Guest Author R. Amanda Cooper M.A., Doctoral Candidate, University of Arizona
Through my research at the University of Arizona, I have talked to many individuals who are caregivers to a family member who is living with Alzheimer’s disease or another form of dementia. I find these caregivers inspiring. Despite the incredible challenges that come along with dementia, many of these caregivers are able to cultivate a sense of ongoing love and connection with their family members across the course of the disease.
One woman, I’ll call her Bella, cared for her husband who had Alzheimer’s disease for over 10 years. During this time, she and her husband faced several challenges in their relationship because of the symptoms of the disease. Yet, after all was said and done, Bella had this to say about her experience:
How does love win when it comes to dementia care?
One of my goals as a communication researcher is to find out.
Before we can figure out how love wins, we must first understand what we’re up against when it comes to caring for a spouse or family member with dementia. In a recent study about the impact of dementia on marriage, I discovered that caregiving spouses experience several relational changes as their partner progresses through the stages of dementia.
The early symptoms of the disease are often frustrating and change the relationship as the partner’s behavior begins to change.
As the symptoms progress, the relationship shifts from a spousal relationship to more of a caregiving relationship. This occurs as the caregiving spouse begins taking over more household roles, monitoring their partner’s driving, and providing more physical care. Finally, near the end of the disease trajectory, the partner with dementia may forget the name of their spouse or have other challenging memory issues that create a sense of loss. Despite these changes, many caregiving spouses experience a deep sense of love for their partner across the stages of the disease trajectory.
Many caregiving spouses describe a deeper and different sense of love that developed for their partner as they provided care.
This love was different than what they experienced earlier in their marriages and involved a deeper sense of care, commitment, and friendship. For some, the act of providing care was a way of enacting their marital vows and cemented their commitment and love for their partner. Others described caregiving as an act of love that increases their commitment to their partner.
Communication was important in cultivating this sense of love and maintaining connection.
Early in the disease trajectory caregiving spouses had open and intimate conversations with their partners that helped them cement their love for each other and face the disease together. When faced with challenging disease-related behaviors from their partners, caregiving spouses were strategic in finding ways to avoid engaging in unnecessary conflict, maintaining peace in their relationships. They also avoided pointing out symptoms to protect their partners from feeling ashamed or embarrassed about dementia. Protecting their partners from embarrassment helped strengthen caregiving spouses’ sense of love and commitment.
Caregiving spouses found enjoyable activities they could share with their partners.
These positive shared experiences helped them feel connected even as the disease progressed. Finally, they communicated love both by saying “I love you” or holding hands, but also through providing gentle care and support. Through these simple acts of care and companionship, caregiving spouses were able to transcend the challenges of dementia and maintain connection with their partners across the disease trajectory. Echoing the words of Bella, I will end by saying that “love wins because dementia will rob the brain, but I believe it doesn’t rob the heart.”
R. Amanda Cooper M.A., Doctoral Candidate, University of Arizona
My research about dementia caregiving is ongoing. If you are providing care to a family member with Alzheimer’s disease or another form of dementia, I would love to hear your perspective.
Note: You must be over the age of 18, a caregiver to a family member with dementia, and able to speak English to participate. The survey only takes 20 minutes to complete. You can complete the survey here: https://bit.ly/dementia_survey