I have attention deficit disorder and high blood pressure. I do not want people to introduce me as an ADD and high blood pressure chaplain. My mother developed vascular dementia due to cardiac problems following surgery. I do not want people to refer to my mom as a dementia person.
We all have symptoms, disorders, even diseases, but they don’t totally define who we are as people.
To name ourselves only by our symptoms and disorders minimizes our value as precious individuals created by God.
Focus on the Person
At United Church Homes, we are intentionally changing our language to align more closely with our vision of being a place “where the Spirit creates Abundant Life in Community.” Instead of using language the reflects a medical model of thinking, we are embracing person-directed care. Our focus is on people living in a home, not an institution. We honor our residents’ unique individuality and respect each person’s sacred value.
What is dementia? For most of us, what comes to mind is forgetfulness or memory loss. In reality, dementia is not a disease. Rather, it’s an umbrella term that covers disorders and symptoms that affect a person’s cognitive, physical and social abilities. Some people with dementia might struggle to remember what they ate for breakfast today. For others, dementia might impact their ability to find the right words. Others struggle to cook dinner or run errands. Some might even have changes in personality and behavior. The broad term “dementia” fails to adequately describe each person’s symptoms not only because each person’s symptoms are unique but also because each person is unique. What’s true about us as humans is true about us as humans who live with dementia: we are unique and different.
Dementia Resident vs. Person Living with Dementia
I don’t like the term “dementia resident” because it devalues personhood. The reason I prefer the term “residents living with dementia” is that the person is named first, and “living with” gives voice to all of our messy human journeys that are filled with experiences that both challenge and support us. And “living with” even names and respects the hard job of caregivers who love and provide for residents living with dementia.
Kaleidoscope of Diversity
More important than the term are the people. Let me introduce you to the amazingly diverse group of residents living with dementia whom I work with at Pilgrim Manor.
Betty attends Bible study each week. She needs someone to remind her of the day and time, and she tends to repeat herself frequently. Although she struggles with forgetfulness, she doesn’t forget God’s grace in her life. Every day I see her, she tells me, “I’m a sinner saved by grace.”
Richard forgets day-to-day tasks, and he tends to get irritated quickly, but he remains a gentleman and is able to identify opera singers by their voices alone. His passion and memory for all things opera is undimmed.
Maggie loves it when little children come to visit. Most of the time, she lives in a time when her five children were small and living at home rather than the post-retirement adults they are today. That means we need to let her live her life as she remembers it, and sometimes we need to reassure her the kids are safely at home. Dementia can entail the painful loss of some memory and relationships, but it doesn’t entail the complete loss of a person.
In This Together
God has a different perspective on disability than our culture which separates “abled” from “disabled” and values ability and strength. Community is strengthened when all of us with symptoms, disorders and diseases live together. As Paul puts it, “Don’t you realize that all of you together are the temple of God and that the Spirit of God lives in you?” (1 Cor 3:16, NLT) That’s what galvanizes our retirement communities and fuels our vision. Only when all of us belong — those unable to walk, unable to hear, unable to see and unable to remember, yet able to accept one another, extend hospitality and recognize our common humanity — can our lives in community radiate wholeness and peace.
My favorite neighborhood in our community is Garden Grove, where residents living with dementia come together with staff and family. What makes that neighborhood great isn’t the loving staff. It’s the staff and residents together who form mutual relationships of giving and receiving that makes all of us feel the warmth of loving belonging.