Introduction to Dementia and Aging with IDD (6 Minutes)

By: Center for Developmental Disabilities Evaluation and Research

Hello and welcome to the first module in our series about dementia and aging with intellectual and developmental disabilities. Today's topic is presented by Dr. Julie Moran. We will also hear a caregiver story. Dr.

Moran is a geriatrician and specialist with aging and intellectual and developmental disabilities. She's a consultant to Tewksbury Hospital as well as the Massachusetts Department of Developmental Services. Dr. Moran is also a Clinical Instructor of Medicine at Harvard Medical School. Today's topic is an Introduction to Dementia and Aging with Intellectual and Developmental Disabilities.

One of the leading concerns I've seen for people who come to see me in consultation is questions related to memory changes as one grows older. Dementia and an assessment for dementia is, in some ways, complicated because dementia is a diagnosis of both inclusion and exclusion. You need to talk yourself into the fact that there might be some true memory changes that are happening and talk yourself out of many other coexisting conditions that could also lead to changes that look like memory loss or confusion. The Alzheimer's comes straight at you.

And you don't know a whole lot about it. And, you know, I thought I knew everything and I knew nothing. To start out this topic, we'll talk first about what is dementia and as a reminder just the key components that comprise a dementia diagnosis. I don't mean to over complicate the picture with this slide but just to remind listeners that there is criteria, specific criteria to make a diagnosis of dementia.

Introduction to Dementia and Aging with IDD (6 Minutes)

These are -- what you're seeing here is what's called the DSM-5 and DSM-IV criteria for dementia. And these general diagnostic principles is what's applied to people with an intellectual disability as well. There are different ways of making assessments to help lead to this conclusion, but in the end the diagnosis still goes back to these general criteria to help gather evidence and make a decision. So the key things to look for is any type of decline from a previous level of performance. And this occurs in either one or more cognitive domains including learning and memory, language, planning functioning, complex attention, etcetera. The important thing there is that it doesn't have to be just memory specific but other domains of memory or attention or learning that might be observed and that the deficits are severe enough that they interfere with daily activity and that they don't occur exclusively in the context of a delirium meaning if somebody becomes confused when their acutely hospitalized because they're critically ill, that is not because they have dementia. They are acutely ill and they have some confusion related to that.

So really this judgment is made in the setting of somebody's everyday life whether or not they're seeing some deficits that are occurring when they're healthy and well and otherwise performing a regular day and that the deficits are not better explained by other mental health disorders meaning that there is no evidence that there is other coexisting depression or other forms of mental illness. We will talk in general about intellectual disability and dementia, but I will circle back to talk about Down syndrome specifically because this is a category that is at higher risk of developing dementia and needs just a little bit extra explanation about why that genetic link is there. So going back to some previous teaching about the presence of three copies of chromosome 21 for adults with trisomy 21 or Down syndrome, this chromosome also codes for a protein that is over-expressed in Alzheimer's disease. And so that is why, in very general terms, there is a specific and genetic risk that is associated with people with Down syndrome and Alzheimer's disease. The main teaching about this, though, as I've emphasized in other portions of this talk, is that Alzheimer's disease in adults with Down syndrome is not inevitable. When we look at data that's been collected within, say, the past 20 years, prevalence or the rate in which adults expressed dementia does not approach 100%. General estimates still put it at about 30% for people who are in their 50s and upwards of 50% and then beyond for people who are in their 60s.

So the important thing there is to be sure you're looking carefully for what else might be present because you might only be right about 50% of the time if you presume that your individual that you're seeing with changes is related to memory itself. So, again, Alzheimer's disease is not inevitable for individuals with Down syndrome. Thank you Dr. Moran and thank you for listening. This training module is one in a series of webinars about general aging with intellectual and developmental disabilities. Additional webinars appear on your screen. For additional resources on aging with intellectual and developmental disabilities and to access the webinars that were previously recorded, please visit either the Massachusetts Department of Developmental Services or the Center for Developmental Disabilities Evaluation and Research websites on aging with IDD. Thank you for listening.

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