Gathering Resources

I am employed by a company which provides good benefits. One of the benefits my employer provides is access to a hosptial affiliated employee assistance program (EAP). The EAP provides support for all sorts of life issues that are not just medical in nature. For example, when I first moved here and took this job, the EAP was helpful in securing daycare for my child.

Last week, I called the EAP line and asked for assistance finding information on dementia in the intellectually disabled. I specified that I was not looking for dementia in patients with Down's Syndrome because Lyn doesn't have Down's. Much of the information I am finding easily accessible on-line about dementia in the intellectually disabled is focused on those with Down's because they are at a much higher risk for it. The EAP counselor has started sending me articles and links to information. I've started reading through the material and plan to start sharing it here.

One of the things that is jumping out at me is that Lyn's intellectual disability does not put her at higher risk for early on-set dementia. Her risk of early on-set dementia is apparently the same as the rest of us at only 3% for 40 year olds. For patients with Down's Syndrome, the risk is closer to 25% for 40 year olds.

In 2006, Matthew Janicki, PhD, stated in a presentation that the challenges to assessment include a lack of knowledge of dementia assessment protocols, a lack of assessment services and a lack of familiarity of dementia among medical practitioners. I hope the 5 years since his presentation have reduced these challenges.

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