Disciple: God Is Still There
Being a spiritual-care visitor for those with dementia
By the Rev. Colette Bachand-Wood
“I have created you and cared for you since you were born. I will be your God through all your lifetime, yes, even when your hair is white with age. I made you and I will care for you.” Isaiah 46:3
It’s Monday morning at the dementia care community of our campus, and I arrive for our weekly worship service. Our residents are gathered in chairs and wheelchairs in a semicircle where they can see the table I have set with candles, a chalice, picture of the Holy Trinity, a Bible and a colorful painted cross from El Salvador.
As the service progresses, some sing along to familiar hymns like “Amazing Grace” and “How Great Thou Art.” Some sleep the entire time. Others seem to be somewhere else until their favorite prayer is read: “Lord make me an instrument of your peace,” and then suddenly they are mouthing the words with me.
And just when I thought someone wasn’t going to participate, I notice that although her eyes are closed and head tilted forward, her foot is tapping on time with the beat of “This Little Light of Mine.”
God is still there for those living with dementia. It was the earliest lesson I learned when I began researching what it meant to provide spiritual care for them.
TENDING THE SPIRIT
God is still there and, as people of faith, we do well to ask how we are doing caring for their spiritual needs. People living with dementia have a great deal of helpers tending to their physical needs, medical needs, making decisions about the best places to live and making plans for end of life. But what about their spiritual needs? Who’s tending to their spirit? Dementia stills many things, but is does not still God.
Often as churches and people of faith, we talk about Jesus’ imperative to care for the “least of these.” We ask who are the least of these for our time, and it can certainly feel like a long list as we consider immigrants and refugees, homeless people and those addicted to opioids, but I believe one group often overlooked in our day are the aging and, more specifically, those living with dementia. In a culture that overvalues youth, beauty and productivity, those with dementia can easily be brushed aside, and this is particularly true in our parish life where so much focus is on the youth.
Ask any parish mission team what they are doing to grow their church and you will likely hear echoes of “attracting young families.” Many dioceses have a full-time staff member dedicated to youth ministry, but we are hard pressed to find such a position for the aging.
And yet, according to The Episcopal Church website, one in three Episcopalians right now are over the age of 65. Among those over 65, the number of people living with dementia increases daily, with an estimated 50 million people worldwide living with some form of dementia, with another 10 million diagnosed each year. Those numbers are expected to skyrocket in the next 20 years. As Baby Boomers enter their older years, experts tell us we need to be prepared for what’s being called “The Silver Tsunami.”
DEMENTIA 101
When considering spiritual care for those living with dementia, it’s helpful to have a basic understanding of what is happening. Dementia and Alzheimer’s are terms often used interchangeably, but dementia is actually an umbrella term that encompasses between 80 and 90 different forms of cognitive disease, of which Alzheimer’s is one.
While the particulars of the different forms of dementia are too extensive and varied to discuss here, what is important to know is that dementia often affects the left side of the brain first, which is home to our cognitive function and language. This is why confusion and difficulty in communicating are common symptoms.
It is in the right side of the brain where music, poetry, emotions and our spiritual foundations are stored. And as that is often affected more slowly, it is why spiritual care —and the traditions of our faith—can be so effective in connecting with those who can’t connect in other ways.
REMOVING THE BARRIERS
So are our congregations prepared for the silver tsunami? How can we be in ministry with those who filled our Sunday school classrooms 60 years ago but now struggle to remember their loved ones or what they ate for breakfast?
There are quite a few barriers to providing spiritual care to people with dementia, but there are ways to work around them or remove them altogether.
To start with, gain at least a basic understanding of dementia so you know some of the challenges those with it face. Don’t be afraid to talk about it or ask questions; being around people with dementia can make a caregiver feel uncomfortable, fearful and perhaps helpless, not knowing what to do. But asking questions can help you know what to do, and that knowledge can ease the discomfort.
It’s an effort worth making. All too often in my travels, I have heard about people who don’t receive visits anymore, simply because those who would visit are uncomfortable. The spouse of a person with dementia will say something like, “Nobody comes anymore.” People who have been friends for decades at church together—serving on the altar guild, running the youth ministry—now stop visiting because it is hard to watch a friend suffer with dementia. It is scary to see and worry it will happen to them. Families in our congregations who are living with dementia can become very isolated.
Even clergy aren’t trained to be in ministry with people with dementia. In our pastoral care classes, we talk about caring for people with cancer or depression, or dealing with grief, but no one ever teaches us what to do with dementia. Unless a clergy person did their field education in an institutional setting, experiences with dementia may be limited to a grandparent or loved one. The words, “Will you go see my mother in the nursing home? She has Alzheimer’s,” can be very frightening to a new rector.
As a church, though, there are things we can do to become more comfortable being in ministry with those with dementia. We can equip our congregations to be comfortable talking about dementia and create parishes that are dementia friendly. Many parishes I have worked with have put together a dementia care team and received special training for that purpose. Parishes will often plan an educational speaker series and invite professionals to come and talk about dementia.
When we visit someone with dementia, we can pray with them, share Holy Communion or sing a favorite hymn with them. Providing spiritual care can help the person with dementia feel connected to others, improve well-being and help create spaces of calm in what is otherwise a very chaotic world created by the disease.
DON’T FORGET
As we think about Jesus’ call for us to care for the least of these, let us not overlook those with dementia. Years ago when I worked as a hospice chaplain, I was invited to speak to the support group at the agency of spouses and caregivers of people with dementia. As I was showing them what I did on my visits and the tools I used for them, I noticed one woman at the end of the table was gently crying.
I paused and said, “May I ask what your tears are about?”
To which she answered, “Thank you for doing this, everyone else has given up on them.” As spiritual care providers, let us not forget them. And Lord, help us to remind them you have not forgotten them either.
TIPS FOR SPIRITUAL-CARE VISITS TO THOSE WITH DEMENTIA
1. First, acknowledge your own fears, worries and discomforts, and despite it all, show up anyway. Just showing up is what will matter most.
2. Call ahead to see when is the best time of day to visit. Some people with dementia don’t get going until late morning so afternoons are best. Others experience “sun downing” in the afternoon and become more restless, so mornings are better.
3. If you don’t know the person you are visiting, find out a little about them before you go—what they did for a living, what things they like, etc. These will be good things to reflect on if the person is able.
4. Pack a bag with religious items like a Bible, battery operated candles, colorful crosses, statues, chalice, linen, music device, etc. These will be “cues” of faith. Sense words don’t work as well as they used to; these visual cues will help you more.
5. If the person is able to have conversation, consider what kind of topics you might bring up (like things from their childhood), but drop the word “remember.” Asking the person who has dementia to “remember” is like asking someone with a broken leg to run a marathon. They can’t do it.
6. Dress the part: if you are clergy, clerical collars or even a stole helps to cue what you are there to do.
7. Music! Music! Music! If you can’t sing, bring a device on which to play church music. The person with dementia can easily access songs and prayers.
ADDITIONAL RESOURCES
Do This Remembering Me: Spiritual Care for those with Alzheimer’s and Dementia, by the Rev. Colette Bachand-Wood; available through Amazon and Church Publishing Group.
Aging Life Care Association (ALCA): Formerly the National Association of Professional Geriatric Care Managers
The Conversation Starter Kit – A helpful booklet for talking to your loved one about end of life care wishes. There is a specific version for those with Alzheimer’s and dementia. Visit the website or call 617-301-4800.
“The Genius of Marian”: A moving story and video of one family’s experiences with Alzheimer’s.
Memory and Music: Organization that provides resources and training for their program that uses iPods to enhance the lives of those living with dementia.
Positive Approach: Teepa Snow travels throughout the country, and her training programs are offered regularly for professionals and family.
The Rev. Colette Bachand-Wood is the chaplain and priest-in-charge at Penick Village and the author of Do This Remembering Me: Spiritual Care of those with Alzheimer’s and Dementia.
Tags: North Carolina Disciple
