Those with Down Syndrome or other IDDs may lack the ability to advocate for themselves regarding changes to their mental status and intellectual capabilities. They need their caregivers and family members to advocate for their needs. Otherwise, they can be easily dismissed and not receive the proper care that they need.

How Advocacy Impacts Diagnosing Dementia in Individuals with Down Syndrome and other IDDs

- Especially difficult in the early stage of  the disease
- Difficulty administering tests
  - Tests like the Mini Mental State Examination (MMSE)
    - Can't be used due to the floor effect
- Only professionals can administer tests
- Carers have the responsibility in detecting changes in behavior


Cedarville University

Dementia is common in adults with Down Syndrome, but it is difficult to receive this diagnosis. It may be manifested in different ways depending on the individual. 

Down Syndrome and Dementia

Deb, S., Hare, M. and Prior, L. (2007), Symptoms of dementia among adults with Down's syndrome: a qualitative study. Journal of Intellectual Disability Research, 51: 726-739. https://doi.org/10.1111/j.1365-2788.2007.00956.x

Symptoms of dementia among adults with Down's syndrome: a qualitative study

- Mental deterioration
- Slowing
- Confusion
- Reduced output of speech
- Deterioration in gait
- Personality Change

Common Early Symptoms of Dementia in Individuals with Down Syndrome

Eady, N., Sheehan, R., Rantell, K., Sinai, A., Bernal, J., Bohnen, I., . . . Strydom, A. (2018). Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: Clinical cohort study. The British Journal of Psychiatry, 212(3), 155-160. doi:10.1192/bjp.2017.21

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