Family Living Focus: Detection of Alzheimer’s Disease
Dementia itself is not a disease, but rather a set of symptoms that accompany specific diseases. Dementia is a general term for the loss of memory, language and recognition that is severe enough to interfere with everyday life. Researchers believe dementia may be caused by a combination of genetic and environmental factors. Some diseases that cause dementia are irreversible and include Huntington’s disease, Pick’s disease, Parkinson’s disease, Lewy body dementia, multi-infarct dementia and Alzheimer’s disease (AD), the most common form of dementia, accounting for 60-70% of the diagnosed cases.
An estimated 4.5 million people in the United States have dementia. On average, patients with AD live from 8 to 10 years after they are diagnosed, although the disease can last up to 20 years. The disease usually begins after age 60 and the risk increases with age. Younger people may get AD; however, it is much less common. Ten percent (10%) of Americans age 65 and older have AD and it affects fifty percent (50%) of Americans age 85 and older. AD is one of the most feared mental disorders because of its progressive and relentless attack on the brain. Despite its prevalence, dementia may go unrecognized or be misdiagnosed in the early stages of the disease.
According to the Alzheimer’s Association and current national studies, there are many reasons to support the early detection of AD. An early diagnosis is crucial because that is when the most can be done to slow the progression of symptoms. In addition, early treatment can have a considerable effect on maintaining a patient’s current level of functioning. An early and accurate diagnosis can also help to identify reversible conditions that may mimic dementia such as depression, medication side effects, substance abuse, vitamin deficiencies, dehydration, bladder infections or thyroid problems. An initial assessment can avoid the trauma of a diagnosis of dementia where it does not exist. It also prevents unnecessary and possibly harmful treatment resulting from misdiagnosis. Other reasons include:
Identifying the cause of dementia leads to proper care and allows patients a greater chance of benefiting from existing treatments.
Early diagnosis can help resolve the anxiety that accompanies noticeable, yet unexplainable changes in behavior.
Educating persons with dementia and their caregivers gives them time to develop advanced care planning.
The quality of life for both the patient with AD and the family can be maximized.
The earlier the treatment, the better the chance of a favorable response to treatment, the longer the delay of progressive symptoms and the less financial cost overall.
There is no single diagnostic test to detect whether a person has Alzheimer’s disease. However, diagnostic tools and criteria have been developed in recent years to make a clinical diagnosis of AD with an accuracy rate of 85-90%. The factors used to complete a diagnosis include:
• Medical History
• Mental Status Evaluation
• Physical Examination
• Neurological Examination
• Neuropsychological Evaluation
• Brain Scans
• Laboratory Tests
The assessment of AD might begin with a memory screening test in the primary care physician’s office and then the patient may be referred to a neurologist, neuropsychologist, a geriatric psychiatrist or other specialist trained in the diagnosis of AD for further testing. Caregivers and family members are essential to the process of diagnosing early-stage Alzheimer’s disease. They may be able to supply valuable information and validate or deny the patient’s own reports.
A diagnosis of Alzheimer’s disease usually falls into one of three categories:
1. Probable Alzheimer’s — indicates a physician has ruled out all other disorders that may be causing the dementia.
2. Possible Alzheimer’s — indicates the presence of another disorder that could be affecting the understood progression of Alzheimer’s. The disease process appears different than what is normally seen; yet Alzheimer’s disease is still considered the primary cause of dementia symptoms.
3. Definite Alzheimer’s — this diagnosis can only be made at the time of an autopsy because it requires examination of actual brain tissue. An autopsy can confirm the presence of senile plaques and neurofibrillary tangles in the brain, which are the characteristic lesions of Alzheimer’s, to diagnose the disease with 100% accuracy.
Delay of Diagnosis:
Amazingly enough, there is a significant percentage of caregivers who are told, upon bringing their spouse or relative to the physician, that their decline is due to ‘normal aging.’ We now know that dementia is not a normal part of the aging process.
It is strongly recommended that persons experiencing any dementia-type symptoms should undergo diagnostic testing as soon as possible. A delay in diagnosis allows for a missed opportunity for treating the patient and also increases the chances for other problems and demands to multiply for the caregiver. For example, since AD affects memory, patients are at risk of not complying with the treatments that are necessary for problems such as diabetes, high blood pressure, mental health disorders and infections. A health crisis can then develop, compound the effects of dementia and lead to emergency care or hospitalization.
Caregivers may initially hesitate to bring a loved one with dementia to the physician. Researchers found that it takes an average of 30 months from the time family members notice the first changes and symptoms of dementia for the person to be diagnosed with AD. Reasons cited by caregivers were: lack of knowledge about AD, they did not imagine that the changing behavior was part of an illness, they were unsure what type of doctor to see or how to describe symptoms, they felt overwhelmed with the burden of caregiving or they feared that the illness was truly AD. Many caregivers have reported that prior to the diagnosis, they were nearly overcome with anxiety as they watched their loved one deteriorate. Once the diagnosis was made, they felt a great sense of relief and were finally able to name the disease and move forward toward a plan of care.
There are several other reasons that contribute to a delayed diagnosis of AD. Early symptoms are often disregarded, mistakenly attributed to aging or even misdiagnosed. Sometimes people with dementia are unwilling to have their mental abilities evaluated, are defensive, or in denial of the changes that are occurring in their lives. Physicians may not feel comfortable dealing with memory loss issues, may not be trained to administer cognitive tests or are reluctant to place a patient in an uncomfortable testing situation. Patients with high intelligence may be able to score above average on screening tests (despite cognitive decline) and compensate for or even mask their symptoms during the office examination, thus leaving the physician without sufficient evidence to provide a diagnosis. This is the point where caregivers play an important role and can provide the most valuable data to support the possible diagnosis of Alzheimer’s disease.
Although there is no cure for AD, new and improved treatments are on the horizon and offer hope. Most health professionals feel that the best plan of treatment includes a combination of medication, changes in lifestyle and support, along with a goal of managing symptoms that affect memory, thinking and behavior. There is a growing interest in the use of non-medical interventions that may be effective on their own or used in combination with medications. These interventions may include memory and communication aids, speech therapy, behavioral therapies, memory stimulation therapy, exercise, adequate sleep and education. The environment also strongly influences the health and capabilities of persons with AD; thus, it is important for caregivers to pay attention to safety factors, reduce stimuli and adjust the surroundings to accommodate the disease.
AD changes the brain in many ways, which results in a decrease of acetylcholine levels. It is believed that acetylcholine is a chemical messenger that is important for memory, thought and judgment.
It is important to understand that medication alone cannot stop the disease and medications do not work for everyone. For those who are helped, the effects may be only modest or temporary. Treatment with medication may help prevent symptoms such as depression, sleeplessness or wandering from becoming worse for a period of time and can help keep behavioral symptoms under control. Periodic monitoring and testing of a patient’s functional and cognitive abilities is also recommended. These results may offer encouragement to the patient’s family and can serve as a guide for doctors, patients and families in planning for the future.
Caring for a person with AD can be likened to driving on an unfamiliar road, riding a roller coaster or even walking on a tightrope. It can be an incredibly stressful ride, yet rewards can also be visible. The key is to balance your own needs against those of the person you are caring for day to day. Many caregivers find that they are stronger than they ever thought possible and that they feel rewarded knowing they have stayed committed to helping a loved one during the difficult years.
Caregiving can produce a great deal of stress that can lead to physical decline and emotional exhaustion. The health of caregivers is at risk, yet they often become the ‘hidden patients’ while focusing all of their attention on the person with AD. Caregivers need to keep their own health in check and visit their doctor on a regular basis. Support systems must also be alert to signs of caregiver burnout or depression and plans must be made to provide respite to the caregiver. No one can do it all alone. It is heartbreaking to watch a loved one go through the stages of Alzheimer’s disease and caring for them requires an abundance of courage and strength. Asking for help and taking care of yourself cannot be overemphasized.
Consider care options such as in-home respite care, adult day programs, home care services, delivered meals programs, or chore services. Keep a personal journal of your journey or a medical journal to record helpful information for yourself and the physician. Continue with activities that are enjoyed. Maintain a network of support and communicate your needs to family members, friends, volunteers, and organizations to avoid isolation. Join a caregiver support group to find hope, gain valuable information from people who understand your position and learn new ways to cope with the challenges you face.
Alzheimer’s disease impacts the whole family. Like a pebble thrown into the water, the ripples of the disease touch the lives of everyone. The signs and symptoms of AD can’t be ignored! Early detection and current treatments can help maintain or even improve memory, thinking and behavior problems plus support the quality of life for persons with AD and their caregivers.
Information adapted from article by Kristine Dwyer, Staff Writer in the Caregiver Newsletter, Wednesday, November 27, 2013 – Issue #666.
If you would like more information on “Detection of Alzheimer’s Disease” contact Gail Gilman, Family Life Consultant, M.Ed., C.F.C.S. and Professor Emeritus – University of Minnesota at firstname.lastname@example.org. Be sure to watch for more Family Living Focus™ information in next week’s paper.