Nervous System Disorders and Long-term Care
ContentsCommon nervous system disorders Physical effects of nervous system disorders Long-term care for nervous system disorders Common symptoms of a nervous system disorder Nervous system disorders effects on family members Financial considerations Legal concerns Nervous system disorder organizations
The nervous system is a large and complex network that runs throughout the entire body. It’s comprised of nerves that run to and from the spinal cord and brain. Because of its complexity and vital role in bodily function, there are many different medical issues that can arise in the nerves, spinal cord, and brain.
This guide covers the various long-term care options for seniors with nervous system disorders, legal preparation, financial support, effects on caregivers, and more.
Common nervous system disorders
The most common types of nervous system disorders may be categorized as either a disease process or according to what caused the disorder.
Some common types of nervous system diseases include:
- Alzheimer’s disease and other dementias
- Amyotrophic Lateral Sclerosis (ALS) (also known as Lou Gehrig’s disease)
- Parkinson’s disease
- Seizure disorders
Common nervous system disorders that may result due to an injury include:
- Acquired brain injury
- Various types of paralysis
- Herniated discs in the spine
Nervous system disorders may also occur due to birth defects, complications at birth, or inherited genes, including:
- Spina bifida
- Cerebral palsy
- Huntington’s disease
- Muscular dystrophy
Nervous system impairment may also occur due to cancerous tumors of the brain or spinal cord, due to nerve compression from a nearby tumor, or as a result of radiation or chemotherapy cancer treatments. Infections such as meningitis and Creutzfeldt-Jakob disease (also known as “mad cow disease”) may destroy brain tissue and lead to nervous system dysfunction.
Physical effects of nervous system disorders
Disorders of the nervous system may occur due to injuries, degenerative disease processes, infections, inherited conditions, cancer, and birth defects. Because the nervous system affects every aspect of our ability to function and interact with our surroundings on a daily basis, a variety of functions may be impaired (depending on the type of nervous system disorder).
A nervous system disorder may cause impairment of any of the following of functions, depending on the type of disorder:
- Impairment of any of the five senses such as hearing, sight, smell, taste, or touch
- Problems walking or moving any part of the body
- Problems with eating,
- Problems with breathing
- Problems with memory, learning, or concentration
- Problems with mood and difficulty controlling one’s emotions
Long-term care for nervous system disorders
The care needs of individuals with nervous system disorders vary greatly depending on the type of nervous system disorder they have and their degree of nervous system impairment.
For example, an individual may have some numbness and pain down one leg and into their foot as a result of sciatica or a leg injury which caused damage to the sciatic nerve. However, a person with this type of impairment will still be able to function quite well independently. In contrast to this, another individual may have ALS and in the late stages of the disease, they may be unable to move, eat, or even breathe on their own.
Depending on the type and extent of nervous system impairment that an individual has, they may require assistance with activities of daily living (ADLs) which include daily personal tasks such as eating, bathing, dressing, mobilizing, and toileting.
In addition to these basic personal tasks that people perform on a daily basis, there are other daily tasks known as instrumental activities of daily living (IADLs) that individuals may also need help with depending on their level of impairment. These include activities such as housekeeping, meal preparation, laundry, yard maintenance, transportation, paying bills, and buying groceries.
Common symptoms of a nervous system disorder
The types of symptoms that an individual has as a result of a nervous system disorder again depend on the type of disorder and its severity. Some common symptoms of nervous system disorders include:
- Headaches that begin suddenly, change, or continue despite treatment
- Development of seizures
- Tingling or sensations of numbness anywhere in the body
- Problems with memory, concentration, or confusion
- Vision changes or loss of sight
- Difficulties speaking or understanding speech
- Sudden or progressive muscle weakness
- Problems walking, standing, or climbing stairs
- Problems using the hands and fingers
- Poor muscle coordination and/or balance
- Muscle spasticity or rigidity
- Neck or back pain that radiates to the arms, legs, or buttocks
The symptoms of a nervous system disorder may be very mild or severe and they may affect many body systems or be isolated to one part of the body.
Because the effects of a nervous system disorder on a person may be minimal or may result in a person needing different levels of assistance to meet their daily needs, the effects will be very individualized to each person’s disorder and their level of impairment.
Nervous system disorders effects on family members
The effect that a nervous system disorder has on a spouse, caregiver, or other family members will depend on the type of nervous system disorder that an individual has and the severity and extent of their symptoms.
A spouse or family members may find they need to provide very little assistance and support to the person with a nervous system impairment or they may be fully involved in assisting the person to meet their daily needs.
Caregivers who are responsible for assisting an individual on a daily basis may begin to feel the stress of these caregiving responsibilities over time and may be at risk of burnout. It is strongly recommended that caregivers seek out a support group either in person or online with other caregivers who are in a similar situation for both emotional support and tips on self-care when caregiving.
Caregivers may also want to consider respite care if they need a break from caregiving for personal reasons, to run errands, or to tend to other responsibilities.
Depending on the level of assistance and medical care that an individual needs, a spouse or family may find also find themselves experiencing financial strain due to the cost associated with care.
The amount of personal care, medical care, and ongoing
Depending on the type of nervous system impairment and its severity, an individual may be eligible for financial and medical benefits under a number of different programs. Some potential sources of financial assistance include:
- Social Security disability insurance (SSDI)
- Supplemental security income (SSI)
- Program of all-inclusive care for the elderly (PACE)
- Veterans benefits
If a person is 65 years or older, is disabled, or blind, they may be eligible for financial assistance through Medicare. In order to be eligible for Medicare benefits due to a disability, a person must meet the criteria of “disabled” as set out by Medicare.
There are a number of different Medicare plans that provide different types of coverage for treatment in inpatient facilities including rehabilitation centers, medical insurance, and prescription medications.
It is important to note, however, that Medicare does not usually pay for home care or custodial care if skilled nursing or medical care is not needed. Medicare also does not pay for care in a long-term care facility. These types of services would need to be paid for through private pay or through long-term care insurance.
Medicaid is a state-run program designed to provide financial assistance with health care costs for those with low or little income. Each state has its own guidelines and criteria, particularly regarding assets and maximum income allowable in order to qualify. Each state must also adhere to federal guidelines regarding administration of Medicaid funding.
Social Security Disability Insurance (SSDI)
An individual is considered “insured” and eligible for this type of Insurance if they have worked an adequate length of time according to the program’s criteria and paid enough Social Security taxes. The benefit of this program is that family members and spouses of individuals who are working or who have worked are also covered under this program if the working individual meets the criteria noted above.
Supplemental Security Income (SSI)
Unlike SSDI, a person may be eligible for financial assistance due to disabilities arising from a nervous system disorder without having worked necessarily. Like Medicaid, SSI is a program designed to help the elderly, disabled, and blind who have little to no income. Use the official SSI website to determine eligibility for SSI.
Programs of All-inclusive Care for the Elderly (PACE)
If an individual is a veteran and has a nervous system disorder or if their spouse suffers from a nervous system disorder, they may be eligible for benefits through Veterans Affairs. For more information, determine eligibility for veterans benefits through the U.S. Department of Veterans Affairs.
An individual with a nervous system disorder is encouraged to consider having some legal documents prepared, such as power of attorney, a living will, and a simple will if they have:
- A degenerative disease or disorder that is causing their nervous system impairment
- Other chronic health conditions in addition to their nervous system disorder
- Complex and or significant impairments
While these legal documents are a good idea for all people to have, they become particularly important for an individual with a medical condition that is expected to get worse or that is complex and involves a significant level of disability.
Power of attorney (POA)
Power of attorney (POA) is a legal document that allows an individual (referred to as the “principal”) to appoint another person (known as the “agent”) to make decisions on their behalf. The POA document usually specifies that this power is only granted when the principal is unable to act on their own behalf.
A POA document may be prepared as a general POA in which the agent is granted powers to do a wide variety of things on behalf of the principal. Alternately, the POA may be prepared as a special or limited POA such as a financial POA or a health care POA which limits the agent’s powers to make financial decisions or health care decisions for the principal respectively.
It is strongly recommended that an individual with a degenerative or complex nervous system disorder and their family speak with a legal representative to learn more about power of attorney and what documents should be prepared given their unique situation.
A living will is a legal document in which an individual defines what kind of medical care they do and do not wish to receive if they become unable to make these choices known at some point in the future.
This often includes decisions about end-of-life care including resuscitation measures, nutritional support such as insertion of feeding tubes, ventilation support, and administration of antibiotics for infections to name a few medical interventions.
A living will
However, a living will can also simply provide medical direction to health care personnel if an individual chooses not to prepare a POA document.
Preparation of a basic will is another important legal document that should be prepared by individuals with any chronic health conditions but is particularly important for seniors living with more complex nervous system disorders. Knowing that one’s assets and belongings will be distributed according to one’s wishes can bring great peace of mind.
A will can also provide many benefits to a surviving spouse and family when an individual passes away. Preparation of a will can be very simple or more complex, depending on a person‘s wishes and the size of their estate. Consultation with legal counsel regarding the preparation of a will is recommended, particularly for individuals with significant assets.
Nervous system disorder organizations
There are a number of different organizations/non-profits for those with nervous system disorders and their family members, including:
- ALS Association
- Alzheimer's Disease Association
- American Council for Headache Education
- American Heart Association
- American Medical Association
- American Pain Foundation
- American Parkinson Disease Association
- American Stroke Association
- Brain Aneurysm Foundation
- Brain Injury Association of America
- Brain Tumor Society
- Epilepsy Foundation
- Guillain-Barré Syndrome Foundation International
- Meningitis Foundation of America
- Muscular Dystrophy Association
- National Headache Foundation
- National Institute of Neurological Disorders and Stroke
- National Multiple Sclerosis Society
- National Parkinson Foundation
- National Spinal Cord Injury Association
- National Stroke Association
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
Leona J. Werezak RN, BSN, MN is a registered nurse and adjunct nursing professor. She has 24 years experience working in a variety of healthcare settings including such remote locations as the Arctic Circle. Her research in early stage dementia was published in the Canadian Journal of Nursing Research and re-published in their 40th anniversary issue which showcased exceptional research published since the journal began. Her work in dementia care has also been published in the Journal of Gerontological Nursing. She currently teaches surgical nursing care on a thoracic/vascular unit to baccalaureate nursing students. Her clinical work with nursing students involves extensive work with older adults who have multiple chronic health conditions.