Table of Contents
- Part 1 – How do I get a real expert diagnosis?
- History and physical examination
- Laboratory testing
- Part 2 – How do I decide if it is time for an extended care facility?
- Safety Issues
- Behavioral Issues
- Medical Issues
- Memory Issues
- Part 3 – What are the signs of caregiver burnout?
- Part 4 – What are the typical behavior and memory problems with Alzheimer’s?
- Mild Cognitive Impairment
- Early Alzheimer’s Disease
- Moderate Dementia
- Severe Alzheimer’s Disease
- What may not be Alzheimer’s disease?
- Warning Signs
This is a four part series on Alzheimer’s disease.
- How to get an expert diagnosis.
- How to decide if your loved one needs an extended care facility.
- What are the signs of caregiver burn out and how to handle it?
- What are the typical behavior and memory problems in Alzheimer’s disease?
This four part series purpose is to assist you in helping your loved one without causing you to jeopardize your health. It answers the most frequent questions asked
- How do I get a real expert diagnosis?
- What will happen next?
- Is this normal behavior for someone with Alzheimer’s disease?
- How can I keep my loved one at home?
- When do I know it is time to consider an extended care facility?
- What treatments options are effective and what are not.
Unfortunately one question I am asked rarely asked by the primary caregivers is, how can I get relief for myself?
Part 1 – How do I get a real expert diagnosis?
An article in the New England Journal of Medicine in April 2013, defines a dementia expert as one with extensive and specific training in dementia or memory loss.
History and physical examination
A comprehensive history and physical examination should be performed by a Board Certified Neurologist or other medical doctor who is specifically trained in dementia. Physician Assistants and Nurse Practitioners should not be considered as having specific expertise in diagnosing Alzheimer’s disease. This should be done by a medical doctor with such expertise.
If considered necessary the latest cutting edge imaging and laboratory tests should be ordered. These may include MRI scan of the head, MRI hippocampus volume averaging, PET scan, and cerebral spinal fluid evaluation for specific markers for Alzheimer’s disease. In Patients less than 65, PET scan or MRI Hippocampus averaging is recommended. A specialized memory test may identify those with mild cognitive impairment, a precursor to Alzheimer’s disease. Recent advances note the importance of diagnosing those with mild cognitive impairment, as 80% convert into Alzheimer’s disease in 4-6 years.
Early Alzheimer’s disease has responded well to the DEAR – TEAM intervention at the Fortanasce – Purino Neurology Center.
Part 2 – How do I decide if it is time for an extended care facility?
This is a painful decision for most. Unfortunately, the primary reason for the decision, according to the American Academy of Neurology, is the primary caregiver dies or becomes ill and there is no one able to take over the responsibility. Too often I have misguided devoted loved ones, not recognizing the clear signs that their loved one needs help they cannot supply because they are not trained nor have the misguided perception that they are abandoning their loved one if they should place them in an extended care facility. The results are often catastrophic ending in the injury to the one they love or they themselves become ill. Remember the physician caring for your loved one should have extensive experience with Alzheimer’s disease. Treatments and medications have changed. Proper Treatment requires personalized physician attention. Each person with Alzheimer’s disease is unique with their own symptom complex. Alzheimer’s disease progresses, therefore, these treatments must change as the disease changes. Those without expertise often fail to make these necessary alterations in treatment.
The basis to make decisions especially for a long term facility are:
- Safety issues
- Medical issues
- Behavioral issues
- Memory deterioration
- Caregiver burn out
Safety is often not considered. However, falls are a major cause for hospitalization to one with Alzheimer’s disease. This may be due to numerous problems; including knee or hip problems, or peripheral neuropathy that increases the likelihood of a person losing their balance. More commonly, one sees poor safety judgment and wandering behavior as the underlying cause for the fall. Going up and down stairs or even curbs, falling over rugs, or especially at night going to the bathroom. Major warning signs are signs of bruising or cuts, stumbling, or difficulty getting out of a chair. Serious warning signs are those of a fall and bruising and cuts.
The number one predictor of another fall is the first one according to American Academy of Neurology. If your loved one has had a fall and also has leg weakness, (i.e. difficulty getting out of a chair, or hip or knee disease, or has diabetes and leg numbness), they are at very high risk and need 24 hour care. If your loved one has fallen, has a bruise on the head, or lost consciousness, it is advised to see your doctor or go to the emergency room and considering getting a CT scan of the head to rule out a subdural hemorrhage. These subdural hemorrhages not uncommonly will progress slowly over weeks or even months and are misdiagnosed as a stroke.
Hip fractures and wrist fractures occur in more than 1.5 million people per year in the United States and are particularly high in those patients with Alzheimer’s disease. Therefore, falls and instability in gait, together with wandering behavior, are high risk factors and those with these risk factors may do better in an extended care facility where continuous care can be given.
An important sign and safety issue is belligerence and irrational anger in those with Alzheimer’s disease. This behavior is often preceded by hallucinations or paranoia, not infrequently seen during sundowning. Sundowning usually occurs in the afternoon. A person with Alzheimer’s disease can easily misidentify, even their own spouse, and strike out. They will often first start with suspicious and aggressive activity with strangers. Watch out for their believing others are stealing their clothes, taking their money. Many believe this behavior is limited to a person’s prior personality. In fact, it has little to do with one’s prior personality. Since a person cannot remember, has poor judgment and insight, it is easy to see why they might think someone is playing tricks on them. Subsequently they act out angrily. Unfortunately, they can harm the ones who love them the most. This is particularly a problem if the patient is a man.
Hallucinations, paranoia, followed by anger is a serious problem that needs medical attention. There are medications that can help. There are many medications that can complicate the medical picture causing paranoia and hallucinations. An example is some of the anti-Parkinsonian medications. Ask your doctor or pharmacist.
Specialized Extended care facilities are particularly apt at treating patients with behavioral issues.
Poor hygiene and incontinence can lead to serious health problems, as infections. Serious joint problems that make them unstable have been discussed. Multiple medications, especially someone on anti-coagulants as Coumadin, must be carefully watched and monitored. Ask your physician if he feels home nursing care is needed.
If poor nighttime sleep with wandering is a problem, sleep hygiene may help a lot. It is important your loved one be kept awake during the daytime. Make sure they wake up at the same time each morning and exposed to bright light. This will reset their sleep clock. Medications to sleep is best avoided unless it is needed to help with belligerent or hallucinatory behavior. These medications can increase the likelihood of falls. Make sure it is an expert in dementia who is ordering these medications. Make certain it is a doctor who has extensive experience in handling Alzheimer’s patients.
Alzheimer’s disease is not a static disease, it is always progressing. The symptoms are often unique from case to case and, so, one treatment does not fit all. This is the reason one needs a physician trained in Alzheimer’s disease and one who will follow your loved one carefully.
Memory problems progress from short-term memory problems with indifference to long-term memory difficulties. An example is misidentifying family members, forgetting their names, to hallucinations or illusions. Paranoia and aggression are just a normal reaction to the progressive loss of the brain’s frontal lobes and hippocampus functioning. As memory worsens automatic memory, that is the memory that allows us to know how to clean ourselves, dress ourselves, and even walk, deteriorates. Finally, even their ability to walk and talk will be markedly impaired.
Alzheimer’s disease is like no other illness. It is “a never ending goodbye” as Ronald Reagan’s wife, Nancy, says.
In summary, if your loved one is a danger to themselves due to falls, needs specialized medications, wanders that leads to their leaving their home, or medically due to incontinence and need for specialized medication, extended care facilities must be considered. If they are a danger to others due to aggression, aggressive behavior, hallucinations or paranoia, they are candidates for extended care facilities or 24/7 homecare. How do you know you are in danger?
Part 3 – What are the signs of caregiver burnout?
Burnout is not a sign of psychological weakness, it is a real physiological condition caused by chronic high cortisol levels and low executive hormones, such as serotonin and dopamine.
The caregiver may not be aware that they are in an emergency mode 24/7. Even in their sleep there is a third eye constantly open awakening them at any unusual noise or movement, like a parent who has a baby; therefore, the caregivers are on 24 hour alert 24, 7 days a week. The signs of burnout are intermittently having feelings of uneasiness with occasional feelings of dread. This progresses to overwhelming feelings, such as crying or sudden anger. The anger often leads to feelings of guilt. At this point, the caregiver needs help. Help that is readily available in support groups. Also help that allows them time to replenish their good hormones, their dopamine and serotonin, and have a vacation from their stress hormone cortisol. A physician specializing in dementia can:
- Provide healthcare agencies
- Direct you to Alzheimer’s Association in your area
- Provide healthcare assistance to help you with
- Sleep and stress management
- Medication, only if needed, to help with depression and sleep management
Further help can be gotten through the Anti-Alzheimer’s Prescription and DEAR Program.
Part 4 – What are the typical behavior and memory problems with Alzheimer’s?
This is the third part of the series on diagnosis, treatment, and prevention of Alzheimer’s.
Alzheimer’s disease is often divided into three stages and a precursor stage called mild cognitive impairment.
Mild Cognitive Impairment
If you have a loved one and are concerned about their memory or you notice that you are having memory problems, be tested immediately by an expert in Alzheimer’s disease. We have a VMS examination, which is very helpful in diagnosis mild cognitive impairment. Mild cognitive impairment is a brain disorder typified by short-term memory difficulties that are more than one would expect for that person’s age or education. Otherwise, people with mild cognitive impairment are independent in all activities of daily living and can live independently. Not infrequently family members may be relied upon for the diagnosis and not infrequently will make a statement of concern to the individual who has mild cognitive impairment. Frequently it is not the spouse or rather close friends, children, or siblings who will see the changes. Not infrequently spouses will have denial. Most physicians are note trained to diagnose mild cognitive impairment, so, if in doubt, see an expert neurologist or other physician particularly trained in dementia. Note the usual Mini Mental Status Examination is not reliable to make the diagnosis. Early diagnosis is important as 80% of people with mild cognitive impairment convert to Alzheimer’s disease in 3-5 years.
Early Alzheimer’s Disease
The passage from mild cognitive impairment to Alzheimer’s disease occurs when the person is not aware of their short-term memory difficulties and so cannot safely be independent, i.e. forgets to turn off the burners on the stove, can’t remember dates, asks the same question after it has been answered that day, tells the same story over and over as if it was the first time they had relayed it to you. They start to forget to pay bills, have poor hygiene, or begin unusual behavior as hording, getting food fetishes or forget meals, and begin to lose weight. Frequently they become loners and withdraw from social activities. At this time, they are apt to show poor insight and judgment and often make poor financial and medical decisions. At least once a month I come across a person who has lost their entire retirement by being taken advantage by so called new friends or new important others who are opportunists.
This occurs when short-term memory loss becomes common place. Behavior begins to deteriorate. They become paranoid, quick to anger, denying that they are forgetting, or begin to make serious judgment errors financially. At this time they are particularly dangerous driving. Even at early Alzheimer’s disease driving should be curtailed or stopped. Make sure you notify your doctor. If you are concerned about their driving ,do not wait till an injury occurs ,notify your doctor.
Severe Alzheimer’s Disease
This is often associated with severe language and activities of daily living problems; including dressing, hygiene, and even ambulating or walking.
What may not be Alzheimer’s disease?
Remember, if someone has a very sudden progressive loss or sudden change in memory, behavior and activities of daily living, this may not be Alzheimer’s disease.
Onset in those less than 70 or especially in their 50-60s. Sudden onset and fast progression over weeks or months. Associated with hemiparesis or other signs of a stroke. A history of prior thyroid disease, infections, HIV, or Lyme’s disease. Most important are recent falls or head injury that may indicate the patient has a subdural hemorrhage, a very treatable cause of dementia. A history of progressive headaches or visual problems may indicate a subdural hemorrhage, once again, from a fall or even a tumor, especially of the patient has had a history of cancer, such as melanoma, lung, or stomach cancer.
Do not wait, get an evaluation by your physician and ask for an expert opinion if the symptoms persist or worsen.