Neurodegenerative disorders are chronic, incurable, and progressive diseases that ultimately end in the death of the individual. These disorders present themselves and progress in a multitude of ways depending on the type of neurodegenerative condition and the individual. Regardless, each disease will present challenges for the person, family and caregivers, especially towards the end of life. Such challenges include the variability of disease progression, physical and cognitive decline, and management of symptoms, especially pain.
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All neurodegenerative disorders share a common pathological cause, marked by progressive neuronal loss. Such loss can be caused by neurovascular changes, changes in blood-brain barrier permeability and cerebrovascular fluid flow, neurotoxic substances such as oxidative stresses or amyloid protein and genetic predisposition. Another characteristic shared by these disorders is the “long goodbye” experienced by everyone involved in the person’s care. As these diseases progress, identity is lost, autonomy diminishes, individual independence disappears until death claims the person’s body and soul. Quality of life and comfort become central themes in care, not only for the patient, but for their family as well.
A Brief Review of Common Neurodegenerative Disorders
While millions of Americans are affected by neurodegenerative disorders, almost 6 million people are diagnosed with Alzheimer’s and 500,000 people are currently diagnosed with Parkinson’s disease. These are the most common types. Worldwide, over 1 billion people are diagnosed and suffer from these illnesses. Other neurodegenerative disorders include Motor Neuron Disease, Huntington Disease, Multiple Sclerosis, Stroke, and Amyotrophic Lateral Sclerosis or ALS. There are many others including HIV, Creutzfeldt-Jakob Disease, Frontotemporal Dementia (Pick’s), and traumatic brain or spinal injury.
The diagnosis of one of the diseases is the beginning of a life-changing journey for millions of people. One’s world can literally be turned upside-down. Diagnosis is only the start of a long, progressive course towards the gradual loss of dignity, individuality and life itself. There will be many burdens to the person, family and caregivers. (See also, Engaging Older Adults Diagnosed with Neurodegenerative Disorders) Non-curative intervention including symptom control, comfort, and measures to enhance quality of life will be delivered by skilled staff in care facilities and hospice. Preventing and relieving suffering, assessing and treating pain, and assessing the individual’s physical, psychosocial and spiritual needs will all be critical in the care of an individual diagnosed with a neurodegenerative disorder. Of great importance will be following through on the wishes of that individual during their care and at the end of their life. Hospice can be a very important and effective approach to all of these things.
Managing End of Life Care
The needs of individuals with neurodegenerative disorders will vary according to many variables including to the diagnosis, the stage of the disease, the variability or progression, and the individual him- or herself. Some needs will be very common while others may be more specific, especially towards the end of life. For instance, some individuals will receive an early diagnosis and start treatments and care quickly, while others will be diagnosed later in the disease progress, and unfortunately not receive the care necessary to manage symptoms and improve quality of life.
How the disease progresses is important and can dictate the type and intensity of care. A disease may have an acute onset leading to either death or recovery, in the instance of a stroke. On the other hand, the progression may be prolonged with deterioration over a lengthy period of time, as in cases of Parkinson’s or Huntington’s disease. Or, in the case of Multiple Sclerosis, needs will vary as the disease fluctuates across time. Regardless of disease progression, they all end in a final deterioration and death.
An important end of life issue is treating both physical and cognitive disability. Many changes can take place, such as mood changes, communication difficulties, cognitive decline, or more complicated neuropsychiatric conditions such as:
- Dementia due to Alzheimer’s, Parkinson’s (Lewy body dementia), frontotemporal disorder and Multiple Sclerosis
- Severe cognitive changes due to Huntington’s disease
- Depression and cognitive change due to Multiple Sclerosis
- Hallucinations, neuropsychiatric decline, agitation and confusion due to Parkinson’s Disease
- Behavioral and mood changes, impulsivity, and loss of judgment due to any of the neurodegenerative disorders
This, unfortunately, is a short list of possible psychiatric complications that can arise with any neurodegenerative condition. Any of these can affect not only how care is delivered throughout the course of the disease, but particularly at the end of life. They can interfere with how care is planned and cause distress to family and caregivers. Each of these changes chip at the person’s self, personality, independence, dignity and autonomy. They can indeed complicate an already complex clinical condition and make matters worse for everyone involved.
Identifying when an individual with neurodegenerative disorders requires hospice is crucial because it enables the beginning of clinically appropriate and necessary care to manage symptoms and promote quality of life. Talking with the person and their loved ones is a necessary first step. Organizing care around the interdisciplinary team is also important. There may be individuals who are reluctant to bring up hospice, but the complexities involved in end of life care are plenty and should be handled by those who are best prepared to deliver it.
Final Words on Neurodegenerative Disorders and End of Life Care
Neurodegenerative disorders already affect millions of people in the U.S. and roughly 1 billion around the world. These numbers are expected to rise, particularly in the U.S., due mainly to the increase in life expectancy and the massive Baby Boom Generation. These conditions carry heavy burdens for everyone. The specific disorder, rate of progression, cognitive and physical deterioration, neuropsychiatric symptoms, communication problems, loss of independence and eventual death require the appropriate type of care that not only skilled care centers can provide, but especially the kind of care delivered by compassionate and intelligent hospice professionals.
(NOTE: Interested in learning more about Neurodegenerative Disorders? Checkout my Neurodegenerative Disorders on CEU Academy and try a FREE CEU today!)
More Neurodegenerative Disorder Articles
- Engaging Older Adults Diagnosed with Neurodegenerative Disorders
- Amyotrophic Lateral Sclerosis (ALS) and End of Life Care