When Judy Spencer meets her friends at a Lecanto assisted living facility’s memory care unit where she volunteers, there is always a halting moment of uncertainty.
“Sometimes they recognize me, sometimes they don’t,” said the 75-year-old Spencer.
Sometimes they exchange familiar hellos; sometimes Spencer must introduce herself as if they never met. Sometimes they want to talk; sometimes they are stoically silent.
The retired elementary school teacher from Michigan lives in Grand Living’s independent wing. She volunteers twice a week at its Monarch memory ward organizing and operating its bingo games.
“It’s always different, every time ... when I come,” Spencer said, sitting at the empty table where moments before nearly a dozen memory residents were playing bingo. “It’s about the stage and the moment of the disease at that time. And you start from there.”
Alzheimer’s disease is a progressive deterioration of the brain that happens most often in old age.
The disease affects different parts of the brain at different rates, but has its most onerous affects on memory, language and thinking skills.
The number of Americans living with Alzheimer's is growing: An estimated 5.7 million Americans of all ages are now afflicted.
The Alzheimer’s Family Organization will host its annual Walk Aware for Alzheimer’s 9:30 a.m., Oct. 20 in downtown Floral City. Preregistration begins at 8 a.m.
These stories are meant to remind readers of the prevalence of the disease, the needs of those afflicted and their caregivers.
But they are also meant to encourage the friends of those who have Alzheimer’s to continue being a friend — not to shy away or write sufferers off like a broken appliance.
Of those who have Alzheimer’s, about 5.5 million are 65 years old or older. The rest have early-onset Alzheimer’s. That means one in 10 seniors age 65 or older has the disease. Two-thirds are women. It is the sixth leading cause of death in the US.
Despite decades of work and billions of dollars spent on research, scientists still don’t know what causes the disease. There is still not a single drug to slow Alzheimer’s progression.
Usually family members step in to do much of the work taking care of those with the fatal disease. But friends also help and play an important role in trying to keep those with the disease active and involved in the things they enjoyed before Alzheimer’s took its hold.
Don’t be afraid when your friend is diagnosed with Alzheimer’s.
When a friend with Alzheimer’s doesn’t recognize you it’s natural to pull back, according to the Alzheimer’s Association.
But try not to. People with Alzheimer’s and their caregivers often feel forgotten and isolated when friends stop visiting.
Spencer said it is not easy to learn their friends have Alzheimer’s and to watch as memories evaporate over the coming months and years.
Spencer encourages people to include their Alzheimer’s friends in the activities they have always enjoyed together.
Alzheimer’s experts recognize that often takes some work and adjustment.
In organizing the bingo games, Spencer adapts her behavior to fit where her friends are in the progression of their disease.
“The person with Alzheimer’s is still a loving, caring person,” Spencer said, but there are changes in how they remember you, their past and their environment.
She follows some basic rules when dealing with those suffering from Alzheimer’s.
“I always call them by their name,” she said.
If she sees the friend doesn’t recognize her, she repeats her own name and says it isn’t a problem that her friend can’t remember, offering up that her own memory isn’t what it used to be.
“I also try to compliment them on something,” she said. “Whether it’s their clothing, their nails, their hair.
“It’s treating them as if they’re in the real (our) world,” she said. “They’re not less of a human being...because they have Alzheimer’s.”
As the disease progresses, the memory loss becomes worse and the things they can do become fewer, Spencer admits.
“You learn that the person you knew and did things with is no longer there,” she said.
Their memories fade, she said, “but that’s OK because I still live with and have those memories (of them).”
Meanwhile, for most people with Alzheimer’s, life goes on and so do the joys in life.
While it’s upsetting to see a friend succumb to the effects of the disease, those afflicted are usually less concerned about it than those having to see it.
Most of the people with the disease can still enjoy life if they have the support they need, according to Teepa Snow, founder of This Positive Approach to Care and a North Carolina-based expert in Alzheimer’s care.
In the early stages of Alzheimer’s, those with the disease can still enjoy most of the activities they enjoyed before, Snow said.
People with early-stage dementia can meet with friends to enjoy such things as arts and music, interacting with children and animals, a day-long outing, or reminiscing and looking at old photographs, Snow said on her website.
Some things, however, might have to be adjusted, such as playing checkers instead of chess or less complicated board games.
People with mid-stage Alzheimer’s might have the social and cognitive skills of a child, Snow explains in her videos and website. But friends can still enjoy passive activities with them like television, but also active ones, similar to those enjoyed by young children.
If you have a friend with late-stage Alzheimer’s you can still read to them. They may not understand the words but can recognize a soft and comforting tone. You can also do things such as brushing their hair or holding their hand.
Spencer said it’s important to remember that for those with Alzheimer’s, “everything is in the moment.”
Spencer suffers from cerebellar degeneration, which means that there are degenerative changes to her cerebellum. As a result her speech is slurred and she struggles with fine motor skills. She no longer drives but uses a stroller or electric cart to get around. She does not have dementia.
One of the bingo players under Spencer’s watch was Jane Buchanan, 90 years old and a former Sears and Roebuck bill collector. She and her husband moved to Grand Living in August 2017. He died a few months later and soon after that she had trouble remembering where she lived and how to get to her apartment. Two months ago her family moved her to the memory care unit.
“I’ve known this girl for a long, long time and she’s a sweetheart,” Buchanan said, looking and pointing at Spencer.
“Hey Bobby, hey Bobby, hey Bobby,” Buchanan shouted toward Spencer.
Spencer turned and told Buchanan how nice it was to see her again and how special she was and how glad she was that Buchanan could join them for bingo.
Buchanan doesn’t remember when she moved to Grand Living or when she moved to the memory care unit. She also isn’t sure why her family moved her out of the assisted-living portion of Grand Living.
“Because I am diabetic and have some other health issues, they thought they could take better care of me here,” Buchanan said.
Asked by a Chronicle reporter if she suffered any memory problems, she replied, “don’t we all forget things…but no, not really.”
Before the group’s four rounds of bingo, MaryLou Coxon maneuvered pieces of an unfinished puzzle in the memory unit’s common room.
“I read a lot too and I visit with the ladies,” she said, a broad smile across her face. “I have two daughters and one son. I have a daughter that’s a judge. My son was hit by a car when he was young…he broke his leg…but he’s OK now. He lives in a condominium in St. Paul.”
She knew the names of her children but didn’t remember when she moved to the memory care unit. (She moved in February 2018.)
“I worked for Traveler’s Insurance,” she said. “And I used to show Siberian huskies.”
She knows she was born Oct. 22, 1937, but didn't say how old she was.
“I’ll let you figure that out,” she said, smiling.
Asked about her memory, she said, “I must forget things but I don’t worry about it.”
Asked where she lives, she replied, “I think I live on this side (of Grand Living). I think.”
“I was married over 50 years. He’s passed away,” she said of her husband. “We had a wonderful marriage. We were married for 50 years. We have three children. I have a daughter that’s a judge…My son was hit by a car when he was young …but he’s OK now. He lives in a condominium in St. Paul,” she said again.
Asked if she had any memory problems, she replied “Memory loss? Not that I know of.”
Asked what she thought of her life, she replied smiling, “I don’t have any big complaints.”
Asked about how her puzzle was coming along, Coxon replied that she couldn’t remember. “But it’s not important.”
Maintaining relationships
Some of the memory-care residents get regular visits from family and friends. Others rarely see anyone come.
It is important that people diagnosed with dementia still maintain relationships with their friends, said Debbie Selsavage, founder of Coping with Dementia LLC.
Selsavage estimates that at least half of friends cut ties when someone they know gets dementia. People often feel uncomfortable around people with Alzheimer’s disease and are afraid they might be dangerous, she said, adding that it’s also distressing for most people when they see their friends losing their memories or unable to join in on activities.
“At that point a lot of people leave their friends…thinking, ‘If I walk away I won’t have to deal with it. I won’t have to watch it,’” Selsavage said.
People also tell themselves that there’s no use in visiting friends with Alzheimer's.
“People think ‘they don’t know I’m here anyway,’” she said. “'There’s no use.'”
But Selsavage said that the person with Alzheimer’s needs and wants many of the same things we all do. But in their case, those needs have been reduced to the essentials.
“They need to know they’re safe; that they’re cared for; and that they’re loved,” Selsavage said.
In most cases, if those with Alzheimer’s have these needs met, they are generally happy and not overly concerned about not being able to remember many things.
Part of meeting their basic needs is the consistency of having friendships, Selsavage said.
“They’re still in there and they would love to see you,” she said.
A 2008 study published in the American Journal of Public Health reported that older women who had a large network of friends reduced their risk of dementia and delayed cognitive impairment.
More than 2,000 women were involved in the study, and those who had a larger social network were 26 percent less likely to develop dementia than those with smaller social networks.
Other studies suggest that social networks don’t have any effect on the physical pathology of the brain with Alzheimer’s -- the disease continued to destroy the brain. But those with greater social networks had higher cognitive abilities, despite the deterioration, the studies showed.
What’s the difference between dementia and Alzheimer’s?
Dementia is a symptom, not a disease. Dementia is an umbrella term and Alzheimer's disease is a disease the falls within that term. The most common form of dementia is Alzheimer’s disease.
But Alzheimer’s disease is not the only form of dementia.
Other forms include such things as vascular dementia, which is caused when blood to the brain is restricted. That often happens during small strokes.
Another form is Lewy body dementia. This type of dementia is caused by abnormal deposits of the protein alpha-synuclein in the brain. The protein interrupts chemical messages in the brain and causes memory loss and disorientation.
There are also suspected links between diabetes and dementia.
When the brains of people suffering from diabetes were examined, researchers saw higher levels of a protein named beta-amyloid, which is found in plaques and tangles in the brains of those with Alzheimer’s dementia. Excessive beta-amyloid is believed to cause oxidative stress that leads to cellular brain damage.
Researchers also found that people with even an elevated blood sugar level -- but still below the diabetes range -- had an increased risk of dementia.
Learn to communicate on their level.
With no dementia cure in sight, Selsavage thinks the focus for now should be placed on care.
“From the person that doesn’t have dementia it’s an extremely rewarding thing to go into a memory care unit and make someone smile,” she said.
But it’s important that friends learn new ways to communicate with those suffering from dementia.
Selsavage tells people to frame questions in simple terms that require simple answers. Don’t ask open-ended questions. So instead of asking what they had for lunch, ask instead if they enjoyed their sandwich. Compliment their outfit rather than asking where they bought it. Introduce yourself and ask them their name.
Asking those who have Alzheimer’s questions that they can’t answer sometimes makes them confused, defensive and afraid, she said. Focus on the things that the Alzheimer’s patient can still do instead of the things they can’t.
Dementia patients focus on how they feel emotionally at the moment. In contrast, people without dementia are usually logical and use reasoning skills. As a result, many non-dementia people “don’t know what to say” to a person with dementia, Selsavage said.
In many cases for those living in memory-care units, the staff are the people residents see the most often.
When the Grand Living memory care residents play their bingo games, it’s the staff that helps those with a difficult time identify letters and numbers.
“That’s all they really want: attention and patience,” said Pam Brooks, a health-care worker at Grand Living.
Brooks, 37, has been working in home health care for the past five years.
“I have four kids and with four kids you learn to be patient,” Brooks said, smiling.
Brooks hovers over those in the memory care and carefully helps with their bingo cards. When they find the numbers and letters on their own, Brooks tells them quietly they’re doing a good job, placing her hand on their backs and continuing to encourage them.
“I love it,” she said of her job and helping others.
Mindy Bishop, 36, is also a health-care worker in the memory care unit.
It is not a job for everyone, she said.
But seeing the residents respond positively and how she’s made their lives better makes the work worthwhile, she said.
Bishop has also worked several years in the home health care industry and with seniors with memory problems.
It takes time and experience to work with people with memory problems, Bishop said.
One basic rule is to take your cue from the resident, she said.
“You let them talk first and then you go along with what they say,” she said.
Sandy Dunham, 82, is also a resident of Grand Living. She and her husband still drive and live independent lives. She has no memory issues.
Dunham also volunteers at the memory care unit and helps with bingo.
Maintaining friendships with those who have Alzheimer’s is important, but Dunham said she understands why it’s painful to see those who can’t remember.
“I don’t want them to miss out on stuff,” she said.
Her niece has early onset Alzheimer’s. So did her father-in-law before he died.
A friend in New Jersey also showed signs of the disease. They corresponded for a while afterward, but the letters finally stopped.
Dunham thinks that people who avoid interacting with those with Alzheimer’s do so because they’re reminded that it could happen to them, too.
Neither Dunham nor Spencer fear getting dementia. They both say that’s perhaps the case because older age has given them some perspective as to what to fear about the next stages of life.
“I don’t worry about it,” Spencer said. “Each day to me is special. I live in the moment. I live in today.”
Meanwhile, the number of people with Alzheimer’s disease in the United States is expected climb to nearly 14 million during the next 30 years, according to the Fisher Center for Alzheimer’s Research Foundation.
Some studies also suggest that the increase in the number of people with Alzheimer’s isn’t only rising because of the population growth, but also because of an increase in the incidence of Alzheimer’s disease. Alzheimer’s researchers don’t know what might be causing the Alzheimer’s rate to be climbing.
But as the numbers increase, Selsavage said society better brace for it and learn to better take care of those with he disease.
“This is not a plague, but it is coming and it’s a tsunami,” Selsavage said. “And it’s huge.”
While that happens, friends and people familiar to those with the disease have an important role.
“There needs to be that interaction,” she said. “Their role is very important in the lives of the person with dementia.”
https://www.chronicleonline.com/news/health/those-with-alzheimer-s-disease-need-friends-family/article_0e85e1b2-ce2e-11e8-86a5-a76db4752df8.html
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