I was inspired to focus my senior thesis on caregiving because my grandmother lived with Alzheimer’s Disease for nine years, and my mother was her primary caregiver. She lived with me throughout most of my life, as my mom was a single mother, and my grandmother cared for me for much of my young life…making me soup, cleaning my room, getting me off of the bus, watching movies with me.
Sadly, as I grew up and into a young woman, I watched my grandmother deteriorate before my eyes. Suddenly I was caring for her instead of the other way around. I saw firsthand what a commitment it is to care for an elderly individual, not to mention how heartbreaking it is to watch a loved one suffer and lose their independence, their memories, and their sense of self.
After her passing, I became more involved in volunteer work for the Alzheimer’s Association. As a research student studying both Psychology and Sociology, I was not only motivated by my grandmother, but also by my mother, who was caught amidst so many roles in the middle of her life. She was a mother, a daughter, a caregiver, a return to college student, a full-time employee. Even as these roles depleted and I moved out of the house and went onto college, and my grandmother passed, her experience as a caregiver continued to have a lasting effect on her life. It has been almost five years since my grandmother passed away, and I can still see the way that providing care for several years day in and day out has shaped her as an individual, and has impacted her grieving process.
As a result, I began my caregiving research in 2008 with a “gender” focus, looking into the gender gap in caregiving and looked into normative family caregiving styles. This research emphasized the gender role of a female to transition from daughter, to mother, to caregiver, and discussed the “women in the middle” theory that stressed the different burdens that are felt by women who juggle multiple roles and experience great “caregiver burden” without much assistance and adequate resources to alleviate the negative impacts of caregiving.
Over the past few years, I continued my research, and have been pleased to find a much larger body of research available as time goes on. I have written several papers, focusing on different aspects of caregiving, such as the availability of family members in the U.S. with drastic demographic changes and changes to the family structure occurring (such as the average lifespan increasing, mortality rates decreasing, the average number of children per family hovering above the replacement rate, high divorce rates, etc.). Within this research I have also discussed alternatives to family caregiving, and have also brought up the timely political issues of Medicare, Social Security, and the changing economic picture for the elderly in the United States.
I have redirected my focus for my senior thesis to not only look at who cares for the elderly but why they do what they do, and how this impacts the subsequent outcomes of the role. Without giving too much away regarding the specifics of my theory and hypotheses, I have incorporated a popular social psychological theory on motivation with a great deal of both psychological and sociological research on family caregiving, and I aim to determine whether or not there is a relationship between different variables of a caregiver’s background and mindset and the positive and negative effects that are frequently associated with caregiving. I hope that this research will have a more positive tone than what has been done previously, showing the possibility for caregiving to do good for both caregivers and care recipients.
Because I have been so involved in the field for the past four to five years, there is not much research that has surprised me so to speak. I am very happy to see that there is much more available on the topic of caregiving, and that resources and support networks for caregivers are also becoming much more popular. I am not only pleased to see so much more research because it makes my work that much easier, but also because it means that the need for attention to the topic is being met, or at least to an extent.
I am very lucky to have access to the journals and databases as an undergraduate student at Bard College. I have some books on the topic and on the changes to family structure that impact caregiving systems, but I have found the access to online journals and databases to be the most helpful since they are constantly being updated with new publications.
One thing I wish I could find more unbiased information about is the availability of resources for the elderly such as Social Security and Medicare, and how many individuals/families rely on these sources of assistance for their cost of living and healthcare expenses. Also, I have found in my research that many caregivers point to these systems as failing their elderly family members, or creating a greater hardship by not covering necessary healthcare expenses, or not considering in-home assistance or quality nursing homes/facilities to be medically necessary. These are aspects that seem to exacerbate the burden of caregiving for lower income families. I will be interested to see as I do more data analysis from this survey if my data will back this up or not.
My research on this matter, and my experience with the nursing home that my grandmother lived in for the last year of her life, have greatly altered my outlook toward our healthcare system. I have been appalled by the quality of care in many public institutions, and have seen the clear connection between resources that are allocated toward the elderly. At this time, as the election is approaching, it is terrifying to think of how much worse things could possibly get for the growing elderly population who is increasingly debilitated by various diseases and disabilities late in life.
When my research concludes, I think that the group I would most like to share it with is individuals who were previously caregivers of family members/loved ones, but who are no longer living. I have received several heartfelt messages from individuals who found my survey to be very moving for them as previous caregivers, and they seemed to be the most appreciative of the work that I am doing. I look forward to following up with the individuals that have contacted me and sharing my results this winter. I would love to also share my research with the general public, because I feel that many younger people are completely out of touch with the fact that someday they will be caring for their aging parents, and someday they themselves will also need to be taken care of.