My name is Lauren Fisher, and I’m a PhD candidate at the University of Pennsylvania’s School of Nursing. For the past 10 years, I have worked with families affected by dementia. Throughout my studies and career, I’ve always felt something was missing in the care and research for families living with dementia. After talking with patients, caregivers, healthcare workers, and researchers, I realized that an important human aspect was often left out. This missing part is related to the emotional and behavioral changes that happen in dementia, which affect a person’s ability to connect with others. One of these emotional changes I’m studying is called empathy loss.
Empathy is the ability to understand and respond to someone else's feelings. It's important for building strong, close relationships and communication. In dementia, especially in Frontotemporal Dementia (FTD), empathy loss happens early on. Family members often notice that they no longer feel as emotionally connected to their loved ones. While empathy loss is most common in people with FTD, it also affects about 40% of people living with Alzheimer’s Disease.
If you're reading this blog, you probably understand how important it is to find ways to support people living with dementia and their caregivers. Research shows that emotional connection between caregivers and people living with dementia are key to helping caregivers keep going with their care. So, learning how and why these emotional moments happen could help support both caregivers and people living with dementia.
Right now, I’m collecting data for my PhD dissertation. My research is about how empathy loss in people living with behavioral variant Frontotemporal Dementia (bvFTD) affects stress in spousal caregivers. I want to understand how losing empathy may change the emotional bond between someone living with bvFTD and their spouse who is also a caregiver. I think that as empathy fades, it might be harder for the person with bvFTD to stay emotionally connected to their spouse, which could make caregiving more stressful. I’m also looking at how social support, like help from friends or family, might affect how much stress the caregiver feels. I believe that caregivers who have more social support might feel less stressed than those who don’t.
To answer these questions, I’m using a mixed methods design where I will collect both standardized surveys and semi-structured interviews with caregivers. This will help me learn more about how caregivers feel and what emotional changes they notice in their loved ones. I hope my research will advance the understanding of how empathy loss affects emotional connection and how it impacts both caregivers and people living with dementia. These findings may be pivotal in enhancing intervention development to reduce stress for both caregivers and persons living with dementia.
~ Lauren Fisher, BSN, RN
Doctoral Student, University of Pennsylvania School of Nursing