OBJECTIVES: The increasing life expectancy of people with Down syndrome comes with an increased, age-related risk of Alzheimer’s disease and other forms of dementia. Diagnosing dementia in this setting can be difficult due to varying levels of function even before the onset of dementia. Here, we used expert clinician and caregiver input to adapt a dementia symptom menu and tracking tool for use in people with Down syndrome.

METHODS: A validated dementia symptom menu was adapted by four Down syndrome experts. We then recruited 10 caregivers of people affected by both Down syndrome and suspected dementia to participate in individual semi-structured interviews to review the menu. Each participant reviewed 9-15 goal areas to assess the clarity and comprehensiveness of each item. Responses were systematically coded by two researchers as “clear”, “unclear”, or “remove”. Participants were encouraged to suggest additional items and recommend changes to items that were unclear.

RESULTS: The median caregiver age was 65 years (range 54-77). Most were female (9/10) with ≥15 years of education (10/10). The person for whom they cared had a median age of 58 years (range 52-61) with Down syndrome and either a formal diagnosis (6/10) or clinical suspicion (4/10) of dementia. We adapted a dementia symptom menu consisting of 58 goal areas each with 4-17 descriptors (580 total). Of the 580 descriptors, 37 (6%) were unclear and were reworded; one goal area (4 descriptors) was removed. A further 47 descriptors were added (including one goal area) to include participant-identified concepts. The final menu contained 58 goal areas, each with 7-17 descriptors (623 total).

CONCLUSIONS: A comprehensive goal menu for people with Down syndrome and dementia was developed. Incorporating both expert clinician opinion and input from caregivers of people with Down syndrome and dementia allowed for clinically meaningful items that incorporate patient perspectives.