By Todd Walsh

Todd Walsh is the chaplain at Thorne Crest Senior Living Community in Albert Lea.

Many churches on Sunday will hear the story of the 10 lepers in Luke 17. The lepers approach Jesus, but there is a hitch.

“Keeping their distance, they called out.”

They keep their distance because they are infected with a horrible disease. They also keep their distance because they are ritually unclean. That’s a nice term for they are out with their family, they are out with their community and they are out with God — so said those who made the rules at that time. But this story is about Jesus changing those rules and changing lives.

I believe we have made dementia the new leprosy, and I believe it does not need to be so. Let me explain where I am coming from before I go further here.

First, I am a chaplain in a community where many residents live with dementia. I am part of a staff that does the training on it, and I am one of many who care for people who live with dementia.

Second, my mother has lived with dementia for many years. I saw the early stages along with the rest of the family. I was there for the diagnosis, I walk with her every day, even though most of the time I am 100 miles away.

I am no expert on dementia, and I do not feel my experience and insights on the disease are any more enlightened than anyone else. In fact, the more training I receive on it, the more I conclude we are simply being given more tools to care for those who live with dementia. There is no one answer, we do whatever works. 

My goal with these words is not to be medical; my goal is to share about how those who live with dementia can live as family, in community and in the presence of God. Dementia does not need to be the new leprosy. My goal here is also not to criticize. I apologize in advance is any of these words do that.  Here goes:

Should a person with dementia be isolated? That is the choice of the person who lives with dementia. However, I do believe normalcy slows the disease and improves the well-being of the person who lives with dementia and everyone around that person.

I still remember Ronald Reagan’s letter to Americans announcing his dementia and his withdrawal from public life. We just recently learned of Gene Wilder’s decision to also withdraw from public life, but then there is the example of Glen Campbell. The television special he did was impressive. I still remember his words, “Hey, I’m not done yet.”

My advice is to have conversations as family and friends about participation. Please do not assume that a person with dementia is not aware. For example, that church music sticks with us. I have seen many of our residents with dementia say very little, but when they hear a familiar hymn they sing, and they don’t need a hymnal.

Let a person with dementia be part of conversations. Give them time to take in what you have said and form an answer. It could take as long as a minute or more, and you may not get an answer, and the answer may come without words; it may be in a smile or the eyes.

Let the person with dementia be part of gatherings of family and friends. They will not participate as before, but it is good to let them participate at their level. If sleeping becomes their level, that’s fine. Being in your presence is a comfort.

Should you talk about a person with dementia when they are in the room as if they are not in the room? I would be very careful about this one. They may understand what you are saying and not be able to convey it, and we all know that we can understand emotion in a voice regardless of the words. Remember also that the goal is to include, not exclude.

Should you correct someone with dementia? People with dementia sometimes believe that loved ones who have died are still alive. Correcting them by saying that a loved one has died can restart the grief, and the cycle can unfortunately repeat itself. Why put the person with dementia through that? Let them live in their world on this one.

However, the same situation can be addressed differently with a person in the early stages of dementia. A person in the early stages of dementia may be confused or have a recollection that a loved one has died. It’s a matter of trial and error, but then it is helpful to remind that the loved one has died. It can also be helpful to comfort the person with dementia with positive words about the funeral, remind them that the person is in heaven and family and friends remain alive.

There is a simple guide on this one. If you feel that the truth will hurt too much, so be it.

What about those who provide for their loved one at home who lives with dementia? That is a noble and demanding task. I admire those who choose this path. It is important to remember to include others so the caregiver gets some rest and recreation. Including others also means the person with dementia is part of a family and community, and it is important to realize that the time may well come when the caregiver is no longer able to continue the caregiving. It is not failure, it is often the progression of the disease, and it is the realization that the needs of the person with dementia and the resources of the caregiver no longer match and need to change.

Please notice in what I have written here; there is a common theme of participation. We all know that requires effort in the best of times, and that is why it is good to have the help of family and friends and all the resources available to us today.

So, is dementia the new leprosy? That is up to us.  It does not need to be so. Those who live with dementia can remain part of a healthy family and community. It took the words of Jesus to bring new life to those 10 lepers and restore their lives. Our words and actions also hold the ability to bring life. Our Lord will restore us on the last day. Until that day, our Lord gives us the ability to do our part in our own ways to bring life.