Alzheimer’s disease: The Silent Epidemic
“My Grandfather had Alzheimer’s. My Mother had Alzheimer’s. I’m now 58 and my father says I am showing the same signs my mother did.
I forget what I’m doing sometimes. Sometimes when I’m driving I look around and don’t have the foggiest idea where I am so far that has been only for short periods.
Sometimes when my grandchildren or my wife are talking to me I can’t understand what they are saying. It’s like they are talking too fast or are slurring their words.
I get tired and want to go to sleep in the middle of the day (every day). I make mistakes much more than I used to when working on something.
I have not been diagnosed with Alzheimer’s, but I admit it looks probable. What now?”
-written by “Gukwagi” on the Alzheimer’s Association Internet discussion board
The question posed by the above author is one that 4 million Americans face today.
According to the National Alzheimer’s Association, 14 million within 50 years will be asking, “what now?” after coming down with the disease, unless there’s a cure or treatment. The association describes it as “the epidemic of the 21st century.”
“It is a growing concern, you see a lot more of it than you used to,” said Curtis Gustafson, RN at Tahoe Forest Hospital’s extended care facility. “But I don’t know if it’s going to be an epidemic or crisis.”
Gustafson does admit that the growing population of elderly will increase the number of patients with the disease and said TFH holds special training, in-services, and works with residents with Alzheimer’s disease.
“We know this is going to be a problem on the horizon.”
What to know
after “what now?”
Alzheimer’s disease is a neurological disorder that usually affects people in their later years of life.
“People live longer than they used to a half a century ago and it’s a disease of aging, although people in their 30s have been diagnosed with Alzheimer’s,” said Cheryl Moore of the Sacramento Alzheimer’s Association. “The longer we live, it increases the chances of getting the disease.”
Other factors that increase getting the disease are few. Alzheimer’s is non-discriminatory. It affects all races, cultures and creeds. Women have a higher percentage of developing the disease, but that is usually attributed to the fact that women live longer than men, Moore said.
Although the cause of Alzheimer’s still eludes researchers, scientists believe that genetics only play a role in about 5 percent of cases, Moore said.
There is no way to 100 percent diagnose Alzheimer’s in people while they are living, although testing for Alzheimer’s using clinical diagnosis is now about 96 to 98 percent accurate, Moore said.
Clinical diagnosis includes urinalysis, blood work to determine iron deficiencies, Magnetic Resonance Imaging, CatScans and neuro-psychological testing of hand/eye coordination, small and large motor skills and memory. The process usually takes at least five hours and is done by a neurologist, Moore said.
“Another part of that is good caregiver logs – someone writing down changes in the patient. It really helps the doctors and nurses.”
Once a patient is diagnosed with Alzheimer’s, they have very few options for treatment.
There are only three FDA approved drugs for treating Alzheimer’s symptoms – rivastigmine (Exelon), tacrine (Cognex) and donepezil (Aricept) – and no cures.
“Each of the approved drugs for Alzheimer’s disease may have different side effects on individual people taking the medication,” said Bill Theis, Ph.D., Alzheimer’s Association vice president of medical and scientific affairs. “Having more approved drugs offers doctors, people with the disease and their families a greater opportunity to find one that will have some benefit with the fewest unwanted effects.”
Drug treatments are only effective for mild or moderate cases, Moore said. Severe cases are usually unaffected by drugs. Even for mild cases, drugs do not reverse the process. They mask it to a point where patients are no longer affected.
The effectiveness of drug treatment breaks down to thirds, Moore said.
“About a third of the people show some signs of reducing decline. Another third maintain their current level of function. And the other third the drugs have no effect (on).”
Besides the three FDA-approved Alzheimer’s drugs, there are some older neurological drugs that are still used as well, Moore said.
“It’s more or less a trial and error that patients have to go through for all the medications.”
Some of the experimental treatments being examined by doctors include estrogen, prevention using Ginko Biloba, gene studies and stem cell research.
Because of the lack of drugs, treatment focus for Alzheimer’s goes beyond medications.
“The treatment is pretty much trying to keep them as comfortable and as involved in doing things as possible,” Gustafson said.
TFH extended care activities director Jean Zweigle uses music, memory books, tactile blocks, and even laundry to keep Alzheimer’s patients busy.
“I’ve seen them fold these towels over and over again and they seem focused and happy for a while,” she said.
What care now?
Caring for Alzheimer’s patients is a “24-hour, seven day a week job,” Moore said.
Patients can wander or become delusional. The average cost of a care facility for a patient of the disease is $35,000 to $40,000 a year, which is why 90 percent of caregiving is done at home, Moore said.
Funding to provide training for caregivers is a “major problem” at local, state and federal levels, Moore said.
“We’re needing people desperately for home health and hospice,” said Renee Pfister, a TFH extended care LVN. “There’s a nursing shortage all over the country and it’s affecting us here, too.”
Care facilities are also less than adequate.
“We have a long way to go and no, we’re not prepared,” Moore said. “Even for those people who are well and are older and have outlived everybody they know, we don’t have enough housing for them, let alone those who are already in institutions that already have or will get dementia.”
At TFH extended care there are 35 beds, but only certain Alzheimer’s patients can be cared for there.
“We’re not a lockout facility that we can guarantee they won’t get outside and get hurt so we can’t take those kind of patients because of safety,” Pfister said. Wanderers or other difficult patients can find lockout facilities in Reno or Sacramento.
To answer the need of adequate information for caregivers and patients, Pfister is starting a local support group for people affected by Alzheimer’s.
“There’s a lot of dementia and Alzheimer’s patients in our community and people don’t know about the help that’s out there,” she said. The group will begin after a survey that was distributed two weeks ago is assessed.
“Even if we don’t have a support group going on right now, there are different places people can go to for information or referral,” Pfister said, pointing to the hospital’s wellness center and home health departments.
Support groups are good for people affected by Alzheimer’s so they don’t feel alone, so they learn more about the disease and to meet people, Pfister said. “And hopefully they would be able to develop some social relationships.”
For information about the Truckee Alzheimer’s Support Group, call program director Krista Gojenola at 1 (800) 779-5711.