What is included in patient education about Alzheimer disease (AD) in Down syndrome (DS)?

Updated: Nov 13, 2019
  • Author: Norberto Alvarez, MD; Chief Editor: Jasvinder Chawla, MD, MBA  more...
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Discuss issues related to diagnosis and prognosis with the family and caregivers early in the course of the disease. In addition, establishing rapport with a team that specializes in the management of AD is useful. For patient education information, see the Dementia Center.

Caregivers are an important component in the care of persons with AD. In most instances, caregivers are family members. Caregivers endure a significant burden that might result in physical and emotional disorders. [151] Accordingly, a good program for the treatment of persons with AD, with or without DS, should include education for and protection of the caregivers.

A program consisting of 2 sessions of individual therapy for the caregiver of a person with AD (usually the spouse), 4 sessions of family counseling, support group participation, and continuous availability of phone counseling for the caregiver resulted in a 28.3% reduction in nursing home placement and a delay of almost a year and a half in the admission to a nursing home when that was needed. These positive results were achieved without a negative impact on caregiver well-being.

Individuals with DS are considered independent adults once they reach the age of 18 years. Instruct parents to obtain legal guardianship through the courts; otherwise, any authorization provided by the parents has no legal value. Discuss issues such as surgical procedures, placement of feeding tubes, and hospice care with the legal guardians.

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