Dementia: When Stigma is More Debilitating than the Disease Itself

An article in the Aging in Atlanta section of the Atlanta Journal-Constitution reports on an interview with a person living with dementia who was told by her doctor, at age 49 on the day of her diagnosis “to go home, get affairs in order and prepare to die. Find a daycare to go to and go once a month until I died.”

Rather than heed this advice, Kate Swaffer decided to go home and prepare to live with dementia, not die. She now lives fully and encourages people not to let others belittle them or reduce them to their disease or disability.

I wonder how we let subtle fears and misinformation prevent us from letting people living with dementia live fully?

I think fear, that cunning, subtle monster weeds its way into the cracks and crevices of society where the foundation will give just enough to let it in so it can stretch and grow and expand to become this entity that drives our responses to things we don’t quite know how to handle.

Fear of aging blinds our eyes to the gift that aging can be. In pursuit of purpose and production, we miss out on powerful stories and rich wisdom as the oldest old are left to carry their stories with them to a lonely grave.

Fear of the unknown paralyzes us from entering into the worlds of persons living with dementia to search the deep waters that lie within their souls; an opportunity to find, together, the divine spark that makes each of us unique. To bring that divine spark to the light is a treasure of an opportunity, to remind a person they are still a person. They are not forgotten.

The fear of being forgotten or irrelevant drives us to want to hold on to our youth and the glory days of our productive years, so that in later age, we lament and long for the days gone by. We should lament. It’s healthy, and Biblical. But the part of lament that we are letting our elders forget is that sorrow may last for the night, but joy comes with the morning.

We have to do better than to let our fears dictate how our elders will find meaning in old age, because this will also dictate how we ourselves will find meaning in our old age.

How can we come to a mindset of long life as a gift? For those who age “typically,” holding onto their minds, we say “congratulations.” We engage with them easily because the conversation looks very much like what we are used to, like what it should be because it means there is hope for our continued ability to engage with the world in old age as we do now.

What about those living with dementia, or the effects of Parkinson’s disease? What about those for whom speech and movement is hard due to illness or stroke? We look on with pity and say “I hope that’s not my future.”


Why can’t we look on with admiration at the struggles they have overcome, at the inner resolve it takes for a person living with dementia to press on in relationship to people who don’t seem to understand what they are clearly trying to say?

We, the church are responsible for this shift in mindset. Our youth-loving society is not just going to one day say “oh hey, maybe there’s another way.” We know the other way, and we have to show them a better way.

The way forward is the way of love, for we are called to love.

We can change the way our elders experience aging in America

when we look with love into the eyes of a person living with dementia, recognizing that the same creator made us both, loves us both, speaks to us both. When we look, there we find a soul longing to be set free and understood, to be soothed with balm and anointed with oil. Through the sharing of bread and juice, we send the message: all are included in the kingdom of God.

We can change the way our elders experience aging in America

when we listen over and over to the war and work stories we have heard so many times because we know that in the telling of stories, meaning is found and purpose is given; and God is never far away.

We can change the way our elders experience aging in America

when we think ahead to what we want our own aging experience to look like.

We must change the way our elders experience aging in America

by heeding the commands of Christ to seek justice, encourage the oppressed, defend the cause of the fatherless and plead the case of the widow(er). We’ve been given the tools to do this in the example of Christ: a foot-washer and truth proclaimer, a water and hope giver, a safe haven for those in distress.

We must go and do likewise, and create a world in which dementia is not a death sentence, but an invitation to a new way of creative living that is communally beneficial and spiritually rich.

With God’s leading and help, may it be so.




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