Early on-set dementia and the intellectually disabled?
June 20, 2011 10:17 AM Subscribe
Sister with Sundowners and growing signs of dementia. What to do? Any experience with the intellectually disabled and early onset dementia? Any experience with early onset dementia at all?
posted by onhazier to health & fitness (3 answers total) 1 user marked this as a favorite
My sister is 40 years old. The left frontal and temporal lobes of her brain have been damaged since birth. She functions at the level of a 9 year old. Her assessment last year indicated she was functioning at 9 years 7 months. My sister was diagnosed with Sundowner's syndrome 14 years ago. This has mostly been managed by maintaining a stable routine and environment for her. In the past two months, her support team has noticed significant loss of skills. For example, she no longer knows how to put soap in the washing machine or how to get it started. She no longer knows how to turn the car radio to her favorite (preset) station. On Friday, she screamed for help from the bathroom because she didn't know what was happening when her period started and the blood scared her. She's been menstruating for over 25 years and didn't have confusion or fear last month when it started.
Mom, her primary care giver, is trying to get her in to see her physician today. Given that this is just a first step, I'm sure, what types of appointments will need to be scheduled for her to receive the care she needs? What resources are available to support or provide guidance to my Mom? What, at a high level, are we looking at for my sister's care?
Mom is in her early 60's and is VERY capable and a good advocate for my sister. They live in New Mexico.