People with intellectual and developmental disabilities (IDD) are living longer and fuller lives. As they grow older, they may experience many of the same age-related health conditions as everyone else, including dementia.
Dementia is not simply occasional forgetfulness. It involves changes in memory, thinking, communication, behavior, or everyday abilities that interfere with a person’s usual life. Adults with Down Syndrome have a particularly increased risk of Alzheimer’s disease as they age, although not every adult with Down syndrome will develop dementia.
Look for a change from the person’s usual abilities
Dementia can be difficult to recognize in someone who already has an intellectual disability. A standard memory test may not show the whole picture. The most important question is: Is this person functioning differently from the way they usually do?
Possible warning signs include:
- Needing more help with familiar daily activities
- Losing skills the person previously used
- Becoming less interested in favorite people, places, or activities
- Changes in communication, mood, personality, or behavior
- New confusion or difficulty following familiar routines
- Changes in walking, balance, sleep, or continence
- New seizures or a change in an established seizure pattern
Not every change is dementia.
A change in function should never be dismissed as “just the disability,” “just behavior,” or “just getting older.” Pain, infection, depression, medication side effects, thyroid disease, hearing or vision loss, sleep apnea, seizures, and other treatable conditions can sometimes look like dementia. A thorough medical evaluation is essential.
What can families and caregivers do?
Families often notice the first meaningful changes. Write down when the changes began, what has been lost or altered, and whether they are becoming more noticeable. Bring this information, along with an updated medication list and medical history, to the healthcare visit.
It is helpful to establish a description of the person’s usual abilities before concerns arise. The National Task Group Early Detection Screen for Dementia, known as the NTG-EDSD, can help families and support staff record a person’s usual function and track changes over time. It is an information-gathering and screening tool, not a test that diagnoses dementia, and it should be shared with a knowledgeable healthcare professional.
Recognizing changes early can uncover treatable health problems, support a more accurate diagnosis, and help families plan the care and assistance the person may need. Throughout the process, the adult with IDD should remain at the center of conversations and decisions, with communication and support adapted the person’s needs.
References and Resources:
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/down-syndrome
https://www.the-ntg.org/ntg-edsd
GLOBAL Down Syndrome Foundation: Medical Care Guidelines for Adults with Down Syndrome
Author: Seth M. Keller, MD, FAAN
Dr. Seth M. Keller is a board-certified neurologist and Fulbright Specialist with Neurology Associates of South Jersey specializing in neurologic, aging, and dementia care for adults with intellectual and developmental disabilities (IDD). He is internationally recognized for advancing inclusive health through medical education, workforce training, and interdisciplinary collaboration. Dr. Keller is Past President of the American Academy of Developmental Medicine and Dentistry, Co-President of the National Task Group on Intellectual Disabilities and Dementia Practices, and founder of the Adult IDD Section of the American Academy of Neurology. He works globally with universities and health systems to strengthen IDD curriculum development, dementia care models, and sustainable training initiatives.