By Deborah M Walker
Silent, deadly and incurable Alzheimer’s reigns as one of the biggest threats affecting today’s aging population yet few know or understand this degenerating disease.
“There is currently nothing that will slow the disease down, stop the disease or cure the disease,” says Jennifer Howard, Executive Director of the Alzheimer’s Association Michigan Great Lakes Chapter.
Alzheimer’s can happen to anyone claims Robyn Heron, who lost her mother to Alzheimer’s. According to Heron her mother was the only one in the family to develop the disease.
This is not uncommon says Howard. There is a genetic component but that is not the case in all situation explains Howard. Testing positive for genetic markers does mean an increase in the risk of developing Alzheimer’s informed Howard. There is a certain type of Alzheimer’s where a certain sequence almost guarantees diagnosis but that it rare states Howard.
“There are people who have generic markers. They’re more likely to have the disease but it doesn’t mean that they will get the disease and then we have plenty of people who don’t have markers who get the disease,” says Howard. “It’s a combination of genetics, environment and lifestyle.”
There are other factors that may influence the development of Alzheimer’s explains Howard. According to Howard those who suffer traumatic injury to the brain and people who suffer multiple concussions are more likely to develop Alzheimer’s. Also, people who have diabetes and stroke are more likely to develop the disease Howard informed.
Women are also more likely to develop the disease states Howard. According to Howard 2/3 of people with Alzheimer’s are women. This is partially due to the fact that women live longer than men says Howard.
“The majority of the people with the disease, living with the disease right now are women. Their lifetime risk of developing Alzheimer’s disease is almost twice their lifetime risk of developing breast cancer.
Heron says her mother’s symptoms were typical of most Alzheimer’s patients. Heron says she realized something was wrong when her mother became forgetful and changes in her memory were obvious.
“She began asking the same questions over and over, that’s when we really started to become concerned,” says Heron. “She just wasn’t retaining it. She wasn’t retaining the information and that’s when it became a concern.”
Problems with memory are one of the first signs of Alzheimer’s informed Howard. According to Howard, Alzheimer’s first affects the area of the brain that controls memory. Eventually the disease will spread through other parts of the brain affecting long term memory, thinking and general cognition, mood regulations and bodily functions states Howard.
A good diagnosis is the first line of defense informed Howard. According to Howard there could be other factors affecting memory loss so it is best to rule those out first.
“The most important to start out with is just a good diagnosis,” says Howard. “So if someone is concerned about their own memory or the memory of somebody that they love it’s really important to get an accurate diagnosis and to make sure that we’ve ruled out any other possible causes.”
Get properly educated about Alzheimer’s will improve quality of life as well says Howard. Staying physically healthy, eating right and exercising is key claims Howard. Social activity and continued brain use is also necessary when battling Alzheimer’s informed Howard.
“If you don’t know the disease process and you don’t know what the future holds it’s pretty hard to plan for it,” says Howard.
Even with proper planning nothing can prepare a person for the psychological effects of Alzheimer’s says Heron. For Heron, watching her mother’s memory fade was difficult she recalls. Sadly her mother did not remember her wedding she attended.
“I got married when I was 22 so just out of college. I remember we had the wedding day, she was sick at that point forgetful but she still had a lot of her motor-skills she was dancing and moving and having a good time. We got married on a Saturday and on Sunday she came up to me and said well do you think that you’ll want to marry Mathew someday. She really had forgotten that had happened the day before,” said Heron.
Alzheimer’s robbed her mother of her experiences explains Heron. Heron says it was difficult to go through life without a woman’s perspective on special events like getting married or having a baby. She had to go to her mother for advice Heron remembers.
There were times when her mother would recognize her recalls Heron. Heron says she tried not to take it personally when her mother did not recognize her. She had to learn it was not her mother’s fault. Heron states her feelings were an honest reaction and most people feel that way.
“I logically knew that it wasn’t her fault, but personally you can’t help but almost feel offended,” said Heron. “How could you not remember me, I’m your kid?”
As the illness progressed caring for her mother’s basic needs became difficult Heron confessed. Unable to take care of her basic needs, Howell had to rely on others to care for her says Heron. According to Heron her mother her mother’s health declined rapidly.
Howell was also diagnosed with Frontal Lobe Dementia explains Heron. This caused Howell to lose motor skills as well as language informed Heron.
“She was losing the ability to do simple things like walk and drive, even speak,” said Heron. “Her language went very quickly. It was more like a toddler when they get frustrated and they’re trying to communicate something to you but they just can’t form the words for it.”
It was important for her mother to stay home with the family during her illness Heron stated. Heron says that her father Bob Howell became her mother’s caregiver. Heron recalls the concern she felt for her father’s health and well-being while taking care of her mother. Heron realized her father needed someone to talk to so she reached out to the Alzheimer’s Association on his behalf.
“Just with all caregivers once they are taking care of somebody as a full time job sometimes they forget to take care of themselves too,” says Heron.
ReShane Lonzo, owner of DRM Genesis, located at 3206 S. Pennsylvania Avenue, agrees with Heron. In any circumstance where there is a caregiver situation, Lonzo says it is difficult on the entire family and the reason why she started a home healthcare provider service. Lonzo states that she tries to make it easier for the families and works with them on a case by case basis. DRM Genesis offers the following services: license nursing care, errand assistance, companionship, in-home therapy, house keeping assistance and personal care assistance. She stated that they can also provide respite care for 2 hours up to 24 hours that can be purchased in various increments and given as gifts to caregivers.
According to Heron the Alzheimer’s Association was a great place for support and assistance. Heron says she enjoyed sharing stories with other people who have gone through the same thing. Heron states she knew she was not alone.
“Originally what I reached out to them for was to say we’re struggling with this certainly other people are too what resources are out there,” said Heron. “We really utilized the website and informational material which was good. Just to hear other stories. To get that feeling you are not alone.”
Heron became fully involved in the Alzheimer’s Association she says. Heron participated in the Alzheimer’s Association Walk for Alzheimer’s. Heron says she joined the Alzheimer’s Association Board of Directors Michigan Chapter last summer so she could educate herself on all aspects of the disease.
Heron made the right choice by reaching out to the Alzheimer’s Association informed Howard. The Alzheimer’s is a great place to start when reaching out for assistance Howard says. The Alzheimer’s Association can offer anything from a shoulder to cry on to care coordination Howard explains.
“We have made it a part of our mission to really understand. There is an entire network of people that can help folks with Alzheimer’s disease,” said Howard.
According to Howard there are many services and programs an Alzheimer’s patient or their family may need. Over time the situation will change and the patient’s needs will be different that is a good time to check back in says Howard.
“So a lot of times the family will call us and they don’t even know what they need,” said Howard. “They just know that they’re dealing with a really difficult situation and they’re not sure where to turn to for help. So we can talk to them about their specific situation and figure out what they might need.”
Howard says the Alzheimer’s Association can connect people and families to different programs and resources in the community. The Alzheimer’s Association can help with adult day care, in home health care, prescription assistance and education informed Howard. The Alzheimer’s association can provide a person with whatever help they may need states Howard.
Alzheimer’s usually strikes after age 65 although Younger Onset Alzheimer’s occur at an earlier age informed Howard. According to Howard 1 in 9 people over the age of 65 have Alzheimer’s, for older people the statistics are more daunting claims Howard. 1 in 3 people over age 85 have Alzheimer’s says Howard.
Her mother was young when she was diagnosed Heron remembered. Howell was only in her late forties when she was diagnosed says Heron. Howell was just 64 when she died informed Heron.
The challenging part of dealing with Alzheimer’s is there are no warning signs states Howard. Sadly brain changes have already started when a person starts to show symptoms Howard says. It can take several years for a person to be diagnosed after symptoms appear informed Howard. As people age it is important not to confuse forgetfulness with memory loss cautioned Howard.
“As people age they should not expect to lose their memories,” explains Howard. “Their memories will change they will be distracted more easily. They’ll misplace their keys a little bit more because of it. Their memory will be slower or it might take them an extra second to remember somebody’s name or remember a word their looking for or something but it does come back to them. That happens to all of us as we get older but they should never experience memory loss that is so sever it impacts day to day life.”
Although there is no cure for Alzheimer’s there is new research to suggest Alzheimer’s can be prevented claim Howard. Alzheimer’s may be prevented in the time between when brain changes start happening and symptoms first appear explains Howard.
“If we were able to identify people who have had these structural changes in their brain that have been happening they believe they can get in at that time and they can do an intervention that would stop the progression. So someone might have some structural change but they would never actually have symptoms of Alzheimer’s disease and that’s really where the hope and the research is today,” said Howard.
When diagnosed with Alzheimer’s it is important not to panic informed Howard. People are afraid of the disease claims Howard. There is a common misunderstanding that people with Alzheimer’s will be immobile and incoherent says Howard. This is not true stated Howard. According to Howard some people with Alzheimer’s actually understand their disease and they can participate in their care and planning.
“They’re wonderful active people with a lifetime of information behind them and they’re struggling more than the rest of us, but they’re coherent and they’re here and they know what’s happening. They have a lot to share,” stated Howard.
Even with an Alzheimer’s diagnosis the outlook does not have to be so glum says Howard. It is important to stay positive because the future is still full of possibility.
“Like any other diagnosis for a single disease it’s very devastating and it paints a picture for the future, but I think that the picture that it paints can be a lot worse than the picture that it is in some ways,” says Howard. “There’s so much joy remaining in life. There are so many really special moments and times to be had with somebody with the disease. Even through the end of the disease there’s still wonderful moments to be shared.”
Heron agrees. Try to find positivity in the situation stated Heron. Cherish memories and remember the good times Heron advises.
“It’s hard to do but find the humor in some of it. It’s very daunting. It just feels like your being robbed of somebody. You just got to hold onto those small things,” Heron said.
To find out more information about the Alzheimer’s Association and what they can do for you check out their website at www.alz.org.