I try to represent the diversity of individuals with dementia in my blog, but there’s a group that I’ve not discussed until this point…individuals with Down syndrome.

As you may know, individuals with Down syndrome are living longer than they have in the past. Our society provides more services to assist them in living independent and meaningful lives, and the stigma of having Down syndrome has decreased–although I’d argue it is still far too present.

Now that people are living longer, we know that they have an increased risk of Alzheimer’s. According to the Down Syndrome Society, about 30% of people with Down syndrome will have Alzheimer’s in their 50’s, and more than 50% will have Alzheimer’s in their 60’s. These numbers are a bit of an estimate…many people with Down syndrome never get a workup and actual diagnosis. Additionally, our standard dementia assessments may not always be appropriate for those with Down syndrome, and symptoms may manifest differently.

We know that people with Down syndrome typically have plaques and tangles in their brains by their 40’s even if they are not showing Alzheimer’s symptoms, and that the prevalence of Alzheimer’s is 3-5 times higher in those who have Down syndrome compared to the rest of the population.

Memory loss may be noticeable in the early stages of Alzheimer’s for someone with Down syndrome, but from my experiences families are more likely to notice symptoms like loss of enthusiasm, decreased sociability, agitation, sleep issues, and changes in personality early in the disease process.

The generation of individuals with Down syndrome that is currently hitting late middle age and early old age is the first generation that has primarily lived with family rather than been institutionalized. This is significant because it means that many rely on parents–often mothers–for assistance in their daily lives.

Many of these parents assumed that they would outlive their children, but the sharp increase in life expectancy has created a reality in which many individuals with Down syndrome are left to grieve their parents and then adjust to significant changes in living situation.

Many years ago, I worked as a sacker as a grocery story. I was never promoted to cashier because the assistant manager thought I wasn’t bright enough to handle money…and, yes, he actually told me that. On my evaluation, he also pointed out that someone complained to him that I had sacked their tampons with their grapes–which I guess was frowned upon.

As you might have guessed, I wasn’t exactly fond of that assistant manager, and I wasn’t always fond of the job in general. However, my saving grace was a co-worker named Louie who also sacked groceries. Although apparently customers did complain about my service, no one ever complained about Louie.

He was the most delightfully positive and efficient worker anyone could ever want. Every time I passed him during his shift, he’d give me a giant smile and high five. Louie, who happened be in his early 50s and had Down syndrome, was dropped off by his mom before his shift. While I trudged in dreading another day of being complained to by difficult customers, Louie would kiss his mom goodbye and practically (and sometimes literally) skip into work. Maybe I’m overestimating out of jealousy, but I swear he was employee of the month just about every other month.

I didn’t work at the grocery story for long, but I kept tabs on Louie after I quit. One day, I happened to be browsing through the newspaper when I saw an obituary for his mother. I was almost sick to my stomach thinking about what this might mean for Louie.

I knew he had a sister in another state, but he wanted to continue to work at the grocery story rather than move to a new community. His sister helped him find an appropriate group home to move to so he wouldn’t have to give up his job. He learned to take the bus to the grocery store.

During this time, Louie started being less enthusiastic about his job. He wasn’t as social as he had been, and he was at times uncharacteristically stubborn and uncooperative. He started to struggle with attentiveness to tasks. Once in a while, he would walk off in the middle of his shift and a coworker would have to chase him down.

Everyone figured he was struggling with the loss of his mom, but soon his sister was called by the group home due to his anxiety, sleep issues, and seizures. Eventually, he was diagnosed with Alzheimer’s. The group home told Louie’s sister that he’d need to find another place to live.

He ended up in a nursing home. The transition was difficult. Among other issues, he just didn’t fit in with the other residents. I heard his sister moved him to a nursing home closer to her home in another state…and then I lost track of Louie.

When I worked with Louie at the grocery story, I didn’t know I’d be a gerontologist or work in the area of dementia care. I just knew that Louie was a really awesome guy who happened to have Down syndrome. And I knew that losing his mother, who he had relied on his entire life, was tough on him. When I heard he had Alzheimer’s, I was surprised. It hadn’t even occurred to me that people with Down syndrome could have Alzheimer’s…much less that the disease was common in those with Down syndrome.

After he could no longer work at the grocery store and needed increased care, it just seemed to me that there was no place that Louie belonged. His Alzheimer’s meant that he needed more care than was available at a group home, and his young age and Down syndrome meant that he didn’t fit in at the nursing home.

That was more than twenty years ago.

But last year I spoke at a caregiving conference when an older woman approached me about her son who was in his 50’s with both Down syndrome and Alzheimer’s. And she said the exact same thing.

“It just feels like he doesn’t really belong anywhere,” she told me. “And I’m too old to take care of him.”

Over the last six months, I’ve been asked to do dementia education for three different agencies that serve individuals with intellectual disabilities. I’ve turned each one down because I didn’t feel like I had the expertise to address the unique needs of people with both Down syndrome and Alzheimer’s. When I was asked to suggest someone else to provide education, I was at a loss.

This is a population that we are struggling to serve.

People who have knowledge of dementia (like me) generally don’t have knowledge of intellectual disabilities, and people who have knowledge of intellectual disabilities generally don’t have knowledge of dementia. People with Down syndrome are often not a good fit for the services we suggest when someone is diagnosed with Alzheimer’s. And people with Down syndrome who now have Alzheimer’s may no longer be able to use the community supports that they have relied on in the past.

If we are going to do better at serving this population, we need to start talking about them.