Those interested in learning more about Alzheimer's disease had the opportunity to do such May 16, when JT Hunter and Wendy Hamilton, both of the Alzheimer's Association, paid a visit to New Martinsville Center, which was actively recognizing National Nursing Home week.
Ken Stewart, admissions director of the center, stated that NMC decided to invite other people to take part in "Support Your Cause Day," which was that Thursday at the center. Hospice Care, the Wetzel County Ministerial Association, Amenysis, and West Virginia DHHR were all on-hand at the center's recreation area for residents and members of the public alike to inquire more about each organization.
Those of the Alzheimer's Association were the day's speakers; Hunter spoke on behalf of the association, referencing his own connection to Alzheimer's disease. Although Hunter actually graduated from Marshall University with a degree in Criminal Justice, he became involved with the Alzheimer's Association after finding out his own grandmother had the disease.
Representatives from West Virginia’s Alzheimer’s Association appeared May 22, Support Your Cause Day, at New Martinsville Center to give a presentation on Alzheimer’s Disease.
Hunter later noted he has worked hard to make sure that he uses this connection to help spark change in West Virginia when it comes to Alzheimer's disease. "I am proud of my grandmother and I am proud to say she has made me who I am."
During the Alzheimer's Association's presentation at the rehab center, Hunter noted that the disease has been in "our history for a long time, dating back to the days of William Shakespeare . . . Looking at some his writings, we can see he's referred to Alzheimer's disease."
Ralph Waldo Emerson also had Alzheimer's disease. However, "really up until 1976" people with the disease would have been described as being senile or crazy. "It wasn't until the late 1970s, university and medical people were saying this was a disease, and people aren't just crazy," Hunter said. "There is a difference between dementia and Alzheimer's," he added.
Hunter stated that dementia is an umbrella term. "Under that umbrella, you'd have certain types of dementia. For instance, Alzheimer's disease is one type of dementia . . . It's one of those most commonly diagnosed forms of dementia." Hunter stated, "The reason I'm telling you this is because certain types of dementia can be caused by certain things. For instance, it can be caused by severe dehydration." Hunter also added that certain medications could even cause dementia.
"Alzheimer's unfortunately cannot be reversed or corrected totally, but if we get under the surface of dementia, to know which dementia we are dealing with, it gives us a better route to treatment," he said.
"You may have heard that Alzheimer's disease is called an old person's disease," Hunter stated. He added that the prevalence is higher with age. "I can even give you statistics. They say at age 65, one in nine will develop Alzheimer's disease. By the time you are 85, they say that will be a one in three chance.
"What I do want to tell you also, is that it isn't just an older person's disease just because it's more common in a person 65 and older." Hunter explained that Alzheimer's disease in a person 65 and younger is referred to as "Younger onset Alzheimer's," with the youngest person to get Alzheimer's being 36.
Hunter stated that Alzheimer's disease is progressive: "It keeps going; it may keep getting worse . . . it's degenerative; it's a physical disease that is ultimately fatal." He added, "What I mean by that, is there is no cure for it. They may pass away from something other than Alzheimer's disease, but if it truly is Alzheimer's disease, it really is a process of the body slowly shutting down.
Hunter also described plaques and tangles, which are two abnormal structures that are "prime suspects" in damaging and killing nerve cells. Both are proteins. Plaques build up in the spaces between nerve cells, whereas tangles build up inside cells. Though most people do develop plaques and tangles as they age, Alzheimer's patients tend to develop far more. Most experts believe these structures play a role in blocking communication among nerve cells and disrupting processes that cells need to survive. Hunter stated that these structures break off important "connectors and switches" in the brain that control things such as telling a person to go to the bathroom or telling a person they are hungry. Also, Alzheimer's disease starts at the front of the brain, where short-term memory is.
Hunter said that just because one person possesses the warning signs of Alzheimer's disease, it does not definitely mean he or she has Alzheimer's disease. "It means something's going on that's not normal aging, and you should get it checked out. I'm not saying you have Alzheimer's disease. It's normal if you walk into a room and forget why you came there or forget someone's name. At that point, sometime in the day, it may come back to you when something else is going on."
One warning sign is short-term memory loss that disrupts daily life, while another warning sign could be forgetting an old family recipe that one has done several times. "It's going to become harder and harder to follow those steps . . . that may be an indicator something is going on."
Another warning sign is vision issues. "Someone with Alzheimer's disease will have spacial issues and depth perception. Something that can happen early on and can be an indicator is a couple of falls." Additionally, a person with Alzheimer's can find their way to a very familiar place, such as church or the beauty parlor, but might not be able to find their way home.
He also said, "Typically in a marriage there may be certain duties a spouse takes on, such a mowing the yard, balancing the checkbook, or paying the bills . . . If you notice that all of a sudden, the checkbook is not being balanced right, or you are finding unpaid bills, this is probably an indicator of something going on, because the brain is making it harder to follow those steps."
Be alert for decreased or poor judgement as well, Hunter stated if a loved one is believing informercials-"buying the line of those" or "sending money in large amounts to the late night reverends on television . . . giving large amounts of money to neighbors" and "having mood swings,"-that may mean something is going on that's not normal.
Hunter stated that right now as we know it, "in West Virginia, 40,000 people in West Virginia are diagnosed with Alzheimer's . . . it's entirely bigger than the city of Huntington." He added that with baby boomers just turning 65, the projected amount of cases will be 50,000 in the next 20 years. "I want to tell you . . . I've been fortunate enough to work with people with younger-onset Alzheimer's. They look just like us and talk just like us. They still have kids in the home, working to support a family."
Hunter stated that he is always asked if Alzheimer's is hereditary. "The most common form of Alzheimer's is Alzheimer's in persons 65 and older, and at this time, as we know it, there's no heredity link." However, Hunter said that younger onset Alzheimer's, in persons under 65, does possess a heredity link. Hunter recommends a complete and thorough work-up, a CT scan, MRI scan, questions, a mini-cognitive examination, and a talk with very close family is important for a 90 percent proper diagnosis.
Hunter stated that there are four medications to treat Alzheimer's disease: Aricept, Exelon, Razadyne, and Namenda. Exelon is in the patch form and Aricept, Exelon, and Razadyne are all in the same class of drugs. Therefore, if a patient is to take two medicines, they should take one of the first three, and combine it with Namenda. Hunter stated these medications are not going to cure Alzheimer's, but they will halt the progression of the disease for a while or slow it down for a certain amount of time.
Hunter said Alzheimer's patients he has conversed with describe Alzheimer's disease as "having white spots in the brain sometimes" and "having a lot of confusion." The result is to be confused one moment and very clear the next. "We don't know when it's going to happen, so always assume (patients) know what you are saying, assume they can hear what you are saying," said Hunter.
He noted that besides the "twisting and tangling," there is something else going on too: retrogensis. "What's going on, is that the more this disease progress, that person is going back in time in their mind." Hunter noted that this begins with short-term memory. "They may forget what they had for lunch; they may forget your name, but they may remember long-term . . . They could tell you about when they were a child, where they grew up."
Also, what a person is talking about could reference how they are feeling. "Maybe they are talking about a person who has passed away a long time ago, but there's an indicator of where they are in their mind." Hunter stated that a person who wants their mom may be frightened and scared.
Furthermore, "saying that they want to go home . . . the home they are talking about may not be a physical place. What it may be is the emotion and the sense of safety . . . Sometimes it's the emotion behind the words; maybe it's not exactly that word. Maybe he or she needs to hear 'It's okay. That's okay. I love you."
A patient with retrogenesis may be in the time they are married, or "some may go back to when they are a very small child." Hunter said that unfortunately, a patient may go as far back as prior to when a caretaker existed, but "keep in mind the clues they talk about." Hunter said usually the person is looking for a younger person, especially with adult children."
However, despite the reality, Hunter says, "They are right. We are wrong. Whatever they tell you is right, 100 percent true. Don't correct them. There is no need to correct them." For instance, "If they say 'I saw Bill today," and you know he's not there . . . in her mind, she 100 percent saw Bill today." Hunter said in this case, a character should ask how Bill is or respond with "That's nice."
He warns it will add conflict if you try to argue. "If you tell them Mom and Dad has passed away, that will devastate them." Hunter says that if a caregiver doesn't agree, a patient could very well forget about their caregiver and forget what they said, because "That's what they will remember . . . the essence of you . .. the way you speak to them and make them feel." If you don't agree, they are going to forget your name and forget what you said.
If a patient tells a caregiver things that aren't true, the caregiver should act as if their loved one is telling the truth. For instance, if a patient claims there is a spider on the wall, the caregiver should walk up to the wall and "kill" the spider.
Doctors usually say that a person with Alzheimer's has an average of eight years to live. However, Hunter notes, that if a patient is otherwise, physically healthy, that number can range from two to 20 years.
However, Hunter also notes that Alzheimer's disease is the fifth leading cause of death in West Virginia; Alzheimer's is "the only" rate that goes up.
Caregivers need to take time for themselves. Hunter stated that when a person starts caring for a loved one with Alzheimer's, they may end up forgetting about themselves or making themselves a last priority.
Hunter explained that 80 percent of care for a person with Alzheimer's is provided in the home by family caregivers. Also, 75 percent of baby-boomers are responsible for their parents' care.
"We take care of our own," he said. "We keep it to ourselves"
Hunter said that one thing the Alzheimer's Association does in their support groups is to make caregivers promise to try really hard to do something for themselves that day. Hunter said that caregivers can get tunnel vision, though as to himself having tunnel vision, he noted, "It's my grandmother's fault. She raised me this way."
The West Virginia Alzheimer's Association offers support, counseling, and education on what the disease is, but also . . . "we are with you through the whole process . . . this disease is ever-changing, so we are there for you through your process and whole journey."
The association has a 24-hour toll free number, 1-800-272-3900, and a live-care consultant will always be available to talk. They also have a website, www.alz.org/wv that is helpful.
"I will tell you that we'll stand by you through the whole journey. We provide family support and education," finished Hunter.