Caring for an Adult
The care options available to adults with cerebral palsy vary widely by state. If you have a child with cerebral palsy who will soon legally become an adult, here are some of the care options you may choose:
- The adult can remain at home where you are the primary caregiver
- The adult can continue to stay at home and in-home nurses may assist you in providing care
- Assisted housing (SSI is used to help pay living expenses while the individual lives independently in an apartment)
- Group home (Private residences for people with a common condition that may accommodate light medical conditions)
- Nursing home (Private residences for people with significant health deficiencies and intense medical needs)
- Institutional care (The most intense personal care available provided in a state-regulated facility)
The guideline most experts advise is to provide care in the “least restrictive environment.” In the list provided above, the adult’s home is the least restrictive environment, while an institution is the most restrictive environment.
Factors involved in determining where the adult with cerebral palsy lives include:
- The wishes of the adult affected by cerebral palsy
- The wishes of his or her parents
- The ability of the individual with cerebral palsy to function independently
- The resources available to help people with cerebral palsy live on their own in your community
Other Considerations When Caring for Adults with Cerebral Palsy
Carding for adults with cerebral palsy also revolves around many of the issues you would expect such as:
- Pain management
- Engagement in activities
- Participation in society
The presence of physical pain is a large determinant in the quality of any person’s life, and especially so in the case of the adult with cerebral palsy. While it is unclear to what extent constant and chronic pain are present in individuals with cerebral palsy, it is clear that the majority of people with cerebral palsy are significantly affected by pain on a regular basis.
Among the common types of pain faced by adults with cerebral palsy are back, hip, and lower extremity pain, pain associated with low bone mineral density and fractures, and pain resulting from unhealthily high or low levels of weight.**
Researchers have identified four strategies that help individuals to adjust to and reduce their pain long-term:*
- Task persistence, which is continuing to perform a particular task despite the presence of pain
- Attention diversion, which takes one’s mind off of pain by helping him or her focus on other thoughts (Starting a conversation to distract from an individual’s focus on pain)
- Reinterpretation of pain sensations (Thinking of pain as something else that is not a part of you)
While none of these strategies totally solves an individual’s pain, they do help to reduce its presence long-term when compared to individuals who do not use these strategies.
*According to Dr. Gregory Liptak, Current Opinion in Neurology, 2008, 21:136-142
**According to Dr. Laura K. Vogtle, Developmental Medicine & Child Neurology, 2009, 51:113-121
Engagement in Activities
In all adults, including those with cerebral palsy, the more engaged they are in social activities, the happier and more fulfilled they feel. Those who are more socially engaged also live with less pain and enjoy longer lives.
While many times it may feel as though social opportunities for adults with cerebral palsy are limited, there are typically many opportunities available in metropolitan areas. Contact your local department social services, or one of many national disabilities organizations for more information.
Participation in Society
In just about every study performed, researchers have found lower levels of participation in society for individuals with cerebral palsy than for those without. Commonly researched factors include participation in employment, community living, engagement in leisure activities, and taking responsibility.
Any way an individual’s participation in any of these activities is encouraged or made possible is of strong benefit for an individual with cerebral palsy.
Common Personal Care Issues Faced by Adults with Cerebral Palsy
You may or may not realize the full extent some physical limitations play in the life of a person with cerebral palsy. Take a moment and examine some of the challenges faced by adults with cerebral palsy you may have to help them monitor:
- Hearing and Vision challenges – Many adults with cerebral palsy have never had an eye exam. Regular checkups for auditory and visual perception should be implemented for any adult with cerebral palsy.
- Cardiovascular monitoring – Heart attacks and high blood pressure occur in people with cerebral palsy at the same rate as is found in the general population (Remember heart disease is the leading killer of men and women in the United States). The lower extremities may swell as a result of poor tone in veins. Cholesterol may be high due to a lack of activity.
- Respiratory issues – Aspiration, which is when solids enter the lungs or airway, is a common problem. Regular aspiration can lead to fibrosis (scarring) of the lungs, which destroys a part of the lungs. This leads to quick deterioration of the lungs during future episodes, and these episodes require urgent medical attention.
- Gastrointestinal difficulties – For people with cerebral palsy, food often moves poorly through the gastrointestinal system, which leads to constipation or vomiting. Because the stomach may also not empty properly, reflux of stomach acids may occur for many years, leading to inflammation and bleeding.
- Musculoskeletal problems – Degenerative arthritis, especially in the hips, is more common in people with cerebral palsy than in the general population. Osteoporosis is also a concern, as people with cerebral palsy do not produce enough vitamin D or receive enough calcium.
- Sexuality – Puberty often occurs during late adolescence or early adulthood, much later than is typical for people unaffected by cerebral palsy. Counseling for puberty may be a concern for people with cerebral palsy as they enter young adulthood.
- Nutritional challenges – Many people with cerebral palsy have a much lower than average body mass. As a result, a primary concern will be helping those with cerebral palsy develop a diet high in protein.