety symptoms because they see their parent in a very different role.
It’s also hard because kids come up with a realization that the grandmother or grandfather are not going to be around forever. When the person is living in the house, it can be a little shocking to see people going downhill and losing control of their bladder, or their bowels, or just not being the same kind of person that the kids had growing up.
ScreenNJ is a statewide service that provides education about cancer prevention and detection to the community and professionals. ScreenNJ supports NJ residents to obtain cancer screening through navigation and mobile health services regardless of their ability to pay. For more information about ScreenNJ visit screennj.org.
NJF: What advice do you have to encourage caregivers to reach out for support and take breaks?
KD: The most important issue to convey to caregivers is that no one expects them to carry out their roles without assistance. No one should be afraid to reach out for help. I refer to this as permission-giving, and it lets people know that no one should have to go through this by themselves, and it’s especially important with women.
In many ways, being a caregiver is trying to, as they say on the airplane, put the oxygen mask on yourself before you put it on the person next to you so that you’re available to help them. Get up and shower, turn the radio on, go for a walk, or go shopping when there is somebody else can sit with your loved one.
NJF: Are there any resources available to caregivers to help them stay on top of their own medical care, such as keeping up with physicals and screenings?
KD: It’s becoming more common for primary care providers to send text messages or emails to their patients to remind them of the need for bloodwork, screening tests or office visits. Online portals can be helpful as well. I encourage everyone to opt-in to these services and use them to help keep track. Again, caregivers need to know that it’s okay to ask for help from others so that they can stay on top of their own routine appointments and cancer screenings.
NJF: What words of hope and encouragement can you offer anyone who’s overwhelmed and stressed as caregivers?
KD: I like to tell people, “You are doing the best job that you can,” because in most cases, they are. Even people who are really struggling with being caregivers are usually trying their best.
Dr. Karen T. D’Alonzo, PhD, RN, APN-C, FAAM, is an associate professor in the Division of Nursing Sciences at Rutgers University School of Nursing, within Rutgers Health.
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