Question
What are the early signs of dementia in adults with intellectual and developmental disabilities (IDD) as observed by family caregivers?
Answer
In a qualitative study of family caregivers supporting adults with IDD, five early indicators emerged that signaled the possible onset of dementia. These signs, while not clinical diagnoses on their own, provided vital context-sensitive insights grounded in daily lived experience. The first category, behavioral changes, involved new or intensified behaviors such as aggression or compulsivity that were inconsistent with the person’s prior baseline. These were often the earliest signs caregivers noticed and interpreted as a significant shift.
The second group, physical changes impacting function, included noticeable declines in mobility, increased fatigue, or difficulties performing routine tasks. These changes disrupted daily rhythms and were often reported before cognitive symptoms were formally recognized. Mood changes—including irritability, sadness, anxiety, or social withdrawal—were also frequently mentioned. These shifts, initially subtle, became more pronounced over time and often accompanied other functional or behavioral changes.
Memory-related concerns, particularly around procedural and short-term memory, formed a fourth category. Caregivers described lapses in task execution and the inability to retain recent information, which was especially concerning when long-established routines were forgotten. Lastly, atypical behaviors, such as dishonesty or stealing—behaviors starkly inconsistent with the individual's lifelong patterns—served as significant red flags. These changes were deeply unsettling for caregivers and often prompted further evaluation.
Collectively, these caregiver observations highlight how dementia may uniquely manifest in adults with IDD, requiring a nuanced and relational understanding that goes beyond standard diagnostic tools. Listening to caregivers’ insights is essential for timely identification and support.
This Ask the Expert is an edited excerpt from the course, Understanding And Supporting Adults With Intellectual And Developmental Disabilities With Cognitive Decline And Regressive Illness, presented by Christina Marsack-Topolewski, PhD, LMSW.
