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Brighton & Sussex Medical School

DEMQOL: Dementia Quality of Life measure

DEMQOL

DEMQOL is a patient reported outcome measure (PROM) which is designed to enable the assessment health-related quality of life of people with dementia.

It was developed according to best quality psychometric principles by a multidisciplinary team including BSMS, KCL, the London School of Hygiene and Tropical Medicine, the London School of Economics and Nottingham and Sheffield Universities. DEMQOL is designed to work across dementia subtypes and care arrangements and can be used at all stages of dementia.

The measure consists of two questionnaires.

  1. DEMQOL is a 28 item interviewer-administered questionnaire answered by the person with dementia.
  2. DEMQOL-Proxy is a 31 item interviewer-administered questionnaire answered by a caregiver.

In the majority of studies, DEMQOL and DEMQOL-Proxy are used together.

Please Note:

We discovered that between 2008 and 2011 there was a numbering error in the DEMQOL-Proxy questionnaire available from the KCL website. This has now been corrected, but if you have used a copy of the DEMQOL-Proxy questionnaire obtained during this time, please contact Prof Sube Banerjee, s.banerjee@bsms.ac.uk, as you may need to make an adjustment to the question numbers before scoring the data.

BACKGROUND IMAGE FOR PANEL
BACKGROUND IMAGE FOR PANEL

DEMQOL development

The development of the measure is reported in Development of a new measure of health-related quality of life for people with dementia: DEMQOL, published online by Psychological Medicine, 19 December 2006.

The development and issues in the measurement of quality of life in dementia are presented in more detail in the HTA Monograph: Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. (Health Technology AssessmentVolume 9. issue 10 (2005).

We have recently completed a programme of work to generate a preference-based single index for the two instruments that comprise the DEMQOL system (DEMQOL and DEMQOL-Proxy) for use in economic evaluation using general population values. In addition, we set out to generate patient and carer values for a sample of states to compare with the general population values. 

The results are available in our published HTA monograph:  

Mulhern B, Rowen D, Brazier J, Smith S, Romeo R, Tait R, et al. Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technol Assess2013;17(5).

Download the algorithms generated (SPSS file) >

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Cross-cultural adaptations of the DEMQOL and DEMQOL Proxy

The DEMQOL and DEMQOL-Proxy have been cross-culturally adapted and/or validated in several languages and settings:       

For further information about these measures, please  consult the relevant development papers or consult the relevant authors.

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