Educate caregivers to recognize early signs
Educate caregivers to recognize and report possible early signs of dementia, such as new onset of forgetfulness, incontinence, loss of personal skills, and changes in sleep patterns, personality and behaviour.328, 329
Strongly Recommended
Empirical Expert
Dementia (major neurocognitive disorder68) is more prevalent among adults with IDD compared with the general population (age of onset 60-65 y), with a statistically significant increased risk in adults with Down syndrome and at an earlier age (50-55 y).326, 327
Investigate for potential reversible causes
When signs of dementia are present, investigate for potential reversible causes including infections, thyroid disorder, cardiovascular disease, hearing and visual impairments, nutritional deficiencies, or medication effects.330
Recommended
Expert
Diagnosis might be missed because changes in emotion, social behaviour, or motivation can be gradual and subtle. A baseline of functioning against which to measure change is needed.326
Refer to a psychologist
Refer individuals who are known to be at risk of dementia to a psychologist for a baseline assessment of cognitive, adaptive, and communicative functioning after age 40 y and at age 30 y for people with Down syndrome.326
Recommended
Expert
Diagnosis might be missed because changes in emotion, social behaviour, or motivation can be gradual and subtle. A baseline of functioning against which to measure change is needed.326
Monitor
Monitor with tools designed for people with IDD and dementia (eg, NTG- Early Detection Screen for Dementia).329, 332, 333
Strongly Recommended
Empirical Expert
Differentiating dementia from depression and delirium can be especially challenging in adults with IDD.331
Differentiate from depression and delirium
Apply the differential diagnosis criteria for dementia and delirium as in the general population using a systematic and sequential approach, such as the HELP framework (see Behaviours that Challenge), to review signs and symptoms of concern.330
Recommended
Expert
Differentiating dementia from depression and delirium can be especially challenging in adults with IDD.331
Consider a trial of antidepressant medications
After addressing any medical findings and precipitating life events, consider the possibility of depression and a trial of an antidepressant medication to resolve symptoms and support the diagnosis of depression.327
Recommended
Expert
Differentiating dementia from depression and delirium can be especially challenging in adults with IDD.331
Refer to appropriate specialist
Refer to the appropriate specialist (eg, IDD mental health team, geriatric service, or neurologist) if it remains uncertain whether symptoms and behaviour are due to emotional disturbance, psychiatric disorder, or dementia.326
Recommended
Expert
Differentiating dementia from depression and delirium can be especially challenging in adults with IDD.331
National Task Group – Early Detection Screen for Dementia
The NTG-EDSD Screening Instrument developed by the American Academy of Developmental Medicine and Dentistry (2013) is a tool that helps identifying early signs and symptoms of dementia in adults with intellectual disabilities.
326. Dodd K, Faculty for People with Intellectual Disabilities of the British Psychological Society Division of Clinical Psychology and the Intellectual Disabilities Faculty of the Royal College of Psychiatrist. Dementia and people with intellectual disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. UK: British Psychological Society; 2015 April.
327. Prasher VP. Practical dementia care for adults with down syndrome or with intellectual disabilities. Nova Science Publishers, Inc; 2014.
328. Herron D. Understanding dementia: People with learning disabilities finding out and raising awareness together. West Midlands, UK: Black Country Partnership NHS; 2014.
329. Sheehan R, Ali A, Hassiotis A. Dementia in intellectual disability. Curr Opin Psychiatry. 2014;27(2):143-8.
330. Alvarez N. Dementia and people with intellectual and developmental disabilities. International Journal of Child Health and Human Development. 2015;8(4):449-69.
332. Jokinen N, Janicki MP, Keller SM, Mccallion P, Force LT. Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities. 2013;10(1):1-24.
333. National Task Group on Intellectual Disabilities and Dementia Practices. NTG – EDSD screening instrument [Website]. Prospect, KY: American Academy of Developmental Medicine and Dentristry. 2013. Accessed 2017 Oct 25.
331. Gangadharan SK, Jesu AJM. Chapter 5: dementia in people with intellectual disability. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, West Sussex ; Hoboken, NJ: John Wiley & Sons Inc.; 2015. p. 63-75.
