Guidelines for Structuring Community Care and Supports for People With Intellectual Disabilities Affected by Dementia
Jokinen, N., Janicki, M. P., et al. (2013).
Albany (NY): National Task Group on Intellectual Disabilities and Dementia Practices; Center for Excellence in Aging & Community Wellness, 1-45.
This guideline provides recommendations for community care and support for individuals with dementia and intellectual disabilities. The recommendations cover a wide period of services from early signs of dementia to end-of-life care. While the guidelines are intended for use by organizations and families, recommendations within the scope of speech-language pathology are highlighted.
National Task Group on Intellectual Disabilities and Dementia Practices
Communication devices, if applicable, should be evaluated to ensure that the equipment remains appropriate and is being used, and to consider if other devices should be implemented.
"Use a detection/screening tool on a regular basis to capture early warning signs that may or may not indicate dementia" is recommended along with "continued surveillance and periodic assessments to determine the extent of change and progressive dysfunction as well as the possible development of comorbid conditions" (pp. 9-19).
"Have a person familiar with the adult with an intellectual disability and his or her history and communication method always accompany the adult to the assessment appointment" (p. 9).
"It is recommended that caregivers employ an early detection screening tool which can help to document the presence of certain behaviors or dysfunctions, as well as noted changes which may signal [mild cognitive impairment] MCI or dementia, and where the data can be useful for starting that 'critical conversation' with a physician or other clinician" (p. 6).
<p>Healthcare professionals working with adults with dementia and intellectual disabilities and/or their caregivers should:</p><ul> <li>modify/remediate environmental challenges to help individuals maintain community living; </li> <li>establish daily routines based on individual needs and preferences; and </li> <li>educate family and caregivers on communication strategies (e.g., using simple and direct language, understanding changing attention spans and need for additional information, avoiding talking for the person or filling in his/her words).</li></ul>
