Care for others requires collaboration to be successful. Care is about relationships and a responsibility to reduce harm and nurture connections and growth. This means that we collaborate with other caregivers to provide care. It also means that we collaborate with those to whom we provide care. We empathize with caregivers and care recipients, and then we take compassionate action together.
Once we recognize the humanity of persons living with dementia and open ourselves up to their wants, needs, and patterns of communicating through behavior, we can then negotiate care with them. And once we negotiate care and discover what persons living with dementia want and need, we can join them in the joyful work of living. This is how collaboration arises for us in our relationships with persons who have dementia and need supportive care. Collaboration is possible because we deeply connect with others. We form attachment bonds with them.
Collaboration is a more complicated name for something that caregivers do very organically once they recognize another’s personhood and begin to negotiate what care looks like. Many people living with dementia need assistance with activities of daily living (ADLs) like getting dressed. However, oftentimes they can do much of the work of getting dressed on their own once they have received the guidance and input of others.
I have watched certain caregivers in facilities treat persons with dementia as if they were children that need to be dressed. And the caregivers really aren’t to blame for this. They haven’t been shown a different way to provide care and are overwhelmed and overworked much of the time. This kind of intrusive approach to dressing a person with dementia resembles parents who angrily dress their children, forcing them into clothes chosen for them and robbing them of their agency. Agency with children can be leaned into so that the children involved can discover their power to choose and shape their own experiences.
Similarly, our care can preserve the agency of persons living with dementia as much as possible. Until they lose the ability to move and interact, we can invite them to collaborate with us and other persons in their community. Care can be about supporting and scaffolding choice rather than doing the work for persons who need help. As caregivers we can give persons living with dementia the opportunity to work with us to the degree that it is possible for them.
I have also seen really good caregivers gently nudge persons with dementia into decisions for what to wear or eat or do by providing choices and reminding them to choose. This is like a wise mother providing good ideas for courses of action for her children and then reminding them to choose when the time has come. Keeping in mind the differences, a person with dementia might have clearer ideas of what she likes and doesn’t than a child because of her vast wealth of experience. The analogy serves to highlight that differences in power between a caregiver and care recipient can be used in a way that enables a person with less power to maintain a sense of uniqueness, choice, and dignity.
We work alongside those we care about, providing them with choice and scaffolding their ability to decide what they want for themselves. We do this as a way to express to them that we recognize them as people. And by doing this recognition work and finding points of collaboration, we enact careful ways of respecting a person’s identity and dignity along their end-of-life journey for as long as we can.
