ROCHESTER — They may not shout it from the rooftops, but people slowed by Alzheimer’s disease still hunger for a connection to the wider community.
"One of the things I hear over and over — and it breaks my heart — is, ‘people from my church don’t come to see me anymore,’" said Sharon Boyd, senior vice president of the Alzheimer’s Association’s Rochester chapter, during a workshop May 2 at Asbury United Methodist Church. The event drew approximately 40 people from various religious denominations who minister to Alzheimer’s patients.
Emily Scheil, an Alzheimer’s Association program manager, said although the disease saps the ability to initiate and communicate, "it doesn’t mean that person doesn’t have something to express." She said a key in the communication effort is "putting yourself in the person’s shoes" through a clearer understanding of Alzheimer’s — a progressive disease that erodes the brain’s memory cells, causing personality changes and decreasing ability to comprehend and speak.
Noting that "files are gradually being deleted," Scheil said patients lose their capacity for logical thinking, insight and good decision-making: "Those things are just no longer there. They’re not going to be able to improve or retrain skills." Therefore, they should not be rebuked for failing to retrieve seemingly simple facts, such as names and ages of loved ones. "That’s not going to make the person more comfortable," Scheil said.
She said to instead be "focusing on what strengths still are, and not expecting too much." One potential strength is long-term memory, which can more readily access such details as growing up, getting married, jobs from young adulthood and having children.
Although Scheil warned that "one thing that works for one is not going to work for another," she said a fairly universal approach is to smile and have a pleasant outlook: "Speak clearly, slowly, calmly in everything you do." Another is to simplify instructions — for example, instead of commanding a person "Get up, come with me, we’re going to eat," simply start with "Get up." She added that it’s wise to avoid engaging in debate: "If you try and argue with the person, I guarantee you’ll never win." In lieu of words, a simple hug or touch on the arm can prove meaningful as well.
Scheil noted that "the person is always functioning in the moment," unable to easily recall recent details or gauge future plans. Other telltale signs of Alzheimer’s, she said, are inappropriate language and behavior; lack of patients’ ability to interpret the environment, their behavior and behavior of others; and diminishing ability to read, write and spell.
The May 2 gathering at Asbury United Methodist also included an overview of the disease by Garrett Riggs, a neurology specialist at Strong Health. According to the Alzheimer’s Association, an estimated 4.5 million Americans are afflicted with the disease, with that figure expected to at least triple in the next 40 years.
Another priority of the workshop was on loved ones who care for people with Alzheimer’s.
"Too often, in our line of work, we are burying the caregiver before the person with the disease," Boyd said, noting that "care-giving for someone with dementia you’re living with is 24 (hours) 7 (days per week)." She suggested helping caregivers by assisting with patient’s doctor appointments; running errands; and getting a gift certificate for a massage.
Workshop leaders said support groups for those affected by Alzheimer’s are valuable as well. One of the day’s participants, Sister Clare Brown, SSJ, said she aims to begin one at St. Jerome’s Parish in East Rochester, where she serves as pastoral associate. She plans to promote it in the bulletin because parishioners aren’t otherwise likely to admit their loved ones have Alzheimer’s, and/or that they themselves are burning out or suffering emotionally.
"They won’t tell you," Sister Brown remarked.