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Brighton & Sussex Medical School

C-DEMQOL: Dementia Quality of Life measure

C-DEMQOL

C-DEMQOL - a measure of carer quality of life for carers of someone with dementia.

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Background to C-DEMQOL

Carers’ quality of life

An estimated 700,000 family carers support people with dementia in the UK.  Without family carers, the dementia care system would collapse. Family carers provide £11.6 billion annually in unpaid dementia care.  Balancing their own needs alongside their caring role can be extremely challenging and can have negative effects on carer’s quality of life. Some factors that influence quality of life include physical health, psychological wellbeing, social relationships, personal beliefs, and environmental factors.   

Why is this research important? 

It is important to understand the impact of caring for a person with dementia on family carers.  Assessing carer’s quality of life can inform researchers and health and social care workers about the broad impact of the caring role and the effectiveness of support interventions. 

Questionnaires can be used to assess carers’ quality of life, however there are few measures available specifically designed for carers of people with dementia.  The researchers aimed to create a measure which could assess quality of life of carers supporting those with dementia. To find out more, watch the video below.

 

Aims of C-DEMQOL 

This study aimed to:

  1. Develop a dementia specific questionnaire to measure the quality of life of family carers.
  2. To define the content of the concept of quality of life in family carers of people with dementia, and to identify components of good and poor quality of life in different life domains.
  3. To complete a comprehensive evaluation of the psychometric properties including acceptability, feasibility, validity, reliability, and sensitivity.
  4. To produce technical documentation, scoring protocols and normative referencing.

The resulting questionnaire developed is called C-DEMQOL – A measure of carer quality of life.

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Partners and funding

This research was funded by the Alzheimer’s Society.  

C-DEMQOL was developed in partnership with researchers from Brighton and Sussex Medical School, University of Kent, University College London, King’s College London, University of Southampton, and London School of Economics.

Researchers worked in collaboration with the Lived Experience Advisory Panel of family carers throughout the development of C-DEMQOL.  The panel provided invaluable insight as carers and shaped the design and delivery of the research. 

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C-DEMQOL development

Read about the development of the measure here in our publication: Measuring the quality of life of family carers of people with dementia: Development and validation of C-DEMQOL.  

Read more >

The final measure

The final measure is designed to capture quality of life of family carers of people with dementia. It can be researcher or self-administered. The measure composes of 30 individual questions to assess carer quality of life. Question are subdivided under five categories. These categories assess different factors which influence quality of life.

 

CDEMQOL diagram

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Using C-DEMQOL

C-DEMQOL is freely available to download here > 

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Our publications 

Brown, A., Page, T.E., Daley, S., Farina, N., Basset, T., Livingston, G., Budgett, J., Gallaher, L., Feeney, Y., Murray, J., Bowling, A., Knapp, M., Banerjee, S., 2019. Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL. Quality of Life Research. https://doi.org/10.1007/s11136-019-02186-w

Daley S, Murray J, Farina N, Page T, Brown A, Basset T, Livingston G, Bowling A, Knapp M, Banerjee S, September 2018, Understanding the quality of life of family carers of people with dementia: development of a new conceptual framework, International Journal of Geriatric Psychiatry, 1–8. https://doi.org/10.1002/gps.4990 

Link: https://rdcu.be/7MK0

Farina N, Page T, Daley S, Brown A, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S, 2017, Factors associated with the quality of life of family carers of people with dementia: a systematic review, Alzheimer's & Dementia, http://dx.doi.org/10.1016/j.jalz.2016.12.010

Page T, Farina N,  Brown A, Daley S, Bowling A, Basset T, Livingston G, Knapp M, Murray J, Banerjee S, 2017, Instruments Measuring the Disease-Specific Quality of Life of Family Carers of People with Neurodegenerative Diseases: A Systematic Review, BMJ Open,7:e013611, doi:10.1136/bmjopen-2016-013611