Alzheimer's Disease, unfortunately, is yet another disease with which I have first-hand experience. My husband's grandmother had it, and now his mother has it. My father developed dementia during the last several years of his long life, and it was probably Alzheimer's. A friend of ours in Australia has also, sadly, developed it as well.
It's an insidious disease because at first you don't realize the person is developing symptoms of Alzheimer's. Depending on what the first symptoms are, you may think they are just getting moody, or downright cantankerous. You might just think they are absent-minded. Or you may not notice a thing - because sometimes those in the early stages of the disease are great at "faking it" and acting as if nothing is wrong.
A friend gave me a book, Living in the Labyrinth, by Diana Mcgowin, the story of her own journey into Alzheimer's Disease. Diagnosed at an unusually young age (under 50), she retained her self-awareness and miraculously was able to write this book, which really helped me understand better what is going on inside my mother-in-law's head. I only wish I'd had it when my father first started developing symptoms. It's out of print now but you can buy it used on Amazon.com, along with other personal accounts of Alzheimer's Disease.
One of the first symptoms my father had was getting lost in familiar surroundings. This was one of Diana's first symptoms as well. In my father's case, we didn't realize the importance of the symptom, since he'd never had a great sense of direction to begin with, and he was, after all, 87 or so at the time.
One of the other early symptoms he showed was a sudden interest in winning the Publisher's Clearing House Prize. My father, who had never gambled in his life, became obsessed with winning this prize, and started ordering all kinds of things from Publisher's Clearing House, even though my mother and I told him that legally they have to give him the same chance to win even if he didn't order anything. He ordered a lot of other merchandise and books over the phone. Eventually the credit cards had to be taken away from him; it should have been done sooner.
Then the next thing that happened was he became hostile to my mother; started swearing at her and mocking her accomplishments. My theory is that he knew his own thinking processes were going downhill and was jealous of her continued mental sharpness. But treating my mother this way was very much out of character for him.
He also began having manic episodes, where he had grandiose ideas and talked nonstop, all his thoughts running together in a stream-of-consciousness river that would have made James Joyce proud.
As he deteriorated further, he became obsessive-compulsive, and started tearing things up. He would remove the covers of books, and then the first pages, and eventually tear up half the book. He would take the pieces and put them in his pocket. He had a lifelong love of books and I can only think that because he could no longer read them, this was his way of consuming them in another way.
Eventually he would sit for hours tearing any pieces of paper he could find into tiny pieces. I think he felt it was his job. My father always had to have a job; he didn't retire until he was 68 and then even in retirement he got a job proofreading, which he held until he was 88 and started being affected by the dementia.
He began getting up in the middle of the night, thinking it was morning and time to get up. Unfortunately this led to his ultimate decline. One night he got up in the dark and fell down the stairs and broke his leg. He had to go into a nursing home since my mother couldn't care for him with a broken leg. In the nursing home he gradually declined over the next year until he seldom spoke, then had problems eating and swallowing, and finally stopped eating altogether.
We chose not to have a feeding tube inserted, as I learned through research that it did not extend patients' lives, often caused complications, and after all, what would be the point anyway? He passed away peacefully at age 92 on January 20, 2005. One of the last things he still did was to play the piano, a lifelong hobby of his; he could still pick out a tune with one finger up until the last couple of months.
Naturally I am somewhat concerned that I might develop Alzheimer's Disease, but since my father didn't get it until very old age, I am not that worried about it, especially since my mother is now 88 and is mentally as good as ever.
I'm a little more concerned about my husband, since both his mother and grandmother have been affected, and at younger ages (his mother started showing symptoms in her early 70's). I hope by the time it may be his turn, that they will have discovered a cure, or at least something that will halt the disease in its tracks.
You too may be concerned about developing Alzheimer's Disease - and so you should, as it is estimated as many as half of people who live to be older than 85 will have it. Therefore, I have done all the research on it below so that you don't have to. And I hope you never need to.
What is Alzheimer's Disease?
Alzheimer’s Disease is the most common kind of dementia, a word that describes a number of conditions that all gradually destroy brain cells and lead to progressive decline in mental function. Alzheimer's Disease is named after Dr. Alois Alzheimer, a German doctor, who was the first to identify the condition, in 1906. He found abnormal clumps and tangles of fibers in the brain of a woman who had died of an unusual disease. The clumps are now called amyloid plaques and the tangles are called neurofibrillary tangles.
These plaques and tangles are considered the definitive signs of Alzheimer's disease. Although they can't be seen except on autopsy, other changes wrought in the brain as a result of these deposits in the brain can be identified through an MRI (Magnetic Resonance Imaging).
Alzheimer's disease is an irreversible, progressive condition, where brain cells deteriorate, causing loss of cognitive functions such as memory, judgment and reasoning. Because the plaques and tangles affect various parts of the brain, movement, coordination, and pattern recognition can also be affected.
The condition mainly affects the parts of the brain called the cerebral cortex and hippocampus, which lose mass and shrink as the disease worsens. This shrinkage can be seen in an MRI.
In addition to plaques and tangles in the brain, Alzheimer's patients also have greatly reduced amounts of acetylcholine. Acetylcholine acts as a transmitter between brain cells in the cerebral cortex and is needed for cognitive function.
A protein called beta amyloid makes up the center of the plaques found in Alzheimer's patients' brains. Surrounding this protein are fragments of deteriorating neurons (brain cells), especially those that produce acetylcholine.
The neurofibrillary tangles are pieces of a protein called tau, which is normally found inside brain cells and maintains proper cell structure and function. An abnormality in the tau protein disrupts normal cell activity.
Right now scientists are hard at work trying to identify the causes of Alzheimer's Disease in genetically susceptible people. Previous theories regarding the culpability of aluminum (in pots and pans or antiperspirants), flu shots and aspartame have been generally discounted as no definitive links have been found with these possible causes. In fact, being up to date on vaccinations and getting flu shots seems to be correlated with a decreased propensity to develop Alzheimer's.
There are other types of dementia besides Alzheimer's. A common one is called vascular dementia, caused by reduced blood flow to the brain from mini strokes. If this occurs along with Alzheimer's, the condition is known as "mixed dementia."
Parkinson's Disease and Creutzfeldt-Jakob Disease are two other neurological diseases that exhibit dementia as one of their symptoms.
There are also other types of primary dementia such as Dementia with Lewy Bodies, which comes on more quickly and has a swifter course than Alzheimer's Disease; and Pick's Disease, which generally affects people at a younger age.
This article will focus only on Alzheimer's Disease; however, please keep in mind that any symptoms of dementia must be investigated thoroughly to make sure you know which type you are dealing with.
There are also two patterns of Alzheimer's Disease: the kind that develops at an older age, and "early onset." Early onset Alzheimer's Disease is defined as Alzheimer's that begins before age 65. It can start as early as the 30's or 40's but this is very rare; usually early onset Alzheimer's Disease is diagnosed when the patient is in his or her 50's. This type of Alzheimer's Disease is more apt to have a strong genetic component and to run in families.
What are the symptoms?
Symptoms of Alzheimer's disease include the following:
- Short-term memory loss
- Inability to perform ordinary physical tasks such as dressing or eating, caused by a disorder of movement - apraxia.
- Problems with getting meaning out of one or more of their senses (called agnosia)
- Aphasia (loss of ability in comprehension of spoken or written language; tendency to use the wrong word)
- Delusions (an example is thinking someone close to them is stealing things from them)
- Person becomes easily lost and confused
- Inability to learn new mental tasks - or, for that matter, to understand tasks that were previously easy for the person to perform
- Loss of judgment, reason, and cognitive abilities
- Loss of inhibitions
- Belligerence (which my father developed)
- Social withdrawal (someone previously gregarious, like my mother-in-law, gradually stops talking much in social situations; becomes anxious and confused in large gatherings)
- Visual hallucinations (my father sometimes saw people who weren't there; "Isn't that odd, I thought I saw your aunt standing in the driveway," he said to me once. Later on in his decline he thought there was a tiger sitting on the bed in his nursing home room)
It is common for patients with Alzheimer's Disease to be worse the later in the day it gets. "Sundowning" is the term used to describe the increased confusion and agitation that often occurs later in the day and often into the night.
In end-stage Alzheimer's disease, patients may become bedridden and need help with eating and getting out of bed to use the bathroom. Often they are incontinent and need to wear diapers as my father did. Some have convulsions.
Depression is common in patients with Alzheimer's Disease, especially during the earlier stages when they may be aware of losing mental functions. My father had a history of depression throughout his life, so he was already on anti-depressants when his mental faculties began to decline.
According to the Alzheimer's Association website, there are a number of stages of Alzheimer's Disease:
Stage 1: No impairment (normal function) These people experience no memory problems and none are evident to a health care professional during a medical interview.
Stage 2: Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease) The person may feel as if they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.
Stage 3: Mild cognitive decline. Early-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms. Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include:
- Word- or name-finding problems
- Decreased ability to remember names when introduced to new people
- Performance issues in social or work settings noticeable to family, friends or co-workers
- Reading a passage and retaining little material
- Losing or misplacing valuable objects
- Decline in ability to plan or organize
Stage 4: Moderate cognitive decline (Mild or early-stage Alzheimer's disease). At this stage, a careful medical interview detects clear-cut deficiencies in the following areas:
- Decreased knowledge of recent occasions or current events
- Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s
- Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances
- Reduced memory of personal history
- The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations
Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease).
Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:
- Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated
- Become confused about where they are or about the date, day of the week or season
- Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s
- Need help choosing proper clothing for the season or the occasion
- Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children
- Usually require no assistance with eating or using the toilet
Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease).
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
- Lose most awareness of recent experiences and events as well as of their surroundings
- Recollect their personal history imperfectly, although they generally recall their own name
- Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
- Need help getting dressed properly; may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
- Experience disruption of their normal sleep/waking cycle
- Need help with handling details of going to the bathroom (flushing toilet, wiping and disposing of tissue properly)
- Have increasing episodes of incontinence
- Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions; hallucinations; or compulsive, repetitive behaviors such as hand-wringing or tissue shredding (as my father did)
- Tend to wander and become lost
Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease) This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered. They need help with eating and going to the bathroom, and there is general incontinence of urine; they lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired. One of the things my father did was continue to eat and put more food into his mouth and to chew, but not swallow. Eventually he would have to spit out the food and start over.
Of course, not everyone who becomes forgetful is on the road to Alzheimer's. The saying is, if you lose your keys, don't worry; if you find them and can't remember what they're for, then you have a problem. I think this is true of many aspects of the disease; if you forget the details of a project, it means you're middle-aged and forgetful; if you forget you ever HAD the project in the first place, even after you're reminded, that's a bigger concern. But if you are truly worried, you should visit a neurologist and be evaluated.
How is it diagnosed?
You may ask, if Alzheimer's is so awful, why would anyone want to find out they have it any earlier than they have to? The answer is that early detection will give the person and his or her family the time to understand what to expect, get access to medications that can slow the progression of the disease or participate in a clinical trial; avail themselves of services that are provided to Alzheimer's patients; build a network of doctors and caregivers to depend on as the disease progresses; and plan for future needs.
No one type of doctor is needed to diagnosis Alzheimer's Disease. If you're concerned about yourself or a loved one, first consult the primary care physician and have a checkup. He or she can then send you to an appropriate physician who will do the evaluation. Often it is a neurologist or a psychiatrist, depending on the symptoms the person is experiencing.
There is no definitive test for Alzheimer's Disease. First, other conditions and diseases that can cause similar symptoms must be ruled out, so a full physical is in order. Medications should be evaluated to make sure they are not the cause of any symptoms, and other factors such as alcohol use and poor nutrition must be investigated.
Then the person's cognitive functions must be evaluated. The doctor will ask the history of the symptoms causing concern, and will conduct a cognitive test such as the mini-mental state exam or MMSE. In this test, the patient is asked a series of questions designed to test a range of everyday mental skills, such as:
- Remember and repeat a few minutes later the names of three common objects
- State the year, season, day of the week and date
- Count backward from 100 by 7s or spell “world” backwards
- Name two familiar objects present in the office as the examiner points to them
- Identify the location of the examiner’s office (state, city, street address, floor)
- Copy a picture of two interlocking shapes
- Follow a three-part instruction, such as: take a piece of paper in your right hand, fold it in half, and place it on the floor.
The maximum MMSE score is 30 points, and the various point levels denote mild, moderate and severe dementia.
Another mental status test is the “mini-cog,” which involves two tasks: (1) remembering and a few minutes later repeating the names of three common objects, and (2) drawing a face of a clock showing all 12 numbers in the right places and a time specified by the examiner.
The neurologist that examined my father used a combination of these tests; my father did have to draw the clock and answer the various questions above. He also was asked who the president was (I was sad to realize my father didn't remember the name of the president, even though he'd always been politically involved). Last, he was asked to write a sentence. He wrote "Life is a long struggle."
The neurologist will also check reflexes, coordination, muscle tone, eye movement, and other functions that may be affected by Alzheimer's.
An MRI or a CT scan may also be done to rule out brain tumors or other causes of mental decline, as well as to assess the volume and shape of the brain structure. As Alzheimer's progresses, the brain shrinks. Functional imaging such as PET scans or functional MRIs are also used to assess brain activity.
Another area of research focuses on developing tracer compounds that will attach to key abnormal brain deposits. Preliminary data suggests that one such tracer may attach to beta-amyloid and “light up” in a PET scan.
My father had a CT scan but couldn't have an MRI because he had a pacemaker, which could be affected by the magnet in the MRI.
A good doctor will also evaluate the patient in terms of mental state, and treat them as appropriate for depression and other symptoms that may overlap with dementia.
Recent research has indicated that changes in the lens of the eye that are detectable by a brief, non-invasive laser pulse might reliably indicate the earliest stages of beta-amyloid buildup. This is still experimental.
Once the patient is diagnosed, the patient and family should learn all they can about what to expect, what resources are available to help both the patient and caregivers, and what to expect financially. There are eldercare attorneys available to counsel patients and their families on how to manage the difficulties of insurance coverage, Medicare, Medicaid, and how best to plan for the later stages of the disease.
There are also support groups for both patients and caregivers. It is important to seek these resources out and take advantage of them; many caregivers burn out or don't realize some of the symptoms the patient is showing are signs of the disease and not something they should take personally. Talking to others in the same boat can help family members and others involved with the patient deal with the situation. Similarly, the patient will feel better knowing he or she is not alone.
Patients may survive 8 to 10 years with Alzheimer's disease. Some have been known to live 25 years with the disease. Death usually occurs due to secondary infections, heart disease, or malnutrition. The late President Ronald Reagan, who was diagnosed with Alzheimer's Disease not long after he left office, lived many years after that and did not die until he was well into his 90's.
How is it treated?
Although there is no cure of Alzheimer's Disease, there are many medications available to slow the progression of the cognitive decline, and to treat specific symptoms.
For slowing the decline in mental function, there are a number of cholinesterase inhibitors, which act on the enzyme that breaks down acetylcholine, the neurotransmitter that is scarce in Alzheimer's patients. These drugs include:
- Donepezil (Aricept)
- Rivastigmine (Exelon)
- Galantamine (originally called Reminyl and now called Razadyne).
My father was on all three of these medications at various times.
The original cholinesterase inhibitor was Tacrine (Cognex), but it is seldom prescribed now as it tended to cause liver damage.
Another type of medication that was introduced in 2003 is Memantine (called Namenda). This drug is a new type of drug for Alzheimer's which works by regulating glutamate in the brain. Glutamate is a chemical that regulates the flow of calcium into nerve cells; too much of it can cause cell damage or death.
My mother-in-law is on both Aricept and Namenda, and the combination seems to help her.
Other drugs often prescribed for Alzheimer's patients include drugs to treat the symptoms of the disease, such as anxiety, violent behavior, and depression. These drugs include:
Antidepressant medications for depression and irritability
- Citalopram (Celexa)
- Fluoxetine (Prozac)
- Paroxetine (Paxil)
- Sertraline (Zoloft)
- Trazodone (Desyrel)
(My father was on Desyrel and Celexa).
Anti-anxiety drugs for anxiety, restlessness, verbally disruptive behavior and resistance, such as:
- Lorazepam (Ativan)
- Oxazepam (Serax)
Antipsychotic medications for hallucinations, delusions, aggression, hostility and uncooperativeness. These include:
- Aripiprazole (Abilify)
- Olanzapine (Zyprexa)
- Quetiapine (Seroquel)
- Risperidone (Risperdal)
- Ziprasidone (Geodon)
- Drugs such as haloperidol (Haldol)
My father was on both Seroquel and Risperdal at different times.
Use of an antipsychotic drug needs to be done with care, as studies have shown that they may lead to an increased risk of death in older adults with dementia.
Prescription sleeping pills are usually not prescribed for these patients as they can increase difficulties with balance and incontinence. However, antianxiety medications or Desyrel can sometimes help a patient sleep. Over-the-counter sleep aids should be avoided as their main ingredients can worsen cognitive symptoms.
There are also ways to help Alzheimer's patients deal better with their situations and avoid triggering a bad reaction. These include:
- Redirecting the person's attention, rather than arguing, disagreeing, or being confrontational
- Simplifying the environment
- Simplifying tasks and routines
- Making sure the person rests between stimulating events
- Labeling items to remind the person what they do
- Putting safety locks on doors and gates; put gates by stairs
- Put up extra smoke alarms and control access to the stove
- Use lighting to reduce confusion and restlessness at night
Naturally, if you have a gun in the house, get rid of it.
My mother-in-law reacts poorly to crowds and noise. She does much better in a more intimate, quiet environment, with just a few people she knows very well. Interestingly, this did not seem to be a problem for my father. He was also different from her in that he did not become that withdrawn or quiet until after he went into the nursing home; his manic symptoms made him talk more, rather than less, in his early stages.
Keeping the mind active is one way to stave off the disease for as long as possible.
Research is continuing on Alzheimer's Disease and new discoveries and treatments are happening constantly. A company called Neurochem has developed a drug, Tramiprosate, called Alzhemed, which seems to reduce the formation of the amyloid plaques that are seen in the disease and also protect cells from damage and death. The drug has just completed Phase III trials and results should be announced shortly.
Other therapies are still being investigated. Vitamin E is being researched as something that may help prevent Alzheimer's. Another possible candidate is folate, found in green leafy vegetables. Estrogen replacement therapy may help prevent Alzheimer's Disease if women take it before age 65; after 65 it appears to increase the risk.
Even marijuana is being considered for Alzheimer's prevention.
Scientists as Purdue University have designed a new molecule that may actually prevent the cascade of events that leads to the formation of the amyloid plaques in the brain of Alzheimer's patients. This exciting discovery could lead to a drug that could actually prevent Alzheimer's from progressing, not just mask the symptoms of the progression as most other drugs do.
You can keep up with the latest new discoveries by checking the following websites and signing up for their newsletters:
http://www.alzheimersnews.com/
http://www.seniorjournal.com/Alzheimers.htm
http://www.medicalnewstoday.com/sections/alzheimers/
http://www.alzheimersupport.com/
http://alznews.org/Library/InfoManage/Guide.asp?FolderID=53
Will you get it?
You have a good chance of it. About 4.5 million Americans have it now. It is estimated that by 2050 that number of people with Alzheimer's could be as high as 16 million. Approximately 10% of all people over the age of 65 and as many as 50% of those over the age of 85 are diagnosed with the condition.
Risk factors for Alzheimer's Disease include:
- Age: Alzheimer's Disease increases with each decade of life as an adult. At 65 to 70 years your risk is about 1.5%; At 70 to 74 years your risk is about 3.5%; At 75 to 79 years your risk is about 6.8%; Your risk of Alzheimer's nearly doubles every 5 years so by the age of 95 nearly one half will have Alzheimer's disease.
- Genetic Tendency: People with a family history of Alzheimer's have a higher risk, implying that a genetic factor is involved. A clear inherited pattern of AD exists in less than 10% of cases. Some involve a mutation of the gene for the protein APP, found on chromosome 21. It is known that a protein called Apolipoprotein E, of which we all have a copy of one of three types, affects the chances of getting Alzheimer’s disease. If you have two copies of the E4 version you have an increased risk of Alzheimer’s; the E2 version seems to give protection against it.
- Down's Syndrome: Nearly all people with Down's syndrome (trisomy 21) who live into their 40s develop the disease.
- Other genetic defects: Some cases involve a defect on chromosome 14. The gene for the protein Apo E, found on chromosome 19, is a risk factor that may be involved in modifying the age of onset.
- Untreated high blood pressure: High blood pressure is a risk factor for loss of mental function in older people. Treatment reduces the risk.
- Head injuries: People who have had head injuries are three times more apt to develop Alzheimer's Disease.
- Diabetes: Recent research indicates a connection between diabetes (particularly if it is poorly controlled) and Alzheimer's Disease.
Will you get it?
If you live long enough, you have a 50-50 chance overall, since almost half of those over 85 do get with the disease. Those with a family history are even more likely to get it, and at an earlier age.
To try to prevent Alzheimer's Disease, eat right, exercise, keep your mind active, make sure to keep your diabetes or high blood pressure under control, take a vitamin pill, and keep your fingers crossed.
Information for this article was obtained from links referenced above, and:
http://www.neurologychannel.com/alzheimers/index.shtml
http://alzheimers.about.com/cs/diagnosisissues/a/what_alzheimers.htm
http://www.alz.org/
