He also identified negative aspects of caregiving, including the burdens associated with selling his grandmother’s home and helping her settle into his family’s home:
For the last year it has been kind of hectic with trying to make things easier, doing what needs to be done, taking care of her house. Now that that’s out of the way, that’s a big burden out of the way.
Caregiver motivations
Eight caregivers shared their motivations for deciding to care for a homebound relative or friend. These comments were unsolicited and unexpected. Four caregivers believed they were repaying the patient for help received earlier in life.
A 69-year-old daughter-in-law said the following:
I say to her the same thing I said to my mother: “You took care of me when I was little and I am taking care of you. Now it is my turn.”…I mean we are put on this earth for a purpose and I figure this is our purpose. God put us down here to take care of someone or to help someone.
Potential for caregiver transformation
Another unexpected finding from our study was that 3 interviewees reported that they or their family members were changed by the caregiving experience. Transformations included changing one’s outlook on life, changing one’s views of the caregiving role, and being able to better cope with the death of others.
A 59-year-old homemaker related how her feelings about caregiving changed over time, and she felt she was repaying her mother for help she herself had received:
My major thing in the beginning was I really felt dumped on, like you have to do this whether you want to or not to prevent her from going in a place she didn’t want to go to. But then, after a while, I didn’t feel that way no more because she helped me when I needed help, when my kids were little. She was always there for me.
Discussion
While the medical literature to date has focused on the burdens and difficulties of caregiving, our study shows that caregivers have positive as well as negative experiences in their roles, and that, for some, the experience is a complex mixture of burdens and benefits. Interestingly, 4 of the 5 caregivers who experienced that mixture lived with the patient, suggesting that proximity and increased exposure may result in a more complex experience. In addition to these findings, some caregivers have different motivations for providing care. A small number even describe the experience as transformative.
These findings are consistent with a few studies from the nursing and social science literature that address the positive aspects of caregiving.11,20 For example, 2 studies found that caregivers of patients with dementia experienced both positive and negative aspects of their role.10,12 A recent analysis of a national survey of caregivers noted that two-thirds had feelings of personal reward.13
How can you support caregivers? A deeper understanding of caregivers’ diverse motivations and experiences can help physicians prepare others for this important role, and support and encourage those who are already caring for someone.
You can offer support by discussing with current and prospective caregivers the possibility that the role may bring both positive and negative experiences.
It may also be helpful to describe the potentially transformative nature of caregiving—to point out that some people report that their negative feelings have become more positive in time. In the end, care of dependent elderly patients may improve with such awareness.
Pool of potential caregivers larger than expected. Another finding of our study is the diversity of caregivers. Only 9 of the 22 caregivers interviewed were spouses or children, and only 5 of these 9 were wives or daughters. Among the children, there were just as many sons as daughters. Grandchildren were also represented, and 41% of the caregivers were unrelated to the patient.
Traditionally, many health professionals and the public have looked to female adult children or spouses to care for patients, and the literature on the caregiver experience often represents their views. However, some studies have noted that friends and others are also involved.21 Our finding adds to an evolving understanding that potential caregivers for the homebound elderly can be drawn from a broader pool than first-degree, female relatives.
Limitations of this study. The study sample was small—22 caregivers who live in a particular section of the greater Baltimore metropolitan area. In addition, most of the caregivers were Caucasian and thus do not reflect the ethnic diversity of the United States. As such, we must be cautious in extrapolating these findings to other caregivers in other settings. Nevertheless, we believe that aspects of the caregiver experience reported here will ring true to caregivers who live elsewhere.