As the number of elderly people in the United States continues to grow, more and more individuals will need full-time caregivers at home.
Being a primary caregiver for someone can be a rewarding experience. If the person being cared for is a close friend or family member, often the bonds of friendship and family are strengthened, and costs and resources are saved.
However, being a full-time caregiver can also be difficult. Caregivers often provide help with basic daily activities such as eating, using the bathroom, and bathing. They also manage medications and medical visits. Caregiving can be a 24-hour job without a break. In most cases, the caregiver is a friend or family member and therefore does not have formal training in caregiving. Up to 90% of adults needing long-term care at home are cared for by a family member.
Sometimes, performing a large number of caregiver tasks leaves little time for the caregiver to tend to his or her own needs. Over time, this can have negative effects on the caregiver: socially, psychologically, and physically. This is known as “caregiver burden.” Sometimes, the caregiver becomes an “invisible patient” despite frequent interactions with the medical system, because the focus is always on the person being cared for. In recent years, doctors, social workers, and other family members have become more aware of caregiver burden and ways to address it.
Often, caregiver stress is a difficult topic to bring up, whether you are the caregiver or it is a friend or family member in that role. Questions that can be asked of a caregiver to start the conversation include
How would describe your quality of life?
What do you do for fun?
How often do you get out of the house?
Are there times you feel like you really need help but don’t ask for it?
Are there specific tasks such as getting groceries or paying bills that you need help with?
Who gives you help when you need it?
When was the last time you saw your doctor?
Does your doctor know about your caregiver role?
If the answers to any of these questions raise concern, there are ways to help. You may be able to help directly, or you can call on other family members, friends, or neighbors to provide help. It is also a good idea to tell the caregiver’s doctor about your concerns. There are many online resources for caregivers, some of which are listed below. These are described in more detail in an article by Adelman and coauthors in the March 12, 2014, issue of JAMA.
US Centers for Disease Control and Preventionhttp://www.cdc.gov/aging/caregiving/resources.htm
AARP Caregiving Resource Centerhttp://www.aarp.org/home-family/caregiving
The Caregiver Action Networkhttp://caregiveraction.org
Family Caregiver Alliance http://www.caregiver.org
To find this and previous JAMA Patient Pages, go to the Patient Page link on JAMA’s website at jama.com. Many are available in English and Spanish.
Source: Adelman RD, Tmanova LL, Delgado D, Lachs MS, Dion S. Caregiver burden: a clinical
review. JAMA. doi:10.1001/jama.2014.304.
Jill Jin. Caregiver Support. JAMA. 2014;311(10):1082. doi:10.1001/jama.2014.1773