Theology of Dementia
What does the Church have to say about dementia?
As Church, we want to continue to provide ministry to people with dementia. Robert Johnson wrote, “Each stage and phase of life is ordained by God and therefore has a purpose…There is not one phase of life that is more important than another: each has its place; each is equally essential…Ongoing faith formation throughout life supports a spirituality that is constantly growing, ever changing…” We believe that spiritual growth occurs, even with dementia! As with any good ministry, the approach is not to “fix” but to “be with” “be present,” to say, “God is here,” “Come and see” (John 1:39). We want people to whom we minister to say, “yes I can learn something of God here, deep things about God.”
And we have to be open to what people with dementia can teach us and be willing to be transformed as well.
The question is how do we provide this ministry? How do we reach someone who has dementia?
One approach is to place the emphasis NOT ON THE LOSSES associated with the illness – yes they exist and are serious - but on what remains. Many abilities do remain. However, the person’s relationship with God ALWAYS remains.
As Christians we believe in the incarnation, that the second person of the Trinity assumed human form in the person of Jesus Christ. The body is very important in our story. We are embodied too.
And we have to be open to what people with dementia can teach us and be willing to be transformed as well.
The question is how do we provide this ministry? How do we reach someone who has dementia?
One approach is to place the emphasis NOT ON THE LOSSES associated with the illness – yes they exist and are serious - but on what remains. Many abilities do remain. However, the person’s relationship with God ALWAYS remains.
As Christians we believe in the incarnation, that the second person of the Trinity assumed human form in the person of Jesus Christ. The body is very important in our story. We are embodied too.
We learn from Genesis that we are made “in the image of God,” the Imago Dei and that sets us apart from the rest of creation (Gen 1:26-27) Paul writes that nothing – no illness, hardship, distress - can separate us from God. (Rom 8:31-39) Theologian Karl Barth says that God seeks us more than we seek God, and therefore our personhood depends less on our own particular state. God knows us! As John Swinton says, even if our own memory is compromised, we are living in the memories of God. Confident that God is with us no matter what, it is contrary to our teaching to reject the body in any way. The body is important, which is why we place a great deal of emphasis on it: see the Science of Dementia.
David Keck calls Alzheimer’s the “theological” disease because it affects our memory, language, and ability to plan the future—aspects of life that we ascribe to what makes us human. Some write that Alzheimer’s involves a loss of the self, even a decrease somehow in personhood. This unfortunate view may account for people not believing that their visit matters to the person – “she’s not the same person” or “she won’t remember that I was here anyway.” It may account for why sometimes there is shame attached to the illness, and why the subject can sometimes be viewed as taboo.
In the west, we value – perhaps overvalue – rationality. Post (1995) calls it a “hypercognitive culture.” Going back to Augustine, it was said that rationality is what separates us from animals. You may have been taught that in school. Descartes said, “I think, therefore I am.” But this is becoming outdated both by new science and by new theology. A person with dementia may not be capable of rationality, but they may still have emotion, instinct, love and spirituality until the very end stage. And new studies have shown that these ALSO MAKE US HUMAN.
New functional MRI studies have shown that when we make decisions, we use not just our executive function (in the front part of our brain) as was previously thought, but the section of the brain for emotion lights up just as brightly on the scans. We use a combination of rationality and emotion for good, well-balanced decisions. Our western habit of valuing rationality over emotion is no longer justified by what we know about the brain.
Further, Peter Kevern suggests it is the job of the Church community to share responsibility for memory on behalf of the individual. Remember the argument for infant baptism, that the community promises to stand on behalf of the infant who cannot yet make the decision on their own to join the faith? It is like this. We need to stand on behalf of an elder whose memory is impaired. We seek the Imago Dei in each other. We look for Jesus in each other.
Seen through the eyes of God, a person with dementia is no less human, hasn’t lost the self, the soul or for that matter, even all of their brain function! A great deal of brain function is still there. People can live with dementia for a long time, and as we learn more about best practices in care, such as Naomi Feil’s Validation Therapy, there can be quality of life.
“And now that I am old and gray-headed, O God, do not forsake me,
Till I make known your strength to this generation
And your power to all who are to come…
You have showed me great troubles and adversities,
But you will restore my life
And bring me up again from the deep places of the earth.”
Psalm 71
The Unitarian Universalist minister Jade Angelica writes, “I see that [people living with dementia] still have the potential to inspire us, teach us, love us, heal us, amuse us, befriend us, calm us, touch us, energize us, enlighten us, empower us, forgive us, nurture us, open our hearts, bring out the best in us, and bring meaning and purpose into our lives. We may be surprised to realize that persons with Alzheimer's still have the capacity to show us how to be humble and trusting and courageous and receptive; how to be authentically ourselves in this present moment; how to be guileless, innocent and completely without sin...
My Mom's diagnosis and her predictable decline called for me to overcome my fearful reactions about Alzheimer’s…But I chose to go very close to this illness and to stay with my mom forever. The result of those choices became an unexpected and precious love story that will be mine for the rest of my life.”
For more, see my 2017 Senior Thesis entitled "Developing a Theology of Personhood: the Case of Dementia."
My Mom's diagnosis and her predictable decline called for me to overcome my fearful reactions about Alzheimer’s…But I chose to go very close to this illness and to stay with my mom forever. The result of those choices became an unexpected and precious love story that will be mine for the rest of my life.”
For more, see my 2017 Senior Thesis entitled "Developing a Theology of Personhood: the Case of Dementia."