In response to a request by the local parent group, a clinic was developed to provide for the medical and psychosocial needs of adults with Down syndrome. One of the concerns of the parents was that their sons and daughters were not receiving an adequate evaluation when they had a decline in function and were being given a diagnosis of Alzheimer's disease based on a presumption that all persons with Down syndrome develop Alzheimer's disease. The thorough evaluation that each patient receives is described. The majority of the adults seen show no decline in function. Of those that showed a decline in function, a small percentage were diagnosed with Alzheimer's disease, but most of those with a decline had a potentially reversible problem and, with treatment, most returned to their premorbid level of function.
Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of individuals with Down syndrome. As many as 80 percent of adults with this genetic condition live to age 55 and beyond. This new longevity needs to be incorporated into lifetime planning when a child is born. The law assumes that people over the age of 18 are competent to manage their own affairs regardless of disabilities, and parents are no longer considered legal guardians after this point. If protective provisions are not in place, the courts will make important decisions. Physical, social, financial and legal issues must be considered, as well as siblings and service agencies. A well-made life plan is essential for long-term quality life for your loved one with Down syndrome.
By: Dorothy Robison, Marty Wyngaarden Krauss, Marsha Mailick Seltzer
Parents of children with Down syndrome commonly ask about the future: "What will life be like for my child when he is grown? Will it be possible for my child to live independently or semi-independently? How will I, as a parent, make the best decisions regarding how to support my child as an adult? What will my life be like?" In the early years, as their child participates in early intervention programs, parents begin to acquire a knowledge base about their child's needs and the services required to enhance their child's development.
As the child makes the transition into the public education system and parents begin to see their child in relation to other children without disabilities, they begin to form hope and awareness of the many possibilities that await adults with Down syndrome. They realize that much depends on the blending of public services and private dreams. They also realize that, regardless of which public services are available, the role of the family (and, especially, the efforts of the parents) remains paramount in shaping the possibilities of the child with Down syndrome. Parenting never ends; it is a lifelong responsibility that can be approached with joy, trepidation, or worry.
Human sexuality encompasses an individual's self-esteem, interpersonal relationships and social experiences relating to dating, marriage and the physical aspects of sex. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, helps in engendering healthy sexuality, preventing unwanted pregnancy and diseases and in alleviating other problems related to sexual function.