The Effects of Aging and Cerebral Palsy
By: JessePaul

Studying the effects of aging on people with cerebral palsy is a short course as there simply is not much research on the subject. Until recently (with in the past 15 years) people with Cerebral Palsy  have not lived that long. Today, improved medical care is extending our lives. Therefore, we need answers to what we can expect as time wears on us.  Older adults with CP have come to experience the natural aging process in combination with other impairments which has imposed a number of physical, emotional, and financial consequences on their lives (UCPA, 1993). It is essential that health and human services are dedicated to the needs of this population. The health concerns and psychosocial issues must be addressed so that older individuals with CP may continue to live independently with peace of mind.

Young Adults

The transition into adulthood is a challenge for most young adults, and the degree of additional challenges in the course of this stage depends on the individual and his or her family, as well as the severity of impairment. Physiologically, an adolescent who has CP undergoes the same changes as their peers, however, psychologically, having a disability makes it difficult to develop a positive and healthy self-image. Fatigue is commonly a result of psychological stress in response to the enormous array of changes that take place in one's life during this period. Employment and development of social skills that foster intimate relationships are seen as pressing issues for the majority of young adults. Independence is a key component of success in the aspirations of people at this age, and for an individual who is disabled, the psychosocial implications of dealing with inclusion and discrimination are pervasive. 

Older Adults

As the adult experiencing the effects of normal aging, there are many physiological and psychological factors which impact the course of this period. Literature which examines the issue of older adults with CP agree that the aging process begins to affect them more quickly and at a younger age than non-disabled people (UCPA, 1993; Overeynder et al., 1994; Miller & Bachrach, 1995). The physical challenges of CP intensify with age, frequently resulting in increased spasticity, fatigue, and the loss of strength and mobility (CPA, 1994). Rapid aging in combination with a lack of assistance and professional awareness increases anxiety for older adults. 

A total of 279 adults with cerebral palsy from across Australia responded to a survey which sought information about their health, modes of communication, access to information and perception of their own aging process. Results indicated:

Adults with Cerebral Palsy and those who deliver services to this population have both expressed some concern that individuals with Cerebral Palsy may experience negative effects of the aging process earlier than non-disabled individuals.  People with CP generally notice the effects of aging at an earlier age, with a more rapid decline in function than in the non-disabled majority. Disabilities which have a long duration can produce excessive wear and tear on the muscular, skeletal, and other body systems. As such, individuals with CP are experiencing unexpected declines in function and energy levels prematurely. These effects have been found to occur as early as thirty years of age (UCPA, 1993).

Arthritis is a common condition found in people with cerebral palsy.  Statistics show that 40% of the people with cerebral palsy get arthritis at an early age. Other secondary health problems often appear at a more serious level because of cerebral palsy, the primary disability. I have personally experienced this as I have become older, particularly in my knees. On rear occasions it can be pretty unbearable.

Even without the complication of another disability, the aging process itself has its impact. As people with Cerebral Palsy get older, they take longer to do things such as walking, dressing or eating. They may require a personal assistant to complete the task. They slow down physically and can't do as many things as they once did when they were young. I personally have tried to keep myself in shape as much as is physically possible, but I have noticed over the years it has taking me longer to do daily activities. I have especially noticed this in trying to get dressed each day.

Depending on lifestyle and type of disability, living 20 to 30 years with a disability can produce wear and tear on the muscles and other body systems. Most people with major physical disabilities of a 30-year duration note some tenderness and soreness in joints, as well as muscles and tendons that have been carrying an extra load because of impaired physical functioning in other parts of the body.

Most people born with a disability know from early childhood that they are differently able than their non-disabled peers. This somewhat prepares them for the effects of aging. Others with disabilities, however, are sometimes very surprised when the aging process accelerates and they experience an unexpected decline in their energy and activity levels.

The work place is often where social supports and other resources are developed. So the transition to retirement causes a variety of concerns for people with cerebral palsy including health care, loss of income and loss of contact with friends. They are often forced to retire due to physical limitations and lack of flexible work schedules.

Furthermore, the transition from being able to walk either independently or with a device to not walking at all has profound psychological effects. Some people have been raised with the thought that if you walk you will pass. For today's generation, dependence means more than giving up freedom and social status; loss of dependence raises the threat of being placed in an institution. Given this threat, it is no wonder that there is a fear of growing old in the CP community.

Unfortunately, there is not much authoritative information available to help deal with these problems. The combination of aging and a disability is an unexplored area and each person is different, depending on the severity of the disability. There are doctors who specialize in children with CP, but very few doctors specialize in adults with cerebral palsy, let alone health concerns associated with advancing age.

One of the most pressing concerns is that physicians are incapable of effectively guiding and developing the most effective practices to treat their condition. Additionally, older adults with CP express a difficulty in locating doctors who are willing to provide care for them. Inadequate information on preventative care seems to be the underlying issue concerning the deficit in medical attention for adults with CP. One study used a representative population and revealed that an overwhelming proportion (90 per cent) of adults with CP do not receive periodic general health evaluations.

Lack of medical attention advances the onset of secondary conditions which will often produce greater need for specialized care. Secondary conditions which affect people who are aging with CP include: changes in mobility, increased fatigue, spasticity, increased pain, possibilities for developing arthritis, incontinence, and musculo-skeletal problems (Overeynder et al., 1994). Studies have examined the prevalence of other secondary conditions in older individuals with CP. Janicki (1989) revealed that aging is linked to increases in the rate of visual, auditory and ambulatory impairment, in addition to decreases in levels of independent functioning in the activities in daily living. A positive conclusion drawn from this study is that the occurrence of seizure disorders decrease with advancing age.

The results of a study of the medical and functional status of 101 adults with cerebral palsy aged 19-74 years conducted in the USA indicated that the people experienced infrequent general health problems. However, both males and females  experienced problems with urinary tract infections and incontinence.   

Some other responses included: Difficulty access to medical facilities including examination rooms and equipment. Further studies showed that pain occurred at a relatively young age and  was prevalent in subjects under the age of 50. There was a high frequency of hip and knee pain; painful joints were the reason given by subjects for cessation of walking. Murphy et al. (1995) concluded that in the USA preventative health care for adults with cerebral palsy was almost nonexistent and that the medical profession may be unaware of the problems experienced by adults with cerebral palsy.

The advice received from several health professionals was to concentrate on strengthening specific muscles. However, another highly recommended doctor had some very different advice regarding energy conservation, exercise and mobility aids. He felt muscle strengthening would not be that helpful because the unevenness in cerebral palsy comes from imbalance in the degree of damage in the brain motor    cortex. A person with cerebral palsy could strengthen muscles all he wanted, but eventually they would return to being unequal in strength. In his opinion, the time and energy spent exercising is not worth the temporary, if any, results.

Because medical technology is improving, people with cerebral palsy are living longer. In April, 1993, a group of professionals and people with cerebral palsy formed a task force to examine aging in people with cerebral palsy. The Task Force on Aging and Cerebral Palsy made recommendations in prevention and intervention, training and education, research and policy. Recommendations in research include advocating for the funding of selected projects focusing on prevention, as well as giving priority to projects with immediate and practical application for people with cerebral palsy. The policies recommended are: first, to include persons with cerebral palsy and their families in all aspects of evaluating and decision-making; and second, to ensure that health care reform provides adequate coverage for adults and older people with cerebral palsy.

Psychosocial Issues

The inadequacies of health professionals in the domain of aging and persons with cerebral palsy has had a direct impact on the psychosocial well-being of those affected. Inability to function at previous levels often result in a loss of motivation and desire to achieve goals, and may ultimately precipitate more detrimental health problems. The primary concerns of adults with CP include independence and employment. The decline in energy and daily life skills is first noticed when their life is occupied with activities that are directly linked to these concerns.

Independence.

Independence is a highly valued and respected attribute of people in our society. The achievement of an independent lifestyle for many people with CP is an even greater accomplishment. Loss of function that accompanies the aging process threatens independence. It is a factor which is part of the nature of involvement in many aspects of life. With the lack of support in the medical community, the struggle to maintain the current level of functioning and independence is an enormous undertaking. It is reasonable to hypothesize that, for people experiencing aging with CP, with the necessary resources and social support, the accelerated aging may be slowed, and consequently independence may be kept into old age. Janicki (1989) reported that "a great proportion of older individuals with cerebral palsy are institutionalized either in public residential or nursing facilities", which supports the conclusion that an early onset of aging leads to a subsequent loss in independence. For the psychosocial health of these individuals, steps must be taken to assist in the preservation of independence in older adults.

Employment.

It is widely accepted that employment is an important aspect of an adult's psychological health. As in the case of independence, employment is inherently associated with social status and self-worth. Discrimination and prejudice are often barriers to development of career opportunities, therefore attainment of secure employment is regarded as a great achievement. The physical effects of many of the secondary conditions may render the individual incapable of performing specific duties they once executed effortlessly.

In general, for all individuals, any decline in functioning has an enormous psychosocial impact. Depression and stress are words commonly used to describe the effects of growing old quickly, at a young age. The physiological stressors associated with aging, particularly in the later stages of life, may hasten the declines in functional ability (Overeynder et al., 1994). Deficiencies in social awareness regarding this matter reinforces the hopelessness and isolation many of these people feel.