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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.

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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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Abstracts / Symposiums

Banerjee, S. (2012). DEMQOL a Patient Reported Outcome Measure for Use in Dementia - Development to Address the Need for Evaluations of Cost Effectiveness as Well as Clinical Effectiveness. Journal of Mental Health Policy and Economics, 15(1), S1.

Dodd, K. (2010). Using the DEMQOL to measure quality of life of people with ID and dementia. Journal of Applied Research in Intellectual Disabilities23(5), 408–418. doi:10.1111/j.1468-3148.2010.00580.x

Richter, M., Damian, M., Jekel, K., Hausner, L., & Froelich, L. (2012). Psychometric properties of a German short version of the patient-rated Dementia Quality of Life Questionnaire (DEMQOL-K). European Geriatric Medicine3(1), S141. doi:10.1016/j.eurger.2012.07.359

Warne, R.W. (2012). Evaluation of DEMQOL in assessing the quality of life (QOL) in residential care. Gerontologist, 52(1), 103.

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