In his younger days, Craig Cambeis was a competitive swimmer, equestrian, Special Olympics gold-medal winner, and avid New Jersey Devil’s hockey fan. At 59 years old, Cambeis now lives with dementia and no longer shows interest in these previously-beloved pastimes.
Adele Barlow is both sister and caregiver to Cambeis, who has Down syndrome, and is struggling to communicate with her brother as his dementia progresses. While nearly 70% of Americans turning 65 will require long-term care at some point, this concerning turn for Cambeis came earlier than 65. According to Barlow, Cambeis first starting showing signs of dementia about one-and-a-half to two years ago, when he began to have trouble talking and completing self-care tasks.
Before that time, Cambeis easily followed his daily routine, ate meals on his own, and changed channels on the television. Now, Barlow says that she dresses him, brushes his teeth, and shaves him. As he started having trouble with these actions, Cambeis also lost the ability to remember the names of Barlow and other family members.
According to the National Down Syndrome Society, estimates show that Alzheimer’s disease, a common form of dementia, affects about 30% of adults with Down syndrome in their 50s and nearly 50% in their 60s. This high percentage isn’t a total shock to genetic researchers, as there is a known connection between Alzheimer’s and Down syndrome.
A person who has Down syndrome has an extra copy of chromosome 21. This same chromosome also carries a gene that creates one of the key proteins involved in Alzheimer’s. By having three of these chromosomes instead of two, people with Down syndrome produce more of these proteins, resulting in a higher chance of developing Alzheimer’s.
Nurse practitioner Leone Murphy, and mother to a 45-year-old daughter with Down syndrome, says that this connection is gaining more attention because the first generation of children with Down syndrome to live at home — rather than at potentially harmful developmental centers — have grown up and are living longer than those with Down syndrome did in the past. While the population of people with Down Syndrome has decreased by 30% because of prenatal screening, the life expectancy of this population has drastically increased. In the mid-1960s, an individual born with Down syndrome had a life expectancy of about 21 years. According to the National Institute of Health, that number has now tripled.
As Murphy, Barlow, and others are facing the relatively unknown world of caring for aging loved ones with Down syndrome, they are looking to each other for support. Murphy co-founded the first statewide support group for caretakers of those with Down syndrome and dementia in New Jersey. Unlike the 3 million patients who can visit urgent care centers each week for common injuries like colds and ankle sprains, there are few doctors specializing in the care of middle-aged adults with Down syndrome.
Groups such as Murphy’s are filling in those gaps left by medical professionals as they share what early signs of dementia look like and how best to care for their loved ones. Until the medical field catches up, Barlow says that she will keep trying to make every memory with her brother count, even if he can’t hold on to them all.