ZZZ: Sleep Issues in People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. Almost every year, my final post in the #AtoZChallenge is about sleep or “ZZZ”. This year is no different.

Sleep problems can affect anyone, disabled or not. However, sleep disorders, including sleep apnea (sleep-related breathing disorder) and insomnia, are more common among people with intellectual disabilities than among the general population. In fact, one review found that as many as 31% of adults with intellectual disability experienced more than one sleep problem. More severely intellectually disabled individuals, those with certain genetic syndromes and those with comorbid neurodevelopmental disorders such as autism, are at particularly increased risk of having more sleep disturbances.

Sleep problems can cause physical and mental health problems in intellectually disabled people just like in the general population. However, they can also contribute to challenging behavior.

There are many factors associated with sleep problems in intellectually disabled people. For example, those with comorbid autism and/or ADHD are at increased risk of having sleep disturbances. Those with certain genetic syndromes, too, may experience certain sleep disorders. I mentioned sleep apnea already in my post on Down Syndrome. People with Smith-Magenis Syndrome, on the other hand, often experience an inverted circadian rhythm.

Environmental factors also need to be considered. For instance, a care home may not be ideal for people with intellectual disabilities to sleep properly due to for example night staff checking on them frequently. This does not happen here. What happens here rather frequently is the reverse, staff leaving clients to “rest” in a sensory room or their bedroom during the day.

The management of sleep disorders in people with intellectual disabilities is somewhat similar to that in the general population. However, more care should be taken to rule out medical conditions such as epilepsy or sleep apnea as the cause for poor sleep. The only medication which is somewhat effective for sleep issues in intellectually disabled people, is melatonin.

Now it’s 10PM and I’m ready for bed myself, I guess.

Neurocognitive Disorders: Dementia in People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter N post in the #AtoZChallenge. Today, I want to talk about cognitive decline and neurocognitive disorders – dementia in particular – as they relate to people with intellectual disabilities.

People with an intellectual disability are at increased risk of developing dementia at a relatively young age compared to the general population. Particularly Down Syndrome is a significant risk factor for early-onset dementia, especially Alzheimer’s Disease. Autopsies discovered that almost all individuals with Down Syndrome show physiological signs of Alzheimer’s by the age of forty. This, however, does not mean all individuals will actually have the symptoms of dementia.

In people with intellectual disability not due to Down Syndrome, the risk of developing dementia is also increased. Risk factors in this population include epilepsy, head injury, sensory impairments, poor mental or physical health, as well as an increased prevalence of general risk factors such as poor diet and lack of exercise.

With the higher risk of developing dementia for individuals with intellectual disability, it is all the more important that it be recognized early on so that effective support strategies may be implemented. This is especially hard in more severely intellectually disabled people. I mean, I remember a woman with Down Syndrome being assessed for dementia at my previous care home and the staff commented about the screening tool: “Does she know the name of her support coordinator?” The staff snorted here, as the woman couldn’t even speak. It is still important, however, to recognize when even the most severely disabled people might be declining cognitively.

Signs of possible dementia in people with intellectual disability include increased irritability, passivity and withdrawal, no longer wanting to go to daily activities and increased difficulty with activities of daily living such as self-care. However, these can also be signs of other underlying medical or psychosocial issues.

Down Syndrome #AtoZChallenge

Posted on by Astrid

Hi everyone. I am once again late writing my contribution to the #AtoZChallenge, but it’s still Wednesday in my neck of the woods. For my letter D post, I want to talk about Down Syndrome. When I first heard about it, I had many misconceptions about it. I saw it as the standard form of intellectual disability and only knew people with relatively mild intellectual disabilities who had this condition. Let me set the facts straight.

First, there are three different types of Down Syndrome. About 95% of those affected have what most know as classic Down Syndrome, ie. trisomy 21. Another 3% of affected individuals have Down Syndrome due to a translocated extra chromosome 21. This means that their extra chromosome (or part of it) is attached to another chromosome. I remember first learning about translocations in a play about bioethics in high school we had to watch for philosophy. The third type is mosaicism, in which a person has three copies of chromosome 21 in some but not all of their cells. These people might have milder symptoms than those with the other two types.

That being said, according to the American CDC, most people with Down Syndrome will have a mild to moderate intellectual disability. This may be so, but in reality, Down Syndrome individuals span the full gamut of intelligence, from near-average to profoundly intellectually disabled. It is impossible to predict the severity of an individual’s disability at birth (let alone prenatally, should the expecting mother decide to test for trisomy 21). However, like I said yesterday, even if someone turns out profoundly disabled, it doesn’t mean they can’t express themselves.

At my old care home, there were four clients with Down Syndrome, three of them nonspeaking and thought to be profoundly intellectually disabled. At least one of them had additional health problems common in Down Syndrome. These health problems include congenital heart defects (which this woman had), hearing loss and ear infections, an increased risk of obesity, and obstructive sleep apnea.

The life expectancy of people with Down Syndrome has increased significantly over the years. Currently, many people with the condition live to age sixty. The client with Down Syndrome at my old care home who can speak, will be fifty in August. He does have some issues, so please all send out positive vibes that he’ll still be well enough, as I’ve more or less promised him and the staff that I’ll visit for his birthday.