Carol Erzen knows how difficult it is to diagnose and care for someone with dementia. Her mother was diagnosed with Lewy body dementia, and, for her family, it took time to figure out what was happening.
“With both Alzheimer’s and dementia, it’s not like there is a blood test or a thermometer test that you can do to tell you, ‘Oh, this is clearly what’s happening,’ ” said Erzen, staff development executive for Merakey Allegheny Valley School in Pittsburgh, which provides homes and services to those with intellectual and developmental disabilities.
“It’s a series of things that have to be looked at,” she said, “and a lot of it is very subtle.”
As the population she cares for at Merakey ages, she has realized those symptoms are even more subtle among those with special needs.
That population is living longer than ever before, thanks in part to better access to health care and medical advances. But with longer life spans come other age-associated problems and conditions, including Alzheimer’s disease and dementia.
Scientists have actually shown a genetic link between conditions like Down syndrome and Alzheimer’s. Those with Down syndrome have a full or partial extra copy of chromosome 21, the gene that is also produced in excess in Alzheimer’s disease.
The disease tends to show up decades earlier in those with Down syndrome — around age 50 or 60. That’s one reason caregivers don’t identify the disease in the early stages, when adjustments can be made to improve quality of life.
Those with disabilities also tend to decline much faster. The average amount of time between diagnosis and death is about two to seven years for those with Down syndrome, whereas someone in the general population can live with the disease for decades.
Some of that is likely because of the delayed diagnosis. Those with Down syndrome or other intellectual or developmental disabilities may have additional behaviors that mask the symptoms of dementia, or, in some cases, they are taking psychotropic drugs that have behavioral side effects.
“Sometimes that mirrors some issues of dementia,” said Melissa DiSipio, director of Philadelphia Coordinated Care. “Or it might cause dementia-related symptoms long term. So we have to look at those types of issues as well.”
DiSipio has organized trainings with Erzen and other experts in the field to give caregivers tools to deal with an aging population.
“It’s really important that we train them on noticing and identifying the early signs of dementia and Alzheimer’s so that they can better care for and treat people with intellectual disabilities along with dementia and Alzheimer’s,” she said.
At a training this week, 50 people packed into a small conference room in Norristown to learn what those signs are and how they can adapt their environments to make life more manageable for the people they serve.
DiSipio and her staff offered a checklist of behaviors, with a way to indicate whether behavior has changed from the person’s baseline — whatever that may be. That’s one of the best ways to identify some of those early, subtle changes, she said.
That can still be complicated for caregivers, who often deal with people with varying psychiatric histories.
“It’s a very mixed bag of things that you’re trying to decipher,” said Michelle Walsky, program supervisor at Brian’s House, which provides housing for adults with intellectual and physical disabilities. She finds herself asking, “‘Is that the dementia working on her today, or is that a behavior that resonates from the past?’”
She said trainings such as the one DiSipio and Erzen run are really important for expanding the options in a caregiver’s toolbox.
“We need that education to be out there so that we can help take care of these individuals to have them live a longer, more prosperous life,” she said.
Erzen said one of the most important changes a caregiver can make is modifying the living space — choosing a carpet without too much pattern, which could cause confusion, or lighting that doesn’t cast strange shadows, which could be scary.
Even a too-shiny floor covering could be a problem.
“If it’s too shiny it could look like water and someone could be fearful of that,” Erzen said.
The training this week filled up a month before the scheduled date, and people were eager for more. Erzen said that’s a sign of how important it is to train people who care for an aging special-needs population.
“We could probably do 10 of these, and still not reach everyone that we need to,” Erzen said. “But the more that we can get people to understand, the more we can direct them to the right resources and give them the supports, it’s just going to be better for everyone.”