Understanding and Dealing with Alzheimer’s Disease

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.

Causes of Alzheimer’s Disease  

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.

Early Onset Alzheimer’s vs Late Onset Alzheimer’s

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:

Age

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. 

• 3.2% increase between 65-74 years old
• 16.3% increase between  75-84 years old
• 52.1% increase at 85 or older. 

Sex

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.

Downs’ Syndrome

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.

Past head Injuries

People who’ve had a severe head trauma have a greater risk of Alzheimer’s.

Poor sleep patterns

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.

Lifestyle and heart health

Research has shown that the same risk factors associated with heart disease may also increase the risk of Alzheimer’s disease.These include:

• Lack of exercise
• Obesity
• Smoking or exposure to secondhand smoke
• High blood pressure
• High cholesterol
• Poorly controlled type 2 diabetes

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.

Diagnosis of 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 vs  Dementia

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:

• A decline in memory
• Changes in thinking skills
• Poor judgment and reasoning skills
• Decreased focus and attention
• Changes in language and communication skills

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.  

Conditions That Mimic Alzheimer’s

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:

• Dehydration
• Malnutrition
• Improper use of medications
• Excessive alcohol use
• Emotional and physical traumas
• Acute infections
• Renal failure
• Relocation
• Depression (which can appear as Senility)

Symptoms of Alzheimer’s Disease

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)

• Short-term memory loss
• Difficulty concentrating
• Poor judgement
• Hesitancy over doing things that once came easily
• Occasional problems finding the right word or expression
• Some perceptible changes may occur in personality
• Often withdrawn
• Anxiety about not being able to remember as well
• Anxiety about what is happening to him/her
• Difficulty arriving at decisions

Symptoms – Stage 2 (2 -10 years after diagnosis)

• Repeating statements
• Real difficulty remembering names of friends and family
• Fear of getting into a bathtub
• Difficulty dressing
• Perceptual – motor problems
• Increased difficulty organizing thoughts
• Problems with reading, writing and working with numbers 
• Increased difficulty locating the right word
• Suspiciousness, sometimes irritability
• Hearing or seeing things that are not there 

Symptoms – Stage 3  (Terminal Phase)

• Does not recognize oneself in the mirror
• Unable to take care of oneself
• Difficulty swallowing
• Sleeps longer and more
• Bizarre or disturbing behaviors (constant crying, hitting, biting, screaming, grunting noises)
• Loss of control over bladder or bowels
• Abusive, angry, aggressive, demanding behaviors
• Bizarre sexual behaviors

Alzheimer’s Disease Treatment

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.

Alzheimer’s Disease Prevention

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. 

• The Mediterranean diet 
• Exercise in animal models has been shown to clear amyloid beta better than any pharmaceutical we have so far.
• Lifelong learning and social engagement
  • Studies have found an association between lifelong involvement in mentally and socially stimulating activities and a reduced risk of Alzheimer’s disease. Low education levels that are less than a high school education appear to be a risk factor for Alzheimer’s disease.

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.

Alzheimer’s Disease Management

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

• Help your care recipient cope with the early changes 
  • Provide reassurance that he/she will be cared for.
  • Keep him/her as involved as possible in family activities and decision making.
  • Do not talk about memory loss in front of the person with this diagnosis.
  • Keep up with former daily habits and living patterns.
  • Don’t be demanding about normal daily activities.

• Set up a care-plan for the future whether a diagnosis is confirmed or not.
  • Read everything you can find about the disease and it’s challenges. 
  • Hold a family conference and discuss how future care requirements can be divided up.
  • Identify the services and professionals that will be the “formal support system” before you need them.

• Arrange legal and financial affairs  
  • Organize documents  
  • Consult an Elder Care Lawyer  and Financial Advisor (initial consults are often free). Do this even if financial resources are limited.
  • Definitely set up Durable Power of Attorney, DNR.
  • PS..I cannot give legal advice 

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.

• Use Memory Aids – a large sign on the toilet door; laying out clothes in the right order; leaving old family photos around to see. People remember things in different ways so try everything.
• Restlessness and Wandering
  • Try to identify what makes him/her fidgety, pace around the house or want to leave.
• Repetitiveness
  • The person you are caring for will be anxious about being left alone and may follow you to feel reassured that you are close by. Constant questions or statements may be part of this behavior – and exhausting. 
  • Remember – this behavior is not deliberate. Try to distract him/ her with a snack, sitting down and talking about the past with a photo album. 
• Fear of Bathing
  • Many Alzheimer’s sufferers develop a fear of water and/or fear of getting undressed and into the bath.
  • Figure out what the fear is. Is he/she afraid of stepping down in the bath?  Use a bath seat or take a shower. Is he/she upset about getting undressed? Convince him to wrap a towel around himself while immersed in the water. It may make washing more difficult and is more work but can help.
• Hallucinations and Delusions
  • Remember- this person is not rational and will not understand your logic. He believes what he sees, smells or hears what no one else can. This is not easy for anyone to deal with, believe me. 
  • Night lights can help with hallucinations in the dark caused by shadows.
• Hoarding
  • This behavior can make caregivers extremely irritable (to put it mildly)
  • It sometimes helps to provide a special drawer or bag to satisfy the need to be busy and secretive.
  • Don’t forget to review the linked article 
• Suspiciousness and Accusations
  • It is not uncommon to be accused of theft or trying to poison the person for whom you are caring.
  • If this happens to you, explain to others that this person has a disease of the brain. When a 3rd party understands, their indignation usually resides.
• Not Remembering Who You Are
  • This hurts. Try to accept that the disease is causing this problem.
  • This is often the beginning of the grieving process because you are losing touch with this person that you have dearly loved. Meaningful communication is gone. 
  • This is a big enough topic for an entirely separate article. In the meantime, have a look at the attached link. 

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.

• Skin issues, infections, bowel and bladder incontinence 
• Angry aggressive behaviors
  • Remove photos of the person as they may confuse or distress.
  • Remove mirror as he/she may be startled by the image thinking it’s someone else.
  • Lock up all potentially dangerous tools (scissors, nail files, knives).
  • Keep telephone numbers handy and neighbors who can help you especially if there are signs you may be attacked.
  • Try not to react angrily EVER as this person doesn’t know what they are doing. Try every diversionary tactic. Ask the MD for medications that help with combative behavior.
• Share the care as much as possible with other family members
• Join an online or local caregivers support group if at all possible 

Alzheimer’s Disease – The Future 

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.  

The Author‘s Experience

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.