As the older population and life expectancy increase in the United States, the risk of developing a neurodegenerative disorder also increases. From the moment of diagnosis to the final stages, the individual experiences changes and ultimately a decrease in quality of life associated with their disorder. It is therefore a major goal to closely monitor various aspects of quality of life and intervene in ways that improve or stabilize the individual’s symptoms and quality of living.
Neurodegenerative Disorders
There are many neurodegenerative disorders including frontotemporal dementia, amyotrophic lateral sclerosis (ALS), Alzheimer’s disease, brain trauma, Pick’s disease, prion disease, and Parkinson’s disease. Although each disorder is characterized by specific symptoms and clinical presentations, they all share one thing in common – progressive neuronal cell death.
Neurodegenerative disorders are the product of gradual degeneration and/or cell death of neurons, which are cells responsible for functions of the nervous system. The degenerative process affects a number of functions including body movement and brain function. Many will cause dementia leading to a decline in cognitive functions that negatively impact memory, thinking, behavior, emotions, learning, communication, calculation, and language.
Regardless of the disorder, the progressive deterioration over the course of years chips away at the quality of life of both individuals and their families. And because people are living longer, neurodegenerative disorders can linger longer than they did just a few short decades ago.
Defining Quality of Life
Quality of life is a concept that many experts and researchers have had a difficult time conceptualizing and quantifying. It attempts to capture factors such as basic necessities of life, feelings of satisfaction with life, and health and well-being. It represents a wide range of lived experiences while including physical, social, psychological, emotional, cognitive and spiritual dimensions.
Quality of life also encompasses an individual’s sense of autonomy, sense of control and independence. It relies on the social and physical environment, level of support from others, and quality of interpersonal relationships. It is a rather complex concept.
With this being said, quality of life is almost always the goal in the treatment of neurodegenerative disorders as well as some incurable diseases. It has to be the goal, because there are no pharmaceutical cures for any neurodegenerative disorder and causes are still largely unknown. Healthcare professionals and others will rely on medications for symptom management, psychosocial support, and lifestyle factors to help the individual cope with the disorder and live their best life.
How Neurodegenerative Disorders Decrease Quality of Life
One way to approach understanding how neurodegenerative disorders can diminish an individual’s quality of life, is to identify the symptoms and clinical manifestations associated with them. In doing so, it helps to place symptoms impacting quality of life into various domains including physical, mental, emotional, and social.
1. Physical Symptoms
Neurodegenerative disorders can be very painful, as is the case with multiple sclerosis and Parkinson’s disease. Pain alone can lead to a decrease in movement and mobility, activities of daily living and being socially active. These in turn can create a negative self-esteem and self-image. Pain is also associated with a greater sense of fatigue and poor sleep. Other physical changes leading to decreased quality of life include motor impairment, weakness, sexual disfunctions, and urinary and bowel complications.
2. Mental Symptoms
These disorders can lead to dementia, cognitive decline, forgetfulness and impaired memory, and an inability to calculate or plan ahead, as seen commonly with Alzheimer’s disease. Individuals may experience confusion, hallucinations or delusional thinking. They may also develop sleep disturbances, nightmare disorders, or REM sleep behavior disorder.
3. Emotional Problems
Quality of life may diminish greatly due to the emotional problems associated with neurodegenerative disorders. The initial shock when first diagnosed can lead to stress, anxiety and depression and as each disorder progresses, these symptoms can become worse and take a greater toll on the individual’s quality of life. Some individuals will show clinical apathy and become emotionally withdrawn. There is also a risk for thinking about suicide or attempting or completing a suicide.
4. Social Issues
The individual may develop socially inappropriate behaviors such as a lack of empathy, inappropriate affect, uncontrollable crying or laughing, and disinhibition. These behaviors, and others, can make the individual and others uncomfortable and cause relationship problems as well as reduce social outings or activity. In other words, the stigma of some neurodegenerative disorders can diminish quality of life.
Ways to Improve Quality of Life
It’s clear that neurodegenerative disorders negatively impact an individual’s quality of life in many ways. These disorders also cause great stress and burden on family members, friends and caregivers. Despite the fact that the cause of these disorders is still unknown, and there is no medical cure available, there are a number of things that can be done to maintain or improve an individual’s quality of life.
1. Start with a Person-Centered Approach
Since the goal is to improve or maintain a good quality of life, it’s important to focus on the individual and take a truly person-centered approach. Everyone is different and will cope with their symptoms in a variety of ways. Individuals will also respond to various treatments and interventions in their own unique way. In other words, there is no “one size fits all” approach to helping individuals live their best life with a neurodegenerative condition.
2. Symptom Management: Help What’s Hurting
Since there is no cure for neurodegenerative disorders, the management of symptoms may improve or maintain quality of life. This can be achieved through the use of prescription medications for pain, spasticity, depression, and other symptoms. Psychosocial therapy can be effective in reducing behaviors, stress, anxiety and other behaviors. Physical, occupational and speech therapy may also be effective in areas such as maintaining strength, improving mobility, or dealing with speech difficulties.
When cognitive symptoms develop, various forms of therapy such as Cognitive Stimulation, may help the individual maintain their abilities longer and slow the decline. Cognitive Stimulation can improve memory, attention, and general cognitive functions, especially concerning Alzheimer’s disease.
3. Integrative Medicine: Uniquely Positioned to Treat Neurodegenerative Disorders
The aim of integrative medicine is to treat the whole person – physically, emotionally, mentally, cognitively and more. It doesn’t only treat acute symptoms of neurodegenerative disorders as they appear, but considers all related symptoms like pain or depression in order to improve quality of life. Some experts believe that integrative medicine may slow the disease progression of these disorders.
4. Focus on Activities of Daily Living (ADLs)
One area that is greatly impacted by neurodegenerative disorders and deteriorates even more as the disease progresses is activities of daily living or ADLs. These are basic activities that are done daily and routinely such as showering, grooming, dressing, toileting, eating and walking. The individual will eventually become dependent in these areas, but working on them regularly can help with independence and confidence. Eventually, independent activities of daily living will become affected as well, including paying bills, scheduling appointments and shopping.
5. Stress Management
Symptoms and clinical manifestations associated with these disorders can cause great stress, anxiety and panic. Helping the individual become more aware of triggers, manage stress, and cope with changes as they take place can improve quality of life. Breathing techniques, mindfulness, prayer, mediation, and other alternative methods may also improve quality of life.
Final Thoughts on Neurodegenerative Disorders and Quality of Life
The aging population is steadily growing in the United States and people are living longer with chronic and debilitating illnesses including neurodegenerative disorders. Most experts agree that the number of people with these disorders is expected to climb for decades to come and with them, a decline in quality of living. Perhaps the future will bring a better understanding and cure, but until then, doing whatever it takes to ensure that individuals live their best lives is the goal.