The DEMQOL is a standardized questionnaire designed to quantify the quality of life (QoL) of individuals with mild to moderate neurocognitive disorders (NCD) of the Alzheimer’s and related types through the measurement of behavioral and psychological symptoms known to effect well-being and explores such symptomology as agitation, depression, anxiety, disinhibition, and irritability (Banerjee et al., 2006). The DEMQOL can be administered either as a self-report or interview as well as through information gathered from an informant (Rowen et al., 2012). The self-report/interview and informant-based instruments differ slightly and contain 28 and 31 items, respectively, that are designed to address three main concerns: (1) an individual’s thoughts toward his or her feelings; (2) thoughts toward memories; and (3) everyday life. During administration the respondent is asked to consider his or her feeling over the previous week. An example question of the DEMQOL is, “How worried have you been about not having enough company?” The assessment uses 2 4-point ordinal scales (1 to 4) with example possible scoring choices being (1) a lot to (4) not at all. The self-report/interview format total scores range from 28 to 112 and the proxy version scores have a range of 31 to 124. The measure can be completed in less than 10 minutes with higher scores indicating better QoL.
A factor analysis of the 28-item self-report version displayed a 4-factor model composed of daily activities, memory, negative emotion, and positive emotion that accounted for 49.9% of the variance, whereas analysis of the DEMQOL-Proxy yielded only a 2-factor model of functioning and emotion, which accounted for 35.2% of the variance (Smith et al., 2007). The same study found that the self-report DEMQOL had an internal consistency of α = 0.87 and test–retest reliability was of r = 0.76 (Smith et al., 2007). Furthermore, it was determined that the discriminant validity between the DEMQOL and Quality of Life in Alzheimer’s disease (QOLAD) assessment was 0.39 and convergent validity was 0.54 (Smith et al., 2007). A literature review of six instruments, which included the QOLAD, DEMQOL, Quality of Life in Late-Stage Dementia, Dementia Quality of Life instrument, Cornell Brown Scale for Quality of Life in Dementia, and the Alzheimer Disease-Related Quality of Life, concluded that the DEMQOL and QOLAD were the most suitable for use across a range of disease stages and have the advantage of having both patient and proxy versions available (King, Zapart, Sansoni, & Marosszeky, 2008).
The DEMQOL assessments are both relatively quick and simple measures that require no special training or permissions. There is also a good amount of research in support of their use for both clinical and research applications. The DEMQOL is unique in that it is specifically designed for those with NCD of the Alzheimer’s and related types and may be particularly useful for those with mild to moderate impairment. The self-report and caregiver versions can be used separately or in conjunction with each other, allowing the clinician to gain further insights into client QoL.
Quantifying QoL can be vague and ill-defined for individuals with NCD, as accurate assessment of one’s own QoL is predicated on intact cognitive processes and the ability to retrieve and integrate information into a wider context as well as an awareness of one’s life circumstances (Gertz & Berwig, 2008). Assessment by proxy can be challenging as well because the assessment of another may be influenced by subjective characteristics, such as personality, nature of the relationship, the amount of time spent together, and level of impairment. A study by Barroso-Sousa et al. (2013) found that statistically significant differences existed between self-reported ratings and caregivers’ ratings of subjects’ QoL, as caregivers often rated the person’s QoL lower than the patient did. Results of a study by Gomez-Gallego, Gomez-Garcia, and Ato-Lozano (2015) generally concurred. They found that QoL evaluations of an informant group seemed to be influenced by their own emotional state and the inner experience, often about the effects of the disease process and overall, suggested that caregiver ratings might be more useful for monitoring the efficacy of treatment when burden is low.
The DEMQOL, when used as either caregiver proxy or self-report, has specific instructions to follow for accurate administration, thus ensuring standardization. The DEMQOL-Proxy version contains 31 questions as well as 1 practice question that address memory, feelings, and everyday life, where each item is scored as either (1) a lot, (2) quite a bit, (3) a little, and (4) not at all. One final item on each test is scored as either (1) very good, (2) good, (3) fair, or (4) poor. Similar to the caregiver version, the self-report has the same responses but only 28 overall questions. Some items need to be reversed when scoring where total scores range from 31 to 124 (proxy version) and 28 to 112 (self-report/interview version), with higher scores for both indicating better QoL.
|In the last week, have you felt…|
• Worried or anxious?
• That you are enjoying life?
|In the last week, how worried have you been about…|
• Forgetting who people are?
• Forgetting what day it is?
|How worried have you been about…|
• Getting help when you need it?
• Getting to the toilet in time?
• Not having company?
• People not listening to you?
• Getting the affection you want?
Adapted from Mulhern, B., Rowen, D., Brazier, J., Smith, S., Romeo, R., Tait, R.,…Banerjee, S. (2013). Development of DEMQOL-U and DEMQOL-PROXY-U: Generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technology Assessment, 17(5), 26-27.