Alzheimer’s disease is an irreversible, progressive brain disease that destroys a person’s intellectual and cognitive abilities and robs them of their memories. As this disease progresses nerve cells in the brain (neurons) stop working, slowly lose connections to one another and eventually die. This causes memory failure, personality changes and an inability to carry out the simplest tasks.
It also destroys families in many different ways. I have a vivid memory of receiving the first of many panic stricken calls from my mother that my father had just been diagnosed with Alzheimer’s. Neither of them knew what this meant as the MD left the message on their voice recorder with his test results. My 85 yr old mother was inconsolable. I remember being unable to catch my breath because I had no idea what this meant at that time or what to do first. After his death several years later I spent 10 years gaining domain expertise in the field of geriatric social work. The truth is, I never really exhaled until after my mother passed away in 2018. Being a family caregiver is no walk in the park.
In 1906 Dr. Alois Alzheimer, a German Psychiatrist, had a 55 year old patient with memory loss and hallucinations. After her death he conducted an autopsy on her brain and found that her cerebral cortex was thinner than normal. He also discovered neurofibrillary tangles and senile plaque. This was the first time this type of condition was found in a younger person as it was previously only encountered in elderly people.
To this day, the pathological diagnosis of Alzheimer’s disease is still generally based on the same investigative methods used in 1906.
What we currently know is that with Alzheimer’s Disease, the damage most often starts in the region of the brain that controls memory, and this process begins up to 20 years before anyone notices the first symptoms.
As the disease progresses the thinking center of the brain shrinks and this limits the ability of the brain to function at an optimal level. The loss of neurons also spreads in a somewhat predictable pattern to other regions of the brain and the nerve cells are eventually affected in parts of the brain that enable a person to carry out basic bodily functions, such as walking and swallowing. By the late stage of the disease, the brain has shrunk significantly and individuals become bed-bound requiring around-the-clock care.
This is an awful disease and it is ultimately fatal. However, all is not hopeless. While there is currently no cure, it is possible to slow down the progression if medications are given in the early stages (see more on this below).
The good news is that we are moving forward as evidenced in this recent study on reversing cognitive decline.
No one knows exactly what starts the Alzheimer’s Disease process or why some normal changes associated with aging become so much more extreme and destructive in people with this disease.
For most people Alzheimer’s is caused by a combination of genetic, lifestyle and environmental factors that affect the brain over time
However, in “Early Onset Alzheimer’s” genetic testing by itself has been effective in detecting Alzheimer’s in people between 30-60 years of age. Most cases in younger people are caused by permanent gene mutations in one of the three genes inherited from a parent. When the disease occurs in someone of this age group it is almost always passed down through families. Approximately 5-10% of people with Alzheimer’s Disease fit into this category
Genetic testing unfortunately does not accurately diagnose “Late Onset Alzheimer’s” which affects people over 60 years of age. Scientists have identified a number of genes that could possibly increase someone’s risk. However, genetics cannot predict who will or will not develop this disease in later years.
We have to look at risk factors:
As we age, the likelihood of developing Alzheimer’s disease increases.
Above 65 a person’s risk of developing Alzheimer’s disease doubles about every five years. One study details the increase of getting Alzheimer’s Disease as one ages.
More women than men have late-onset Alzheimer’s disease. This may be partly due to the fact that women tend to live longer than men, but biological and lifestyle differences likely also play a role. Studies also suggest that the APOE ε4 variant is associated with a greater risk for late-onset Alzheimer’s disease in women than in men.
By the age of 40, most everyone with this condition has Alzheimer’s pathology in their brain. This is likely related to having three copies of chromosome 21 — and subsequently three copies of the gene for the protein that leads to the creation of beta-amyloid. Signs and symptoms of Alzheimer’s tend to appear 10 to 20 years earlier in people with Downs’ Syndrome than they do for the general population.
My own sister, Zelda, had Downs’ Syndrome and Alzheimer’s. She died at age 61.
People who’ve had a severe head trauma have a greater risk of Alzheimer’s.
Research has shown that poor sleep patterns, such as difficulty falling asleep or staying asleep, are associated with an increased risk of Alzheimer’s disease.
Research has shown that the same risk factors associated with heart disease may also increase the risk of Alzheimer’s disease.These include:
These factors can all be modified. Therefore, changing lifestyle habits can often alter your risk. Regular exercise and a healthy low-fat diet rich in fruits and vegetables are associated with a decreased risk of developing Alzheimer’s disease.
The most accurate Alzheimer’s diagnosis can only be made after death with an autopsy examining brain tissue looking at the number and concentration of tangles in the short-term memory center of the brain.
Of course, that is not exactly much help to those of us who are caregivers.
Over the last ten years, education and testing has improved. Although the only definitive way to prove Alzheimer’s is after death, there are other methods in use now that help to diagnose prior to death more accurately than even 10 years ago.
There is more than one way to diagnose Alzheimer’s
Several days before my father died that day’s NY Times crossword puzzle was found in his shirt pocket. It was partially filled out. After the funeral I phoned the Neurologist who originally diagnosed him with Alzheimer’s to let him know. He told me that he had made an error with my father’s diagnosis in 2008 and as a result no longer fully relies on pet scans when diagnosing.
I have always wondered why he waited to tell us. Yes, it makes me angry to think about this.
Currently, the most accurate early-stage diagnostic tests for Alzheimer’s are a spinal tap or amyloid PET Imaging. These tests are expensive, uncomfortable and not available everywhere. Fortunately, we are moving closer to being able to diagnose based on blood testing.
Alzheimer’s disease is the most well-known and common form of dementia but not everyone with dementia has Alzheimer’s disease. These terms are often used interchangeably, but they actually have very different meanings. Dementia is not a specific disease. It’s an overall term, sometimes referred to as an umbrella term, which describes a wide range of symptoms. These symptoms impact a person’s ability to perform everyday activities independently. Common symptoms include:
The diagnosis of Alzheimer’s is mostly given by Neurologists after a variety of tests that rule out other conditions that may cause memory loss. Alzheimer’s disease is the most well known and common form of dementia but it is not the only one.
Below is a partial list of conditions that may cause temporary delirium which is reversible once the cause is identified and treated. Very often family members think that this is Alzheimer’s and they are wrong. Confusion, disorientation and severe forgetfulness can arise from a variety of causes including:
The course of this disease is unpredictable and there are a variety of symptoms. Not all people have the same symptoms at the same time. What can be especially distressing for families is that the sufferer looks perfectly normal while behaving a bit abnormally.
In our 40’s-60’s we may attribute moments of memory loss and confusion to stress, menopause or not getting enough sleep. As a result, we can easily miss seeing the beginnings of this disease. This often leads individuals and family members to deny that anything is happening. It is common to assume that forgetting is a normal part of aging and as a result miss the beginning of Alzheimer’s altogether.
The symptoms listed below often overlap or show up at different stages in the disease progression. It’s not the same for everyone and not everyone with these symptoms absolutely has Alzheimer’s (but they do have something – so do not put off getting thoroughly tested). An evaluation is essential by the right type of MD.
Symptoms – Stage 1 (2-4 years)
Symptoms – Stage 2 (2 -10 years after diagnosis)
Symptoms – Stage 3 (Terminal Phase)
Currently, there is no treatment – all we can do is manage the symptoms and
Neurologists are knowledgeable about the latest medications available. There are several that when taken in the earlier stages are sometimes helpful by slowing down the disease progression. This can be especially valuable for those diagnosed during older age as it can slow down progression into the terminal stage. This might mean that an individual passes away from other reasons unrelated to Alzheimer’s. The Alzheimer’s medication can in some cases delay the disease from progressing so that death may be caused by some other reason (such as an ongoing chronic disease) prior to reaching that terminal stage of Alzheimer’s. It is not great but it is an option worth considering.
What’s good for your heart is also good for your brain because the risk factors for Alzheimer’s and heart disease are similar. High cholesterol drives the production of amyloid beta. The overproduction or accumulation of amyloid beta plaque is what also leads to all of the problems that cause Alzheimer’s.
Does this mean that a CEO of a company without any degrees has a greater risk of Alzheimer’s than a CEO with a college degree? I doubt it.
It is normal to feel hopeless and helpless when confronted with this diagnosis. You may even feel anger. Most family members who are caregivers experience denial just not wanting to accept what is happening. Information on what symptoms occur when and how to cope as this disease progresses can be very helpful.
It is important to understand what demands disease progression may make on the time and energy of all involved in the care of this person. However, with that said, nothing is black and white with this disease. Sometimes you just have to wing it.
Managing Problems and Needs – Stage 1
Managing Problems and Needs – Stage 2
Often this is the long, demanding and exhausting stage for caregivers due to problem behaviors that arise that are totally alien to one’s experiences with the person who needs the care. Be sure to click on the links for more useful information.
Managing Problems and Needs – Stage 3
By this point, it is not uncommon for caregivers to feel helpless. It helps a lot to involve professionals at this stage and they can advise and guide care as well as implementing appropriate services (especially if caregiver safety is an issue). This phase can be so overwhelming that nursing home care may be the only realistic option. This is the terminal phase.
Many opportunities exist to participate in Alzheimer’s research and although it’s moving slowly – it is moving in a direction that will one day offer a cure.
This is a great article that describes a bit about what the future holds.
“There has never been a better time for moving into Alzheimers research”.
As listed in the introduction, the most recent information on reversing cognitive decline is very encouraging.
I recall that day when my 85-year-old mother called to tell me that my father was diagnosed with Alzheimer’s. He had applied for long- term care insurance and was denied as a result of the Radiologist’s report from a brain x-ray (PET scan) required by the insurance company. Everyone who knew him was shocked.
My parents lived 3000 miles away in Florida. We spoke weekly for years. I visited regularly and never noticed any evidence of this disease. Beyond misplacing keys or a wallet and forgetting names and hating his hearing aids he was just the same wonderful Dad. There were no other symptoms. Emotionally devastated by this diagnosis (later proven to be false) I watched both parents sink into a black depression that lasted until his death 2 years later. The death certificate listed renal failure as the cause.
Apart from visiting often and calling myself a long distance caregiver, like most suddenly thrown into this role, I had no idea what to do first or how to help. At the time of this diagnosis I had a Masters in Social Work but no specific training in geriatric healthcare.
After he passed away in 2010 I became a caregiver all over again to my mother who was diagnosed with Vascular Dementia. Unlike my father’s, her diagnosis was correct.
The past ten years have been spent working on the front lines at every step of the care continuum for older adults gaining domain expertise in this field of work. My experience included Home Health Care, Acute Care, Residential Care, Memory Care, Hospice and Palliative Care. I attained advanced certifications in Gerontology, Medical Social Work and Care Management. I also worked as a privately hired Geriatric Care Manager managing care for other long distance children whose parents reside in the SF Bay Area. Somehow, I managed to do this while managing the care for my mother who relocated across the country to spend her final years in a nearby memory care residence in Sunnyvale, CA. The personal toll was great as it is for most adult children who are caregivers – at least there are no regrets.
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