I didn’t talk a lot of about the dementia in Parenting Your Complex Child because it is not our main focus in the book. Since some have asked but Billy Ray’s high degree of medical issues and behavioral changes, it seems important to discuss it now.
The first time I heard of a possible connection between Down syndrome and Alzheimer’s, Billy Ray was 9 or 10 years old. It was a scary possibility but he was fairly high functioning and a happy little boy. A year or so later he handled the death of his adoptive father better than I would have ever expected.
As I have shared here and in my book he probably experienced the dual diagnosis of Down Syndrome and Autism in his early years. I was not as familiar with Autism in those days and related much of the functioning and behavior to Down Syndrome. I didn’t report it to the developmental pediatrician or we might have gotten the dual diagnosis much earlier. However, after he experienced a series of severe seizures (believed to be a medication side effect) at 14 years old more severe Autistic like symptoms manifested within the next few months.
It is possible that those symptoms also masked symptoms of dementia. Our first awareness of dementia were pretty severe to have been the start. His adoptive father died when he was 11-1/2 years old. We met his stepfather about a year and a half later. At 16 years old, he totally transferred all memory of his deceased father to his stepfather. He called Larry by his deceased Dad’s name and talked to him about working on the highway (his Dad had been a highway construction inspector) even he knew very well where Larry worked and had visited his job. Other functioning deteriorated.
It has been a bumpy process. He lost some skills but we have been able to restore at times. About six months after the period where he didn’t know his stepfather, his memory just improved without notice and his relationship with Larry went back to where it had been initially. There are times his memory is sharp as a tack and other times he can’t remember that he has had lunch or dinner and wants to eat again.
In the beginning medical providers didn’t want to acknowledge the possibility of Down’s related dementia because of his young age. His pediatrician said that it was not unheard of that young but very rare. Various specialists evaluated him. The MRI and CT scan did not show deterioration in his brain. We were told sometimes it could not be confirmed except by autopsy and symptoms increasing. Also that the seizures he experienced at 14 years old might have brought it on earlier.
In the beginning there wasn’t much available on the topic. There is much more available now. Basically, the only consistent thing I read in the various literature I found was that unlike Alzheimer’s in person without Down Syndrome, there are immune system issues and increased medical problems. It is not the “Long Goodbye” Nancy Regan describes with her husband, President Ronald Regan. In the beginning, the literature usually suggested ten years from onset. In the past few days I saw one article that suggests an average survival of 8.2 years from first onset and another that said 3-5 years.
Billy Ray is 23 years old. As stated above the first awareness that we were dealing with dementia may have been masked by Autism because it was pretty advanced. He was 16 years old. The dementia continues bumpy but the medical issues increase consistently. His behavior seems more connected with his medical issues than it used to be.
Where we go from here is not a surety. However, the adapting to his needs and documentation prepared for the professionals involved has become even more important.
Until next time,
Peggy Lou Morgan
Parenting Your Complex Child Yahoo Group