OBJECTIVES : Dementia describes a group of illnesses that cause progressive decline in cognitive functioning. Dementia affects 850,000 people in the UK, and negatively impacts quality of life (QoL). This research describes the design of the individualised Memory Dependent Quality of Life Questionnaire (MemoryDQoL) and the Memory Treatment Satisfaction Questionnaire (MemoryTSQ).

METHODS : Seventeen participants were recruited from London and Newcastle as part of a larger UK research programme on visual hallucinations in people with Parkinson’s, dementia, or eye disease (SHAPED). Participants completed the Mini Mental State Exam (MMSE) to measure cognitive impairment. The initial draft MemoryDQoL used the Audit of Diabetes Dependent Quality of Life (ADDQoL) as a template, and included items selected from an item library from all condition-specific -DQoL measures. The MemoryTSQ was similarly modelled on the Diabetes Treatment Satisfaction Questionnaire (DTSQ) and the item library of condition-specific -TSQs. Design interviews first discussed the impact of memory problems on QoL and interviewees’ experience of treatment before draft questionnaires were completed while ‘thinking aloud’. Items were added, revised or removed as needed between interviews, until no further changes were required.

RESULTS : Four women and 13 men (M=81 years, SD=8.86, range=65-90) participated. The average MMSE score was 21.24 (SD=4.04, range=15-28), indicating mild-to-moderate cognitive impairment. The MemoryDQoL has 17 items; 11 items were unchanged and five items were modified from library items; one new item was created (making/keeping a plan). The MemoryTSQ has 7 items, all items unchanged from the TSQ library.

CONCLUSIONS : Although many participants needed help in reading the questionnaires, they were able to understand and respond to the questionnaire format without the need for revisions. Questionnaire design was facilitated by using existing item libraries and validated measures as templates. This allows for future comparisons across different conditions once psychometric analysis, now underway, has determined the optimal scoring of scales.