Alzheimer’s Disease: The Mystery Remains

“I have lost myself.” – Auguste Deter, 1901, at 51 years of age.

Dr. Alois Alzheimer, just over 100 years ago in 1906, identified what would become known as Alzheimer’s Disease after he performed an autopsy on the brain of this 56 year-old woman.  As a psychiatrist, he publicly reported the disease he identified that had caused her, in her words during the early stages of progression, to feel that she had lost herself.   The disease would progress in Auguste to a point where she no longer knew she was losing herself.  In this autopsy, he found that distinctive markings around the neurons, but most notably, her brain had shrunk in size.

Alzheimer was not the first to notice symptoms; they had been reported for many centuries.  Even the ancient Greeks and Roman philosophers and physicians associated old age with the symptoms of dementia.  Alois Alzheimer was the first to formally identify and report them to the medical community.

Alzheimer’s is an illness that nearly everyone has heard of.  Nearly everyone has known or knows of someone who has or has had Alzheimer’s, and if the current trends of incidence continue, there will be a substantial increase of the number of people diagnosed with Alzheimer’s.  Sadly, it will become even more familiar.

Alzheimer’s is one form of dementia, but accounts for 60-70% of identified cases.   There are many types of dementia identified, including dementia resulting from drug abuse, alcoholism,  head injuries— including the type identified in professional football players or boxers due to repeated blows—as well as other physical illnesses that can affect the brain, such as multiple strokes or Parkinson’s Disease.  Some research has suggested that a long history of depression or having lived with mental trauma can facilitate Alzheimer’s symptoms.   While the causes for dementia may vary and cannot reliably be identified, Alzheimer’s is typically the diagnosis given when all other potential causes can be ruled out.

In 2014, it was estimated that 5.3 million Americans were diagnosed with Alzheimer’s, at a cost for care of $214 billion, much of it being billed to Medicare, Medicaid and private insurances.  The Alzheimer’s association projects that figure to reach $1.1 trillion by 2050 if the current trends continue.   As our national population increases with Baby Boomer’s aging, all illnesses including Alzheimer’s will likely increase in incidence and prevalence.  There is no cure for Alzheimer’s Disease, and no known preventive measures that significantly reduce risk.  In only 1-5% of cases have genetic differences been identified, although research into this aspect is ongoing.    Its causes remain largely a mystery.

There is no certain prevention for Alzheimer’s Disease.  Global studies have been underway for years, with no consistent results to report.  Epidemiological studies have proposed relationships between certain factors such as diet, heart health, prescription drug intake, level of exercise and level of intellectual activity.  Only further clinical trials and studies will reveal whether these factors can help to prevent Alzheimer’s.

Professionals frequently advise, without disagreement or question, to keep the brain engaged and involved in challenging cognitive activities such as crossword puzzles, reading, playing board games, playing a musical instrument and maintaining strong social ties in order to minimize risk of developing Alzheimer’s Disease.

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Alzheimer’s Disease is divided into four stages.  While there is overlap between each stage, there is a progressive pattern of cognitive and functional decline noted.  There is no “typical” length of time for each stage; many factors play into each individual case, thus making it nearly impossible to predict with any certainty how long each stage will last.  The average life expectancy following diagnosis is six years, but some can live more than fourteen years.

Six percent of people over 65 are affected, and it most often begins after age 65.  However, 4-5% of cases develop before age 65.    In 2010, 486,000 deaths were recorded as being caused by dementia.  In itself, the disease does not typically cause death.  It does allow in other opportunistic conditions such pneumonia that typically cause death.    In the most severe cases at the end of stage four, the patient can no longer eat or drink, and thus, cannot survive.

 

Stage One:  Pre-dementia

This stage is easily confused with normal aging, and typically is only confirmed in retrospect when the symptoms increase in severity.  With normal aging, short-term memory loss and absent-mindedness is common, though it remains mild.  This stage is also termed “mild cognitive impairment.”  The symptoms include:

  • short-term memory loss
  • apathy and depression
  • irritability and reduced awareness of subtle memory deficits
  • abstract thinking impairments
  • decreased understanding of conceptual relationships

 

Stage Two:  Early Dementia

  • increased memory deficits are the most noticeable symptom
  • long-term memory suffers less than short-term, although it’s compromised
  • shrinking vocabulary
  • decreased awareness of deficits
  • may require assistance with cognitively demanding tasks, such as paying bills or following a simple recipe

 

Stage Three:  Moderate

  •  progressive deterioration hinders independence
  • basic tasks such as brushing teeth become hard
  • vocabulary difficulties including word substitution or “inventing” words
  • unable to carry on a coherent conversation with appropriate turn-taking and following sequence of discussion
  • risk of falling increases
  • may not recognize close relatives
  • wandering aimlessly
  • irritability and mood swings, including crying and aggression
  • ”Sundowning” may occur, which is a deterioration of mood in the late afternoon/ early evening hours
  • urinary incontinence may develop

 

Stage Four:  Advanced

  • complete dependence upon caregivers
  • simple phrases or single words used; eventually becomes non-verbal
  • may understand and reciprocate emotional communication
  • extreme apathy and exhaustion with occasional aggression
  • unable to feed themselves, eventually unable to swallow or may not appear to remember how to swallow.
  • frequent difficulty swallowing which can lead to aspiration pneumonia
  • pressure ulcers from being bed-bound

There are many medical and ethical decisions to be made regarding the caregiving aspect of Alzheimer’s Disease.  Most family members want to keep their loved on at home as long as possible in order to keep them comfortable in the most familiar environment.

This familiarity is important as the disease progresses.  Daily routines are crucial in order for the person with Alzheimer’s to remain as calm as possible.  These routines are their markers for predicting what will happen next, and what their next actions should be.  If the daily car ride through town after lunch is missed, the affected person may become frustrated and out of sorts, as they can no longer predict what their next step should be.  They may become angry and show aggression, or may demonstrate symptoms of anxiety.

Caregiving in the home is ideal for the patient of course, but can exact a heavy toll on the spouse or other family member who is the primary caregiver.   If the spouse is the primary caregiver, and other family members—including children—visit, they may not realize the extent of caregiving that is necessary, and this can cause isolation and frustration for the caregiver.  “Care for the caregiver” cannot be stressed enough.

Placing the person with Alzheimer’s into a care facility is a difficult and painful decision.  Their home routine is gone, and a new one must be learned.  Increasingly, more facilities are catering to the needs of the Alzheimer’s patient, with locked units that prevent wandering, a dedicated and highly trained staff who work only with the Alzheimer’s patients, and a strict daily routine to create familiarity and comfort for them.

No option is easy, as any caregiver or Alzheimer’s loved one can attest to.

Medically, there are no treatments that can reverse the symptoms, but some drugs can lessen the symptoms and delay the progression for periods of time.  However, some Alzheimer’s patients appear to develop a “tolerance” for these medications, and they don’t work as well as time goes on.

Physical, occupational and speech therapy may help to show the caregivers the best way to assist the patient with ambulation, activities of daily living such as getting dressed and grooming, and speech therapy may help to devise simple picture/word cards or books to aid with communication.  Diet recommendations and swallow strategies can be provided by speech therapy as well with a swallow evaluation.

Many people with Alzheimer’s lose their appetite, and nutrition and hydration become of paramount importance.  As the disease progresses and swallowing becomes difficult, diet changes may be necessary to minimize risk for choking and aspiration.  Softer foods and thicker liquids are the safest choices for most patients.  In the advanced stages when swallowing is no longer possible, the option to implement an artificial feeding method is one of the most difficult decisions to make.  Inserting a feeding tube directly into the stomach provides necessary hydration and nutrition, but it does prolong life as well as the progression of the disease.  Decisions about this option are best discussed and made in the earliest stages of the disease while understanding is still there.  Ideally, every person should discuss this in good health with their families and put it in writing in the form of a living will, not just for the possibility of Alzheimer’s, but for any illness or disability that may involve artificial means of sustaining life.

There is, at this point, no bright light at the end of the tunnel in Alzheimer’s research.  No sure thing, no high hopes for sustained relief of symptoms or a cure is within reach.  The research continues, and dedicated medical professionals and scientists continue to devote their livelihood to finding a cure, or to delaying onset and decreasing symptoms.   It is at the forefront of medical research efforts in many aspects.

As a society, we cannot give up hope.  Research will continue to offer insights as to causes in order to increase preventive measures, and new strides will surely be made to increase awareness of lifestyle factors that may diminish the risk somewhat.  Good health overall is a goal that can only help to decrease risk and delay the progression.

Caregivers have a unique and challenging role in the maintenance of life for persons with Alzheimer’s.   This typically poses a significant stress for the caregiver, and he or she should not be afraid to ask for help, ask for a break, or to consider other alternatives such as facility placement when their own physical and mental health is adversely affected.

There are caregiver support groups that can offer invaluable information, support, validation and companionship for the person who takes care of the Alzheimer’s patient.  Contact the Alzheimer’s Association at alz.org to find a local group or to join an online group, which can also be very helpful.

Until then, we can take comfort in knowing that all medical researchers involved are dedicated to finding a cure.  For those of us who are fortunate enough to choose, we can increase our overall health by proper diet, exercise and stress reduction, which can only help with decreasing our chances of succumbing to any illness.  Non-caregiving family members need to fully realize the hard work that is involved in caring for a person with Alzheimer’s.  Caregivers need to reach out to others in their situation to realize they are not alone, either through formal support groups, or finding others who are struggling as a caregiver.   As a population, a greater understanding of what the disease involves, as well as understanding the burden on the caregiver will foster a greater sense of hope.