Q&A: ‘Accompaniment’ is key to ministry among those with dementia

Sep 19, 2023

Susan McFadden, a member of First Congregational UCC in Appleton, is a retired University of Wisconsin-Oshkosh psychology professor founder of the Fox Valley Memory Project. She is one of the organizers of a gathering called “Creating Hope: Confronting Dementia with Meaningful Action,” scheduled from 9 a.m. to 3 p.m. on Sept. 28 at Jacob’s Well Church in Chippewa Falls. The event will provide the statewide kickoff of a push to bring to Wisconsin Respite for All, a church-based program that offers care both for individuals with dementia and for their caregivers. In an interview with Wisconsin Conference Life, she discussed ministry to people with dementia – and what the church can do better. This interview has been edited for clarity and length.

How do you assess the status of ministry to people living with dementia?

A lot of educating needs to be done. I interviewed pastors for a research project and remember one UCC pastor who understood who in the congregation had dementia and made a conscious, deliberate effort to keep them engaged.

Other pastors I spoke to had no clue. They didn’t think anyone had it because nobody said anything. Nobody says anything because of the stigma. Only about 50 percent of people ever get a thorough diagnostic workup. Many live with symptoms without getting a diagnosis. It could be that a pastor would be in position to encourage somebody to get a full diagnosis, but if nobody talks about it because of stigma, that’s not going to happen.

What do congregations need to do better?

Lots of things. They need to address aging generally. A lot of congregations believe that strength and vitality only come from the young. That attitude is strong among people in the pews as well as people in the pulpit – the emphasis for years has been on attracting young families.  I think a lot of congregations assume older adults are set in their ways and there’s not any more room for spiritual development. Congregations need to acknowledge that ageist attitudes have precluded seeing that.

Then there are obvious things to look at. Infrastructure. Building access. Can people read the bulletin and hear the sermon?

What does a faithful ministry to aging parishioners and those living with dementia look like?

I use the word “accompaniment.” And how can you best accompany people: by understanding that this is a progressive condition. There will be many opportunities for meaningful engagement, but sometimes people are having a bad day.

We need to understand that you can accompany a person by sitting in silence. By asking beautiful questions that rely not on memory by on imagination. It’s a complete way of relating to people. People with dementia can read body language. They can read facial expressions. They know if you’re bored. Those facts can go into training programs for parish visitors and clergy.

How can we help individuals with diminished cognitive skills practice their faith?

It depends on the type of dementia and where they are in the progression. Early in the process, it’s worship, Bible study, the labyrinth. As the progression moves along and language becomes more difficult, they can turn to music. People with dementia remember music. They remember scripture. They understand ritual. You can design worship that’s quite meaningful even for people living in memory care. It will look different from Sunday worship but will let people know they are still loved children of God.

It makes me kind of crazy when I see pastors come into a nursing home and use the same sermon from Sunday and the same bulletin. You see people dozing. What’s the point? A lot of the problem is that the pastor didn’t come in with worship they could engage with.

Pastors say, “Even if I go visit, they’re not going to remember my visit.” But that visit can provide a sense of being cared for in the moment. That visit can reinforce a person’s spiritual behaviors like prayer or scripture.

If you go:

What: Creating Hope – Confronting Dementia with Meaningful Action

When: 9 a.m. to 3 p.m., Thursday, Sept. 28

Where: Jacob’s Well Church, 989 122nd St., Chippewa Falls

Who should attend: Clergy, lay people, dementia care specialists, patients and their care partners, and anyone interested in the topic.

How much: Free

Details: You’ll learn about Respite for All and how a national movement of faith-based, volunteer-driven, intergenerational programs are working together to build communities of connection for those living with dementia.