Living with Alzheimer’s – a Progressive Neurodegenerative Disorder

Worldwide, forty-eight million people have been diagnosed with Alzheimer's, a chronic neurodegenerative disease, resulting in 1.9 million deaths just in the year 2015. (Khyade, Khyade, & Jagtap, 2016) There are medications that reduce symptoms for some patients, but these medications only work for a short-term period of time, at which point the patient reverts to the cognitive level they would currently be at had they never taken the medication and there are no medications that reduce the risk of getting the disease. There is no cure for Alzheimer's. Ultimately, everyone with the disease requires round the clock care at some point, but there are limited options, which forces families into crisis as the disease progresses. It is for this reason that I chose to do my research project and job shadowing on the population of Alzheimer's patients in long-term skilled nursing care.

The term Alzheimer's disease originated in 1906, when psychiatrist and neurologist, Dr. Alois Alzheimer, met Auguste Deter, a fifty-one year old woman suffering from an unknown mental illness causing unusual behaviors and increasing short-term memory loss. Her condition became his obsession. Following her death, he performed a brain autopsy and discovered a shrunken cortex, clumps, now know as amyloid plaques, and tangles of fibers, now known as neurofibrillary tangles, in her brain tissue. These conditions were distinctive enough to diagnose a new form of dementia, which became known as Alzheimer's disease. During the next five years, eleven similar cases were reported in medical literature, interchangeably using the term pre-senile dementia, a subtype of senile dementia due to the age of the patients. (Khyade, Khyade, & Jagtap, 2016) Studies later concluded that pre-senile and senile dementia were the same, differentiating the diagnosis of Alzheimer's disease and recognizing that age did not play a part in the diagnosis. This early version of the disease is now called early on-set and affects patients under the age of sixty-five. Eventually, Alzheimer's disease became a blanket term to describe people of all ages exhibiting the same symptom patter, disease course and neuropathology.

Alzheimer's is one of the most expensive diseases in the United States. There are currently more than five million Americans with Alzheimer's disease, absorbing twenty percent of all Medicare costs. The annual cost of caring for Alzheimer's disease varies from $42,049 for institutionalized patients to $12,572 for patients living in the community, (Dharmarajan, 2009) not including the lost wages of a caregiver. On average, the cost of care is $330,000 in a patient's lifetime. As the baby boomers age, it is anticipated that the rate of diagnosed seniors will grow dramatically, causing a very large social problem and economic burden. There are some medications on the market that have shown symptomatic benefit, and ultimately, any reduction of behavioral disturbance and cognitive decline reduces the needs of a caregiver, showing and economic benefits, but research is still under-funded and limited.

Today, Alzheimer's is a primary topic of biomedical research. The cause and cure for the disease remains unknown. Because no sample from any given case study is the same, results have varied widely and made it difficult to come to a resolution. The Alzheimer's Disease Neuroimaging Initiative was collaborated in 2003 to share data across the world. This data includes brain imaging, clinical, cognitive and genetic data and is available for physicians and researchers to immediately access, strategically utilizing research funding by limiting duplication of studies.

Alzheimer's is normally diagnosed through the amalgamation person's medical history, narrative history from caregivers, and behavioral observation.

In general, the symptoms of Alzheimer's disease include progressive memory loss, increased difficulty concentrating, a steady decrease in problem-solving skills and judgment capability, confusion, hallucinations and delusions, altered sensations or perceptions, impaired recognition of everyday objects and familiar people, altered sleep patterns, motor system impairment, inability to maintain activities of daily living, agitation, anxiety, and depression. Ultimately, the dementia sufferer enters a complete vegetative state prior to death. (Martin, 2018)

No brain scan, blood test or physical test alone can definitely diagnose the disease. A neuropsychological test is administered to determine what areas of cognitive function are impaired and what areas remain intact. Because patients often underreport or go to great lengths to conceal symptoms, the diagnosis is typically made over a minimum of sixth months to confirm to the physician that the condition is progressive. A brain scan using computed tomography (CT scans) or magnetic resonance imaging (MRI) is typically performed to rule out conditions that may mimic Alzheimer's and they may also show loss of brain mass and atrophy of the hippocampus, which are telltale signs of the disease. Diagnosis is made by symptoms and it is only through autopsy that a definitive diagnosis is made. (Martin, 2018) Fortunately, diagnostic technology is continuously improving, making the tricky task of diagnosing the disease more feasible.

There are many factors that play a role in the maintenance of Alzheimer's, however, the life expectancy remains between three and nine years after diagnosis. Acetylcholinesterase inhibitors have shown effectiveness in temporarily slowing the progression of the disease. (Martone & Piotrowski, 2013) While they may temporarily slow symptoms, they become ineffective and the body rapidly displays symptoms that would have been shown had the patient never taken the medication. Because the brain may become inflamed, non-steroidal anti-inflammatory drugs may also improve symptoms. The treatment for Alzheimer's remains primarily palliative through exercise, diet, engaging activity, cognitive therapy and surrounding the patient with familiar items to reduce distress.

Different factors will determine which care options are pursued for a loved on with Alzheimer's disease. In the early stages of the disease, families often choose to provide home care through minimal safety adjustments so that their loved one can maintain as much independence as possible. When is becomes unsafe for the patient to be alone, home care can be supplemented with home health aides, companion services or adult day centers. Adult Day centers offer structured to socialize the patient and most also offer meals and transportation to relieve some of the care burden. Assisted living is a good fit for those that need assistance with daily living activities, socialization and minimal medical management. Caregiver guilt and crisis play a key role in making the change to a higher level of care. Who would you call when your loved one elopes from home while you are at work? For many, the answer is 9-1-1, but the fact is that they cannot hold your loved one in the hospital simply because they are an elopement risk. Most cannot take indefinite time off of work to provide care for they loved one, so they turn secure memory care units. Special memory care units offer staff that has received specialized training in caring for those with cognitive impairment, activity programming, and extra safety measures such as secured exits. Unfortunately, even specialized care units have limitations such as inability to care for those with dementia with lewy bodies and behaviors such as chronic agitation and aggression. It is typical for a patient to move from the secure unity into traditional long-term, skilled care once they become physically unable to elope.

During my job shadowing experience, I was able to see first-hand the duties of the Memory Care Facilitator, Lisa Peasley. I was able to sit in on assessments of patients' cognitive level of function, which gave me insight on the progression of the disease. I was also able to observe and practice taking notes on patient behaviors and family interactions. These notes are used to track abnormalities in the patient's behaviors. The activity I felt was most significant during my research hours was attending care-plan meetings with the medical staff and family. It was following one of these meetings that I was able to interview the Cheryl Martin, daughter of patient, Betty Hamilton. Betty has been a resident of Beech Grove Meadows for six years and her daughter is still struggling to accept the progression of the disease and the care recommendations of the clinical team. Lisa was able to counsel her on local support groups to cope with the changes as well as provide insight as to why each recommendation was made in relation to an event that had taken place with her mother.

As a whole, it seemed to me that American Senior Communities is dedicated to progressive memory care. Their Auguste's Cottage model exhibits many care aspects that are unique and designed to promote the comfort and interaction of each patient as well as give staff and families a comprehensive understand of where the patient is staged in the progression to queue care-giving needs. Staff education leaves a lot to be desired. The staff was not shy in expressing their frustration that the promised training upon hire would take place anywhere form six to nine months after working with patients. There was also a lot of friction between the memory care unit and they rest of the skilled care unit; they seemed like two separate entities rather than one cohesive continuum of care. The staff member in charge of occupancy was overly pressured to maintain a full unit, despite the need for some patients to seek psychiatric care or progress to long term care, which caused friction with the Memory Care Facilitator who felt her staff could not meet the needs of some of the patients. Resources for activities are limited and upkeep of the physical unit did not seem to be a priority, which left me with several safety concerns.

This shadowing experience opened my eyes to the social stigma surrounding Alzheimer's disease. I was disgusted and saddened by some of my observations. Staff members called patients exhibiting abnormal behavior crazy and family and friends became distant from their loved ones because they did not know how to properly respond to changes in personality and behavior. I would like to believe that providers offering memory care have the best of intentions, but the care offered leaves much to be desired. Each family and patient has a unique story and set of needs and it is important to approach them as so, rather they expecting them to fit a mold. The care of patients with Alzheimer's is always evolving and education is key. Most importantly, through this Human Services journey, I learned that honesty and genuine apology go a long way.

The need for competent Alzheimer's care is in high demand in my community. Hospitals are overrun with patients needing placement in a secure unit for safety, but many cannot afford private pay, and there are many hoops to jump through in order to obtain insurance coverage and guardianship. For a person in crisis, there isn't enough time to meet all of the requirements, and the hospitals are pressured to discharge them due to cost, which can result in catastrophe if a patient is sent home to unsafe circumstances. I learned that there are care gaps, but most of them involve financial burden, which no one wants to assume and this issue is only going to increase as the baby boomers come of age.

Alzheimer's and other dementias are the top cause for disabilities later in life and each individual leaves loved ones affected by the disease progression. With no cure in sight, this means that the likelihood of a Human Services professional encountering the disease or someone coping with a loved one's diagnosis in a professional setting will increase monumentally in years to come. It is important to be aware and educated on the subject so we may best serve our communities.

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