Number of patients, caregivers continues to grow
By Rhonda Dedyne
Educators and caregivers frequently use words like “horrific” and “insidious” to describe the pain that is endured by individuals suffering from Alzheimer’s Disease.
Stories about the disease and the devastation it wreaks are part of the daily news that flows from mainstream media outlets.
An assortment of recent books detail both the clinical aspects of Alzheimer’s along with personal accounts by family members.
Given all that, Alzheimer’s is still a disease without a known cause – or cure.
There is hope, however.
The very fact that Alzheimer’s has moved from the shadows into the public eye is welcome news for professionals in the field and family members who are watching loved ones suffer each and every day.
“Research efforts really started to take off in the 1980s, and today we have some public policy and programs to help people cope with Alzheimer’s,” says Dr. Eileen MaloneBeach, Coordinator of Gerontology Programs at Central Michigan University. “Prior to the ‘80s, individuals and families dealing with the disease were so isolated – there is much more public awareness today.”
A partial reason for that increased awareness is the fact that Alzheimer’s touches the lives of so many people – and those figures are skyrocketing.
The number of Americans with Alzheimer’s has more than doubled since 1980, increasing to an estimated 4.5 million.
By 2050, that number is expected to range from 11.3 to 16 million.
Nearly 50 percent of all nursing home residents have Alzheimer’s or a related disorder.
A recent Gallup survey cited 1 in 10 Americans saying they have a family member with Alzheimer’s, and 1 in 3 knowing someone with the disease.
Statistics in and of themselves are meaningless. It’s the very real sense of despair that Alzheimer’s causes in the lives it touches that creates the biggest impact.
“The person they’ve always known and loved is not the same – in a way, family members are grieving the loss of a person while they are still alive,” Monica Jarmolowicz, director of Isabella Adult Day Care says of the devastating and long-term effect Alzheimer’s has on caregivers. “They want to hold on to that person they know and love.”
That can be extremely difficult, particularly as the disease continues to eat away more and more of the person’s identity.
“It’s really awful – she can become so violent and angry,” Sheree Murray says about incidents with her mother who was diagnosed with Alzheimer’s two years ago. “The family suffers – she doesn’t remember doing or saying anything.”
Aggression, agitation, confusion, suspicion – all are manifestations of the disease. Each is challenging and frustrating for both the Alzheimer’s sufferer and caregivers, particularly since the emotions of the individual can shift so rapidly.
“It’s a horrific disease; made even more difficult for families to cope with because there is so much fluctuation within a day, hour or even minutes,” Dr. MaloneBeach says. “The lack of consistency and uniformity makes dealing with Alzheimer’s especially difficult.”
Murray has first-hand experience with that, and with the knowledge that the disease frequently is not easily detected in its early stages.
“At first, mom was able to pretty much take care of herself, but we always maintained contact to make sure she was okay, and helped her out with things she couldn’t do anymore,” Murray recalls about the decline of her mother that eventually led to placement at Tendercare in Mt. Pleasant.
As is often the case, a medical emergency accelerated the caregiver process for Murray when her mother fell and broke her wrist, and later was admitted to the hospital for treatment.
“She couldn’t remember how she fell – or even that she had fallen,” Murray says, adding that hospitalization led to the discovery of other physical ailments. “She was septic – she had a bladder infection and we didn’t even know it. In hindsight, there were other signs and symptoms prior to her falling that we didn’t relate as being the beginning of Alzheimer’s”
Those warning signs included hiding items, and then accusing family members of stealing them, and weight loss due to bad eating habits – or forgetting to eat at all.
The fact that the signals were not recognized is quite common, the CMU gerontology professor says.
“Alzheimer’s is behaviorally diagnosable,” Dr. MaloneBeach says. “A person suffering from Alzheimer’s may try to put their socks on their hands instead of their feet, or empty the contents of the refrigerator into the dryer – to say they’re confused is an understatement.”
The fact that early symptoms of Alzheimer’s are often explained by family members as being simply “forgetful” can add to the feeling of frustration and aggravation.
“Alzheimer’s starts so insidiously – it can be very difficult for a family to gauge,” the professor says. “Family members need to be aware of the signs and measure them over time. That can be critical to a diagnosis.”
While Alzheimer’s is diagnosable, going through the process can be difficult.
“Getting a diagnosis can be very painful for the family and the individual to accept, or it can be a great relief,” Dr. MaloneBeach says. “It’s not uncommon for family members to think they’re the ones with a problem – putting a framework around the disease can be helpful to everyone.”
Jarmolowicz agrees that obtaining information about the disease is a priority for family members.
“Education is very important so the family learns about the various stages and has an idea of what to expect. Family members will probably be in the front line initially as caregivers.”
Individuals with early stage Alzheimer’s can benefit from programs used at facilities like the one Jarmolowicz directs.
“We do lots of memory stimulation activities and communication techniques that are geared to whatever the individual’s interests are,” she says of the facility’s programs that began in 1997 and have expanded in the ensuing years. “Coping with Alzheimer’s is a big transition for the individual as well as the family members.”
Alexa Steed, associate administrator of clinical services at Masonic Pathways in Alma agrees.
“Like most senior housing providers, we realize that Alzheimer’s Disease and other related dementias are progressive diseases that do not always require ‘nursing home’ care,” she says. “That’s why we incorporate elements of our dementia programming into all the levels of care that we offer on campus. This allows us to provide the services residents need in the least restrictive environment possible.”
Long-term care facilities are also working to keep up to date on changing developments related to Alzheimer’s.
“We provide staff with training that enables them to better understand and manage the behaviors associated with dementia, such as wandering or unusual sleep patterns,” Steed says. “In addition to learning current treatment options, they also explore different communication techniques, the importance of environmental stimuli, and how to offer engaging activity options at the appropriate times throughout the day.”
A continuing growth in public awareness about Alzheimer’s is helpful for family members by providing additional support and ways to cope with the disease.
“We have made great strides in society in terms of caregiver help and support,” Dr. Malone-Beach says. “There are numerous web sites where people receive information and stay connected with other caregivers – information about Alzheimer’s is really part of the social fabric today.
“Just being able to say, ‘Mother is in the early stages of Alzheimer’s’ to a friend, and have that person understand what you’re talking about can be tremendously beneficial – the world is changing in terms of its awareness about the disease.”
Obviously, with no known cause for the disease and no cure in sight, there’s still much work to be done.
“Research has begun and it will continue, but right now we do not know what causes the disease,” the professor says, noting that environmental and genetic factors are contributing agents. “It appears that the early onset of Alzheimer’s in an individual may have a higher genetic component than late onset of the disease, but there’s still a lot of conjecture and much more research needs to be undertaken.”
Murray can relate to that, too. Her mother has an identical twin sister who has no signs whatsoever of Alzheimer’s. The siblings will celebrate their 80th birthday on Valentine’s Day.
“My mom still recognizes my aunt; she visits my mom frequently, but she will not remember having seen her after she leaves,” Murray says, adding that the presence of her aunt is helpful in many respects.
“I go to my aunt for comfort – she has all the stories about the family from years ago that my mom doesn’t recall anymore. I’ve really needed my aunt, especially after my dad died a few years ago – my mother does know that he is dead, but she doesn’t remember how or when it happened.”
Making a prediction about what the future holds for Alzheimer’s patients and their families is “a bit like predicting the weather,” MaloneBeach says.
“We may see that we are able to push back the age of onset gradually, but we will need to do that at a faster pace if we hope to make a difference in the number of people who are suffering.
“We need to find ways to stop that suffering.”
“Reprinted from the Mt. Pleasant Morning Sun and Used by Permission – Copyright 2006 (c) Morning Star Publishing Companies”