By David L. James

During The Peace, the man next to me in the pew said we’d have to scoot down to make room for his wife. I moved over although I knew his wife had been dead for nearly 20 years.

A few weeks earlier my church companion put on her coat and started to leave every time we stood in the liturgy. When I picked her up for church she was waiting for me outside her room, elegantly dressed and perfectly coiffed with a shopping bag full of wire coat hangers and an alarm clock. Confusion of time, place and people are my daily companions.

I first heard of this condition when my father told me stories about his father’s battle with what he called the “memory thief.” Years later, in his late 50s, my father contracted the same disease we know as Alzheimer’s.

There are 5 million people with Alzheimer’s in the United States today and the number has doubled since 1980 as our population ages. Alzheimer’s is the most common cause of dementia among people 65 and older. Nearly one of every two people over the age of 85 has Alzheimer’s. The risk rises with age but it is not a normal part of aging.

Alzheimer’s is a progressive degenerative disorder that attacks the brain, resulting in the loss of memory, thinking and language skills. Personality and behavior changes are the results of these losses, and increase in severity as the disease progresses through early, middle and late stages.

As we age we all forget things. Like a filing cabinet increasingly stuffed with data, the older we are the longer it takes us to retrieve things and sometimes we can’t find them at all. But Alzheimer’s is not just forgetting to turn off the coffee pot, or where you put your keys, or someone’s name. It’s also the loss of reasoning.

Although Alzheimer’s caregivers consistently report that worship services have a calming, peaceful effect on patients, church is frequently one of the first places that caregivers avoid. They fear their charges will disrupt the service, annoy the congregation and embarrass the caregiver.

Nearly everyone knows someone who suffers from the disease, but welcoming dementia patients seems overwhelming to most clergy and congregations. Although no two Alzheimer’s patients behave exactly alike, there are some simple guidelines clergy and lay persons can use in welcoming those in the early and middle stages of the disease with a minimum of disruption:

1. Talk to loved ones and caregivers. Let them know that your parish is Alzheimer’s friendly and that you will work with them to provide an environment that is mutually conducive to meaningful worship.

2. Educate the congregation about the nature of the disease, predictable behaviors and responses, and the needs of the caregiver.

3. Talk directly with Alzheimer’s patients. Don’t talk about them in front of them as if they aren’t there or can’t understand. Most early- and middle-stage Alzheimer’s patients know exactly what is happening.

4. Make short, concrete statements. Avoid complex sentences, abstractions and metaphoric language. Because of short-term memory loss, long sentences or those with more than one subject may create confusion.

5. Don’t treat Alzheimer’s patients differently from anyone else in the congregation. Keeping their place in the prayer book may be difficult, but holding a prayer book, hymnal or bulletin like everyone else is important in maintaining their dignity.

6. Don’t ask questions which demand choices. Asking would you like to sit on the right side is far better than asking would you like to sit on the right or the left.

7. When Alzheimer’s patients can’t find the right word they frequently use a synonym, a word that sounds like the one they want, or the opposite. I recently asked a man if he wanted to go to coffee hour. He hesitated then said, “No, I love coffee.” Listen not only to the words but the context.

8. Expect delayed responses. Don’t assume Alzheimer’s patients can’t respond just because they haven’t answered instantly. If it’s obvious they can’t find a word, offer one.

9. Beware of Sundowner’s Syndrome in which many Alzheimer’s patients become increasingly confused and agitated at dusk. Morning services are almost always better than afternoon or evening ones.

10. Invite Alzheimer’s patients to sit as close to religious symbols as possible. The sight of a cross, altar or candles are powerfully soothing, as non-verbal connections go back in the memory and deep in the soul.

In the last stages of his disease, my mother brought my father to visit me in seminary before he died. By then even short sentences were rare. As I gave him a tour of The General Seminary campus, my dad stopped inside the doors to the Chapel of the Good Shepherd and began to weep. He gestured toward the altar and the statue of the Good Shepherd bathed in soft light. He tried to speak but uttered only a single word which made no sense.

And then like some beam of light briefly piercing through a tiny window he managed five words: “Don’t give up on me.” I believe he was asking us to keep taking him to church. Long after he had forgotten his children’s names, where he lived or what he’d done for a living, seeing the altar sparked memories of early piety that still provided peace and comfort in the moment. He reached for the sacred through the non-verbal.

Care for Caregivers

At the onset, Alzheimer’s disease has two victims, the patient and the caregiver, who is usually a spouse or an adult child. As the disease progresses, the primary victim becomes the caregiver. Less than 20 percent of Alzheimer’s patients are institutionalized during the early stages of the disease, so spouses and family members provide nearly all of the round-the-clock care.

Alzheimer’s has been called “the long funeral,” or “the longest goodbye.” Some caregivers live 20 years or more watching a mind die while the body lingers on. Caring for a loved one whose memory is failing and personality is changing is an unimaginable nightmare. Fatigue, isolation, and depression are common emotions for caregivers.

There are some important things a congregation can do for an Alzheimer’s spouse or caregiver which don’t require special training. The only expertise needed is patience and a ministry of presence.

By spending time with both the patient and the caregiver, a volunteer can get the feel of how the Alzheimer’s patient talks, behaves and responds. Offering to stay with an Alzheimer’s patient while the caregiver enjoys some free time is a gift of enormous proportion.

Many Alzheimer’s patients love to walk but get confused and lost if alone. Offering to take them for a walk gives the caregiver an oasis in their day.

Regular phone calls to caregivers assure them that they are not alone or forgotten, and a normal chat rather than confused, irrational conversations is a refreshing change.

Alzheimer’s is a 24-hour-a-day, seven-day-a-week condition that only gets worse. When the care of a loved one with dementia becomes too great for a family member, contemplating placing the Alzheimer’s patient in an assisted living facility is fraught with feelings of guilt, failure and weakness.

As caregivers wrestle with perhaps the most difficult ethical decision of their lives, this is where the ministry of the church belongs. Support from clergy and lay ministers is critical for the emotional and spiritual health of the caregiver.

I am passionate about this ministry for two reasons. First, God has called me to minister to those of his children who have lost memory and the ability to reason. My friends who cannot finish a sentence or remember their children’s names and need me to lead them to lunch have become my family.

Second, as someone genetically predisposed to suffer from familial Alzheimer’s in the next few years, I hope that someone will take me to church when I no longer know what day it is. I hope someone will sit with me and listen to the hymns when I can no longer read the words. I hope someone will lead me to the altar to receive communion when I don’t know which way to go.

I hope there will be someone who won’t give up on me.

David L. James works with Alzheimer’s patients in Rye, N.Y.

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