As our population and life expectancy both increase in the United States the risk of developing a neurodegenerative disorder unfortunately also increases. From the moment of diagnosis to the very final stages of one of these diseases, that person is going to experience changes that will ultimately lead to a decrease in quality of life associated with that disorder. It's a major goal of any caregiver to monitor very closely various aspects of quality of life and then intervene in ways that improve or stabilize the individuals symptoms and their quality of living. Few of neurodegenerative disorders are frontotemporal Dementia, Amyotrophic Lateral Sclerosis (ALS), Huntington's disease, brain trauma, Parkinson's disease, Pick's disease, and Prion disease. Each disorders eventually lead to progressive neuronal cell death. Neurodegenerative disorders are the product of gradual degeneration and or cell death of neurons. Neurons are cells responsible for functions of the nervous system. The degenerative process affects brain function and body movements as in particular Parkinson's disease. Many will cause dementia leading to a decline in cognitive functions that negatively impact memory, thinking, behavior, emotions, learning, communication and language skills. The progressive deterioration neurons over the years chips away at the quality of life of both individuals and their families as well. Because people are living longer neurodegenerative disorders can linger longer than they did just a few short decades ago.

Definition of quality of life is a concept captures some very important factors including basic necessities of life, feelings of satisfaction with your life, health and general 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 sense of autonomy, sense of control and Independence. It relies on the social environments, the physical environment, a level of support from others around that individual, as well as quality of interpersonal relationships. Quality of life is almost always is the goal in the treatment of someone with a neurodegenerative disorder as well as some other type of incurable disease. This is because there are no pharmaceutical cures for any of these disorders. The causes are unknown. Healthcare professionals and caregivers will rely on medications for symptom management, psychosocial support and lifestyle factors to help that person cope with the disorder and live best life possible.

How does these disorders diminish the quality of life?

1.     Physical symptoms: neurodegenerative disorders can be very painful as in the case with multiple sclerosis and Parkinson's disease. Pain alone can lead to decrease in movement, activities of daily living and being socially active. Other physical changes leading to decreased quality of life include urinary and bowel complications.

2.     Mental symptoms: these disorders can lead to dementia, cognitive decline, forgetfulness, impaired memory and an inability to calculate or plan ahead as seen most commonly in individuals with Alzheimer's disease. People may experience confusion, hallucinations, delusions. They may also develop sleep disturbances and nightmare disorder.

3.     Emotional problems: quality of life may diminish greatly due to the emotional problems associated with any of these neurodegenerative disorders. The initial shock being first diagnosed can lead to stress, anxiety and depression. These symptoms can take a greater toll on that person's quality of living.

4.     Social issues: the individual may develop socially inappropriate behaviors like a lack of empathy, inappropriate affect, uncontrollable laughing or crying. These behaviors and others can make the individual and other people feel very uncomfortable and cause relationship problems as well as reduce social outings and activity. This unfortunately decrease quality of life. It's clear that neurodegenerative disorders negatively impact a person's quality of life in a number of ways. These disorders can 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.

What can be done to maintain or improve a person's quality of life?

1.     Take a fully-centered approach. It is important to focus on individual because everybody's different and everyone's coping style and mechanisms and everything else about them is different. Individuals will respond to various treatments and interventions in their own way. In other words, there's no one-size-fits-all approach and helping individuals and live their best life with neurodegenerative conditions.

2.     Symptom management is important because we have to help with hurting. Since there's no cure, the management of symptoms may improve or maintain quality of life. This can be achieved through the use of prescription for pain, spasticity, depression and lots of other symptoms. Psychosocial therapy can be effective in reducing behaviors stress anxiety and other behaviors. Physical, occupational or speech therapy can all be effective in areas like maintaining strength, improving mobility or dealing with any type of speech difficulty the individual might have. When cognitive symptoms develop various forms of therapy cognitive stimulation can be very effective in helping that individual maintain independence a little longer perhaps slow down the decline a bit. Cognitive stimulation can improve memory, attention and general cognitive functions especially among individuals diagnosed with Alzheimer's disease.

3.     Integrative Medicine is uniquely positioned to treat neurodegenerative disorders. Integrative Medicine is to treat the whole person, physically, emotionally, mentally, spiritually and more. It doesn't only treat acute symptoms of these disorders as they appear but considers all related symptoms that are associated with these disorders like pain and depression with the aim of improving quality of life.

4.     Focus on activities of daily living ADLs. One area that is greatly impacted by neurodegenerative disorders and deteriorates even more as these disease has progressed are the activities of daily living. These are basic activities that are done every single day. They're done routinely like showering, grooming, dressing, toileting, eating, 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 like paying bills, scheduling appointments and going out 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 the triggers and helping them to manage stress and cope with changes as they take place can improve quality of life. Breathing techniques, mindfulness, prayer meditation and other alternative methods can also improve quality of life.

Aging population is steadily growing in united states. People are living longer with chronic and debilitative illnesses including neurodegenerative disorders. Most experts agree that the number of people with these disorders is only expected to climb and with them a decline in quality of life. Perhaps the future will bring a better understanding until then doing whatever it takes to ensure that individuals live their best lives is our aim and our goal.

Credit: Dr. Jim Collins