Since each family is unique, there is no single answer to this question. There are, however, five things that you can do immediately that will aid your peace of mind as you face the beginning of this new situation.
New Parent Guide
Careful evaluation of a person with Down syndrome who has a decline in function has broader public health implications. Many of the adults we have seen for a decline in function have either previously been given the diagnosis of Alzheimer's disease or there was a strong suspicion by the family or caregivers that the person had Alzheimer's disease. In discussing the concern with the family or caregiver, it is clear that many people believe that all persons with Down syndrome will develop Alzheimer's disease. Our experience and the research of others would suggest that not all persons with Down syndrome will develop clinical dementia stemming from Alzheimer's disease. The exact prevalence of Alzheimer's disease in persons with Down syndrome is still being investigated.
A review of diagnosed disorders from the current clinical sample of the Adult Down Syndrome Center supports previous case reports showing reversible disorders, such as depression, to be a predominant cause of loss of functioning in this population. Of the 443 adults with Down syndrome seen at the Center, 148 (33%) have presented with a decline in function.
When a patient declines in function, a thorough evaluation is necessary to look for reversible causes or, if no reversible cause is found, to confirm that the decline is consistent with Alzheimer's disease.
In the metropolitan Chicago area, the NADS has been providing advocacy services for persons with Down syndrome since 1961. This voluntary association was started by parents of young children and, therefore, for a number of years their focus was on children and adolescents with Down syndrome. However, as their sons and daughters grew beyond childhood, new concerns became evident.
When an adult with Down syndrome is diagnosed with Alzheimer's disease, we focus on "the four S's": Safety, Stability (of the environment), Social (emotional) issues, and Symptoms. As the adult with Down syndrome experiences greater decline, family or caregivers will often have difficulty maintaining a safe environment. Falling because of gait apraxia, wandering from home, and touching or using objects in the home that can be harmful if used inappropriately (e.g., the stove) can all be problems that the family or caregiver cannot prevent. In addition, when the adults become bed-bound, frequent turning or changing the position to prevent bedsores is necessary and may be more than the family can provide. Safety is frequently the concern that requires a change in living arrangements and, if no specialty care programs are available, may require admission to a nursing facility.