Supporting People as the Age

Kim Tavner and Henry Teal

As people with intellectual and developmental disabilities (IDD) approach middle and later stages of life, they face a much higher chance of developing dementia compared to the general population. Several factors contribute to this. For everyone with IDD, clinical dementia risk increases with age, though not all develop symptoms of dementia. For people with Down syndrome, there is a direct genetic link on the 21st chromosome which causes the amyloid precursor protein gene to produce too much protein. This results in a buildup of amyloid production and early-onset Alzheimer’s disease pathology. By age 40, nearly all adults with Down syndrome start to experience changes in their nervous system consistent with Alzheimer’s disease. Other factors for individuals with IDD not related to Down syndrome also increase risk for early onset dementia. These factors include having less mental capacity or flexibility to cope, increased severity of intellectual disability, and relatively fewer years in school or formal learning. People with IDD are also more likely to have other risk factors such as hypertension, depression, stroke, and traumatic brain injury.

Diagnosing and managing dementia in people with IDD can be more challenging as well. People with IDD can have difficulty learning and retaining new skills for coping and adapting to dementia symptoms. They often have other medical and psychiatric conditions that make it difficult to recognize changes that may be related to dementia. Many people with IDD also have frequent changes in direct support professionals (DSPs) or caregivers over the lifespan. These circumstances help explain why it is more difficult for DSPs and physicians alike to identify signs of dementia in people with IDD.

Further, the definition of dementia is evolving. Dementia symptoms can very look different from person to person. Fortunately, there are several resources that can help clinicians and caregivers to recognize and cope with dementia.

Defining Baseline

As a physician looking to identify and treat dementia, one of the most valuable resources I have is a caretaker or DSP who knows the patient’s history. The caretaker or DSP can tell when something has changed. People with IDD already have challenges with memory, thinking, and doing things, so we must first define their baseline. This means we identify what has been typical for that person in the past. DSPs often know the person’s baseline well. I ask DSPs whether they noticed any changes in functioning, repetitions in conversation, forgetting someone’s name or new behaviors like paranoia, fearfulness, and hallucinations. This feedback is really important. Further, an increase in the level of care required for someone’s day-to-day activities may also signal the onset of dementia. Providing information on that increase can be very helpful.

If you notice any of these signs, please contact the person’s primary care physician. Many primary care providers are uncomfortable diagnosing dementia, especially in patients with IDD. Ideally, a multidisciplinary team is best suited to provide effective care. The primary care physician may refer the person to a multidisciplinary team lead by a specialist in neurology, geriatrics, or psychiatry. The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) is a common diagnostic tool. The DSQIID helps establish a baseline and prevent diagnostic overshadowing. Diagnostic overshadowing means confusing new symptoms with pre-existing conditions. This can delay a person getting the care needed for the issue that causes the new symptoms. If there is no one present or available who has known the person for a long time, then a questionnaire like the DSQIID can be a helpful substitute. If you are retiring or unable to support the person with IDD throughout the aging process, please complete a short questionnaire with the person and pass it along to their DSPs. This is a great way to help someone meet the challenge of aging with IDD.

As a physician looking to identify and treat dementia, one of the most valuable resources I have is a caretaker or DSP who knows the patient’s history.

The CHIME Recovery Model

Dementia treatment is a process for the patient, the care partner, and the clinicians involved, and IDD can make treatment complex. When treating dementia patients, I help care partners adjust expectations and adapt to changing levels of care. While there are few well-studied models of dementia care for people with IDD, I have used the CHIME recovery model to create person-centered goals in facing dementia. CHIME encourages maintaining:

• Connectedness
• Hope and optimism about the future
• Identity
• Meaning in life
• Empowerment

Here is an example using CHIME:

Max is a 48 year old man with IDD from birth. He previously lived in a group setting, and worked mornings with a local shop owner. He loved greeting customers as they came into the shop and helping the owner with daily tasks of the shop. He began becoming confused doing some of his tasks which involved several steps. He would ask questions repeatedly and not be able to remember the answers long enough to complete tasks. He had to move from his group home after leaving the home during the night on more than one occasion, dressed for work and confused as to why his ride was not present to take him. His family took him to a memory center where he was diagnosed with Alzheimer’s disease. They moved him to a memory care center where he was crying often and asking to “go home.” Here are some ways that the staff at the memory center might help him adjust to the change and the loss of previous independence.

Connectedness: The staff at the memory center paired him with another patient who was outgoing and enjoyed introducing him to other residents. All residents wore nametags and Max made his own. He wore it so that residents and staff could remember his nickname and encourage him to join activities. They facilitated frequent FaceTime visits with his family as well.

Hope was promoted when staff worked with him to set personalized goals, such as learning how to find his own room and celebrating the achievement with him.

Identity was maintained by helping him create a life story book. The life story book had pictures that his family had of him at work and at their homes celebrating holidays. His sister even went to the store where he worked. She took pictures of some the customers who always enjoyed talking with him when they shopped.

Meaning was supported by engaging him in activities that reflected his own interests, such as music that he loved and working with him to maintain his spiritual practices. He was also given the job of being the greeter when residents had planned activities.

Empowerment was promoted by offering him choices in day-to-day life to the extent possible. Staff took notes on things that they noticed were strengths for him. They made a personalized care plan which was flexible, but supported his ability to maintain those strengths.

This model can help you set specific care goals as you explore ways to offer individualized support.

References

Moran, J. A., Rafii, M. S., Keller, S. M., Singh, B. K., Janicki, M. P., American Academy of Developmental Medicine and Dentistry, Rehabilitation Research and Training Center on Aging With Developmental Disabilities, University of Illinois at Chicago, & American Association on Intellectual and Developmental Disabilities (2013). The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clinic Proceedings, 88(8), 831–840. https://doi.org/10.1016/j.mayocp.2013.04.024

Patel, P., Sun, W., Mataruga, A., Fung, K., & Balogh, R. (2025). The incidence and prevalence of dementia among Ontario adults with and without intellectual and developmental disabilities. International Journal of Geriatric Psychiatry, 40(2), e70050. https://doi.org/10.1002/gps.70050

Leamy, M., Bird, V., Le Boutillier, C., Williams, J., & Slade, M. (2011). Conceptual framework for personal recovery in mental health: Systematic review and narrative synthesis. The British Journal of Psychiatry: The Journal of Mental Science, 199(6), 445–452. https://doi.org/10.1192/bjp.bp.110.083733

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