QUALITY OF LIFE OF PATIENTS WITH MILD DEMENTIA (QOL-MILD DEMENTIA): DEVELOPMENT OF A NOVEL INSTRUMENT

Abstract

Early diagnosis and timely intervention is crucial in the overall management of dementia. Successful interventions should importantly be able to improve quality of life (QoL) of patients with Mild Dementia. However existing QOL questionnaires, do not adequately consider various aspects of mild dementia. The objective of this study is to develop a dedicated tool to measure the QoL in mild dementia. To understand the major QoL measures in mild dementia, a thorough review of existing literature as well as several focus group discussions with patients and caregivers of Mild AD was conducted. A field version of the QoL-Mild Dementia comprising of 6 domains and 71 test questions were constructed. This questionnaire was presented to 8 Subject Matter Experts (SME). Each question was individually reviewed for their clarity and applicability on a likert scale of 1 – 5. Concurrently, this questionnaire was administered to a pilot group of ten patients who provided feedback on the relevance of the questions. Responses were categorized into 3 groups: positive, negative and neutral. Questions that had varied responses (<70% of responses in 1 group) were analyzed for differences in demographic and cognitive variables. Mild AD comprised 70% males; mean age 71.60 ± 9.31 years; mean education 8.40± 3.72 years and mean disease duration 21.70 ± 3.92 months. Of the 71 questions, SMEs rated 11 below 4, while patients rated 13 questions to be “Not Applicable” and 11 had varied responses. Of this, younger patients responded significantly in the negative direction on 2 questions: “Since I was aware of my diagnosis of dementia, do people have difficulty understanding me?” (p = 0.028) and “Do I feel discriminated/disadvantaged because of my dementia? (p = 0.018). Patients who had a longer duration of disease reported worse on the latter question (p = 0.011). Field testing results indicate, age and duration of disease to be important factors influencing QOL in mild dementia. Findings from SMEs highlight the importance of a dedicated QoL for mild dementia. This study is currently ongoing and the final version of the QoL-Mild Dementia is expected over the next 6 months Breakdown of number of questions based on Subject Matter Expert’s ratings Extract of the questions from the field version of the QOL-Mild Dementia