Aging and cerebral palsy Evidence from research outcomes Dr. Saleh AL-Oraibi, PhD, MCSP, Associate professor/ Physiotherapy and rehabilitation. so55@hu.edu.jo soraibi@hotmail.com

Presentation overview Background information about ageing for people with cerebral palsy(PWCP) Aims and objectives Methods used to collect information Consequences of ageing process for PWCP Strategies to reduce these consequences Conclusion and recommendations All information here are based on research evidence

Background information Recent research indicates that PWCP age early and they experience an increase pain, muscle and joint fatigue, depression and loneliness, and feelings of isolation as they age. Families of PWCP can also experience a range of overwhelming problems and consequences following ageing process. However, research suggests that people with cerebral palsy and their families are in need for information about cerebral palsy and its ageing process. The needs for information have been identified in studies in developed countries but it is even more urgent for PWCP and their families in Arab region because the day-to-day responsibility of caring for these individuals remains largely with their families. Everybody ages, but for those with CP, Due to poor mechanical efficiency, people with CP may experience the effects of ageing earlier than expected.

Aim and objectives The aim of this systemic review was to look at the research current evidence related to CP and ageing process and its consequences. The objectives was to: provide people with cerebral palsy and their families with information to help them manage the consequences of CP ageing process. To provide also important information for health professional who work with them.

Methods The search was done in different data bases such as AMED, Medline and CINHAL to identify research articles related to CP ageing process[11] Then a review was performed to summarize findings of intervention studies and their recommendations to reduce PWCP ageing consequences. All studies were conducted in developed countries with limited research in developing countries including Arab region. To translate the findings of this report into action, a detailed report of the recommendations drawn from the findings will be presented. Additionally, providing information about cerebral palsy and its ageing process reduces the depression and worries of people with cerebral palsy and their families.

Consequences of CP ageing process Physical consequences Social consequences psychological consequences Other consequences Although people with CP are considered to have a normal life expectancy, the physical challenges of CP may intensify with age (such as increased spasticity, fatigue, loss of strength and declining mobility), and these physical challenges can in turn lead to increased stress and anxiety.

Physical consequences They Lose some of the mobility they gained as children(75% by age 25) Early onset Osteoarthritis (27%) An increase in fatigue Falling accidents (Elevated fracture rates ) Increased involuntary movements Joints and back pain Increase in muscle spasms Bone loss and early osteoporosis Increase in joint contractures and deformities and Postural problems They consider that this is due to: weight gain and lack of therapy and exercise. Declining mobility from muscle and bone loss Early onset arthritis caused by excessive joint wear and tear

Reduced self confidence Social consequences Dependency Reduced self confidence Social isolation My caused by overproduction environments. The quality and the frequency of social contacts are often unexpectedly decreased especially if adult with cp has no access to appropriate facilities such as day centres and clubs etc. This may have important implications for adult PWCP who live in developing countries where facilities for people with disabilities in the community are not available or are indeed accessible . Social isolation due to non-supportive environment and attitudes Especially with those who has deficient communication skills .

Psychological consequences Depression Increased stress Increased anxiety Emotional disturbance The stresses of aging and cerebral palsy will be lessened if a person is unable to maintain a positive personal attitude through a supported environment. Both social and psychological consequences will have impact on families and parents in particular mothers.

Other consequences Negative effects from the long term use of medications. Gastro intestinal problems. Decline in dental health from poor dental maintenance in youth. Weakness caused by poor nutrition intake Other consequences which contribute to aging include: Gastro intestinal problems (due to lack of mobility, poor nutrition intake and medications)

Non pathologic aging process Loss of hearing Loss of visual acuity social isolation confusion apparent loss of skill.

Can we prevent and reduce the impact of ageing for people with cerebral palsy Research answer, yes How?

Recommendation to reduce the impact of Ageing for PWCP consequences Exercise & physical Therapy Socializing Nutrition Proper managment and care are necessary to maintain health and wellbeing,

Exercises & Physical Therapy Strength training improve physical function of adult with cerebral palsy (Taylor, et al., 2004). Increasing physical function: for example, community Gym, sport, swimming, horse riding etc Studies have also shown that adults that had a large amount of childhood physical therapy (4 to 5 times a week) over a long period of time (4 plus years) have less ageing consequences. Improve PWCP quality of life Increase independency(Choy N, et al.,2003 How to deal with it

Socializing Socializing plays a big part in everyone's life, whether its at school, work, or at home with their family. The ability to participate in the community, or the absence of this, is a key role in the overall health of a person with a disability. Without mobility, however, socializing can be extremely difficult. Patients can be confined to wheelchairs, or lack the resources of a simple ride to a function or event. Some also lack a dedicated family, or friend, that visits on at least a semi-regular basis.

Nutrition Nutrition, which is important in everyone’s life, is especially important in a person dealing with aging and cerebral palsy. A proper diet including foods high in fiber and low in fat is preferred. A proper diet will help prevent constipation and weight gain, while increasing energy levels. This should be supervised by specialized dietitions Whole grain breads, oatmeal, brown rice as well as vegetables like carrots, green beans, potatoes with skin, and tomatoes are all high in fiber. All fruits are generally high in fiber in addition to beans, meat, poultry, fish, and eggs.

Proper management and care Seating and posture with help of occupational therapy Spinal monitoring Monitoring of stiffness and contractures Maintaining range of joint movement Upright walking posture and persistence with walking Maintaining rehabilitation program Family education and involvemnt For all these reasons particular attention needs to be paid to

Conclusion This review paper highlight a number of important issues related to cerebral palsy ageing process and provides guidelines for people with cerebral palsy and their families of how to cope with the sequences of ageing and will allow parents to play their role effectively. These guidelines will also inform policy makers, health and social professionals, service providers with important information to help them dealing with their clients ageing process issues. This review shows that exercises, socialising and a proper diet will reduce the effects of ageing process for PWCP.

Recommendations Families and PWCP must be given appropriate information about ageing process. This information should be tailored to the needs of each individual. Other professionals, including rehabilitation nurses, social workers and psychologists need to be involved in helping PWCP and their families in the community. In order to reduce the impact of ageing process for PWCP, policy makers, health and social professionals, service providers should provide sufficient information and support for PWCP and their families. Families and PWCP must be given appropriate information about ageing process at an early stage as well as at later stages. There must be a systematic approach to making sure that information tailored to the needs of each family is given to them as it is needed. Other professionals, including rehabilitation nurses, social workers and psychologists need to be involved in helping PWCP and their families in the community. So, its our responsibilities to reduce the sequences of PWCP ageing process

Refernces Balandin & Morgan, 1997. Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What’s happening? Journal of Intellectual and Developmental Disability, 22, 109–124. Crichton, J. U., Mackinnon, M., & White, C. P. (1995). The life expectancy of persons with cerebral palsy. Developmental Medicine and Child Neurology, 37, 567–576. Janicki, M. P. (1989). Aging, cerebral palsy, and older persons with mental retardation. Australia and New Zealand Journal of Developmental Disabilities, 15, 311–320. Lennox, N., Cook, A., & Rawicki, H. B. (1997b). Adults with cerebral palsy: Getting off on the right foot. Modern Medicine of Australia, 85–96. Kailes, J. I. (1993). Aging with a disability: Educating myself. The Networker, 7(1), 6–9. Murphy, K. P., Molnar, G. E., & Lankasky, K. (1995). Medical and functional status of adults with cerebral palsy. Developmental Medicine and Child Neurology, 37, 1075–1084. Overeynder, J. (1994). Aging and cerebral palsy: Pathways to successful aging. The UCPA Networker, 7, 2–4. Overeynder, J., Turk, M., Dalton, A. J., & Janicki, M. P. (1992). I’m worried about the future: The aging of adults with cerebral palsy. Albany, NY: New York State Developmental Disabilities Planning Council. Schwartz, B. (1994). Aging for persons with cerebral palsy. Communicating Together, 12(3), 14–15. Turk, M. A., Overeynder, J. C., & Janicki, M. P. (Eds.). (1995). Uncertain future—Aging and cerebral palsy: Clinical concerns. Willner, L., & Dunning, D. (1993). Ageing with cerebral palsy. London