West suburban experts and care centers provide hope and help for those suffering from Alzheimer’s and related memory loss conditions
A diagnosis of Alzheimer’s disease or another form of dementia may be one of the most devastating to receive. Learning that you will lose your ability to think, remember and function normally is almost beyond comprehension for all involved. Often, people dismiss early signs of dementia as simple forgetfulness or aging. But waiting to get a diagnosis and begin treatment can have adverse consequences in the long run. What experts in dementia want us to know is that all of us can help in the prevention, diagnosis and treatment of the disease.
Hope for Early Diagnosis
According to the Alzheimer’s Association, headquartered in Chicago, Alzheimer’s disease is the leading type of dementia, accounting for some 60 to 80 percent of all cases, but it isn’t the only kind. Other forms of dementia that the association identifies include vascular dementia following a stroke, dementia with Lewy bodies, Parkinson’s disease and mixed dementia. Alzheimer’s typically progresses slowly, damaging brain cells. Although early signs may be difficult to distinguish, a general decline in memory, thinking and reasoning skills, along with changes in behavior, may indicate dementia.
If you’re at all concerned about yourself or a loved one, the first step is to get a diagnosis. For most people, a visit to a primary care physician is the place to start. If dementia is a concern, the physician may provide a referral to a memory care specialist for a complete neuro-psychological evaluation.
The worst place to start is the emergency room. According to Jennifer Beckman, clinical therapist in the Gero/Generations Unit at Linden Oaks Hospital in Naperville, many dementia patients come to the behavioral health hospital for treatment via ambulance from Edward Hospital, after they were first taken there in a crisis situation. She explains that emergency room patients with agitation and other signs of dementia often are given a CT or MRI scan to rule out other possible medical causes, such as a urinary tract infection, before transfer to Linden Oaks for a complete evaluation.
“We really take a holistic approach,” Beckman says. For extreme behavioral issues, the patient may be prescribed medication to manage agitation. Beckman explains that it may take a week or two to get the medication to the optimal level to help the person regain control. She notes that the environment itself helps. “We provide a quieter, low-stimulating room,” and “person-centered care,” she says, which focuses on what the patient wants. When the patient is ready to be discharged, Beckman helps with referrals to appropriate resources, such as memory care facilities, nursing homes or home health services.
Although no treatments are available as yet to cure Alzheimer’s, early diagnosis can make a big difference in the progression of the disease, according to Dr. Concetta Forchetti, medical director of the AMITA Health Memory Disorder Clinic and Clinical Research at Alexian Brothers Medical Center in Elk Grove Village. She points to the ability to use PET scans to identify biological markers in the brain to accurately diagnose Alzheimer’s in its early stages, which also can help identify people at risk for developing dementia.
“We counsel patients who are at risk, but may delay progression time by taking better care of themselves,” says Forchetti, which includes getting more exercise, following a plant-based diet, socializing and stimulating the brain. Drugs to slow the progression of Alzheimer’s can also be given, although the results may be difficult to discern. She notes that their clinical research using PET scans to identify biomarkers, including amyloid plaque and tau protein tangles in the brain, has resulted in greater compliance among patients in making lifestyle changes, as well as improvements in disease management by physicians.
Hope for Prevention
The more we learn about disease progression of any kind, whether it be heart disease, diabetes, cancer or dementia, the more we understand that a healthy lifestyle is the best form of prevention.
Starting this year, the Alzheimer’s Association will conduct a national research study called the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk, known as U.S. POINTER. As Heidi Johnson, senior manager of research engagement for the Illinois chapter of the Alzheimer’s Association, explains, “The two-year clinical trial will test whether lifestyle intervention, focused on combining physical activity, healthy nutrition, social and intellectual challenge, and improved self-management of medical conditions can protect cognitive function in older adults who are at increased risk for cognitive decline.” In short, taking better care of your overall health may turn out to be the best way to avoid dementia. Hope for Treatment
Clinical trials of all kinds are perhaps the brightest hope for finding a treatment and a cure for Alzheimer’s and other forms of dementia. “What I would like the public to know is that research is never stopping,” Dr. Forchetti says. “There is a relentless dedication to expand our knowledge about Alzheimer’s to find a treatment.” Through AMITA, she is conducting research to evaluate different ways to remove tau and amyloid from the brain as potential prevention or treatment methods. She notes that the clinical trials are open to anyone who applies and qualifies for the study, and the PET scans and genetic tests are given at no charge to participants.
At the Alzheimer’s Association, which sponsors many clinical trials, Johnson says that the biggest need, after fund raising, is finding enough clinical trial volunteers. Both healthy people and those diagnosed with cognitive impairment are needed to participate in research studies.
The Chicago area is fortunate to have two of the 29 centers for Alzheimer’s research in the United States, which are designated and funded by the National Institute on Aging — Northwestern Medicine’s Cognitive Neurology and Alzheimer’s Disease Center and the Rush University Alzheimer’s Disease Center.
Clinical trials being conducted locally and nationally can be found online through the Alzheimer’s Association TrialMatch database at www.alz.org/trialmatch. A patient or a caregiver can create a confidential profile online to be matched with suitable clinical trials for new drugs or other therapies, if they choose to participate.
Dr. Forchetti encourages anyone with an interest in preventing Alzheimer’s to look into clinical trials, pointing to the past development of drugs designed to slow disease progression. “If we didn’t have people who accepted the challenge, we wouldn’t have those drugs. There’s a kind of heroic component to participating, to saying, ‘I’m doing this for my grandchildren.’ To me, those are all heroes.”
Hope for Life
Today, some 5.7 million Americans of all ages are living with Alzheimer’s disease, and that number is expected to rise quickly as the population ages. While there is no cure, there are ways to help Alzheimer’s patients and their caregivers achieve a better quality of life.
For caregivers of Alzheimer’s patients, finding help when needed is crucial. The Alzheimer’s Association offers a national hotline at 800 272-3900, which is directed to the region of the caller’s area code and answered 24/7 by a master’s-trained social worker or counselor. The hotline experts can provide answers to urgent questions, referrals and access to the association’s resources.
“The progression can last eight to 12 years. With some people, the progression goes more quickly. The physical burden of care becomes very high. At some point, people become dependent for all their physical care,” says Melissa Tucker, director of the Helpline and Supportive Services for the Illinois chapter. “It’s very common for caregivers to work themselves to death.” She observes that caregivers often feel guilty about moving the loved one into an assisted living or skilled nursing facility.
One critical service that the association offers is care navigation, an online assessment program to help people reach the right decision for patient care. The association also offers a medical alert safe return ID bracelet that directs calls to the helpline to identify a person who is wandering and lost. In addition, a variety of support groups for caregivers and early-stage patients meet throughout the suburbs. More information about the Illinois chapter’s resources can be found at www.alzheimers-illinois.org.
For people who have younger-onset Alzheimer’s, which is diagnosed before age 65, a special support group, run by the Rush Alzheimer’s Disease Center, meets monthly in Elmhurst. Here, people who thought they were too young to develop dementia are finding help and encouragement, together with their care partners. Support groups also are open to adult children and younger children of younger-onset Alzheimer’s patients. Their experience has been captured on camera in a documentary, “Too Soon to Forget,” which will be aired on public television. For more information on the medical and support services available at Rush, call Susan Frick, social worker, at 312 942-5359.
To better accommodate people living with dementia, new facilities designed specifically for memory care are springing up throughout the area, including Artis Senior Living of Bartlett, which opens in June, and its sister community in Elmhurst. The Bartlett community’s 64 rooms are divided into four “neighborhoods” of 16 rooms each.
“What makes our community unique are the neighborhoods, which are distinctly different from the outside, with different front porches, that look like home,” says Jennifer Navarro, social worker and director of partnership development at Artis in Bartlett. Each neighborhood has its own walking paths, dining room and family room. The entire development offers indoor and outdoor spaces open to all residents, including a large community room, beauty salon, art studio and patio in the center. Because Alzheimer’s patients tend to wander, the outdoor areas are all lighted, fenced and secured.
“We take a life-enrichment approach,” explains Navarro. “We don’t want to just keep people busy, we want to keep them engaged in activities they enjoy.”
Families complete a detailed questionnaire on the patient about their likes and dislikes and background so that the staff can provide activities that fit each person’s preferences.
Artis’ services are based on its overall philosophy of care, says Navarro, “putting residents first so they can have the best quality of life.”
The Alzheimer’s Association’s 10 Warning Signs
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, at work or at leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality