Alzheimer's "Caregiver" or "Care Partner": What Difference Does it Make?

by Bev Janisch

I've been struggling with the terms that we often use to describe the relationship between either formal or informal caregivers. Part of me wonders whether it really matters, and the other part of me thinks it matters as our words often dictate our thoughts, emotions and actions.

"Caregiver" and "care provider" are common terms that we often hear. The problem I have with these terms is the connotation that care is either provided and/or given and it is a one way street from me the "caregiver" to you the person with Alzheimer's disease.  I feel uncomfortable with this one way flow and somehow I believe it diminishes what really happens in the relationships between people. Interactions and connections with people experiencing Alzheimer's disease goes way beyond the "care" portion of the equation.

There were many times in my relationship with my mother in law that she was reaching out to me and trying to be supportive and helpful. This part of her nature existed until the very end of her life. Referring to myself as her "caregiver" or "care provider" somehow diminished her role in our relationship.

I think the terms, "caregiver" and "care provider" are consistent and aligned with a medical model of providing care and don't do justice to a more holistic and spiritual environment. I've been trying to come up with alternatives and the term that comes to mind is "soul partner".  The concept of being connected as souls seems to fit better with what I would hope we can work towards in our connections with people experiencing Alzheimer's.  I believe the soul is present in spite of the disease, and since we all have one, attempting to connect as souls would create more beautiful moments of mutual connection and sharing.

Perhaps changing from "caregiver" to "soul partner" would change the very nature of our relationships with people experiencing Alzheimer's from one based on care to one based on human beings. What are your thoughts about this? I would love to hear any other suggestions that you have about what to call this very special relationship!!