Several leading specialists of dementia care focus on the person living through the changes in life that dementia causes. They celebrate ways of providing care and telling stories about people with dementia and giving care to them that preserves the dignity of the unique person. These ways of providing care are often called “person-centered care” to emphasize how they keep identity and the unique qualities of personal experience intact until the very end of life. I believe mindfulness can enhance this work, serving as a means to recognize and honor a person’s uniqueness and dignity in end-of-life care.
Let me explain how I believe this works. One of the primary things that gets in the way of quality, patient-centered care is the biases and assumptions about what persons living with dementia are. We assume as caregivers what they can and cannot do before we even try things out with them. It is assumed that because they have lost the ability to think and remember, they cannot speak for themselves.
Caregivers might also experience fear, sadness, aversion, and avoidance, pulling away from deeper connections with persons who experience dementia. This may be because such persons do not or cannot communicate through words and language or because they have more intense emotional experiences and reactions. It could also be because they do not seem like themselves and who they once were. All these ways of feeling that come up for caregivers in the presence of those wit dementia are useful and necessary if we can find a way to use them to engage in better care. So oftentimes in poor care, caregivers just attend to the bodily needs of the person.
Sometimes caregivers do this not because of their fear or internal constraints, but because they have too many people to care for, which is a social problem. Oftentimes the social problem and the personal problem feed off of each other. While I can’t offer solutions to the social problem in a blog, I can suggest ways to do personal work so that you have tools to be more mindfully present, better situated in your relationships to practice excellent compassionate care.
Mindfulness practice gives us a really good, structured, and research-based way to do that work of using our own experiences to be open to, accept, understand, and have empathy for those we care for who are living with dementia. To accept and have empathy for others, we must do the same for ourselves first. All compassionate action flows from our ability to accept ourselves and others.
In what follows, I will make an argument about two things. First, person-centered care recognizes and responds to five basic needs that persons living with dementia have. Second, mindful caregiving allows us to have greater accuracy in seeing and responding to these needs. Each of the twelve things I discuss in the posts about dementia care relates to one of these five basic needs. These five needs and twelve ways to attend to them come from my own hospice chaplain work in memory care units as it converges with the research of several experts on dementia care.
