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Quality of life in dementia

BSMS > Research > Neuroscience > Centre for Dementia Studies > Research > Quality of life in dementia

Quality of life in dementia

The experience of people with dementia and their carers is more than the sum of cognitive and behavioural measures.

New treatments for dementia demand sound methodologies with which to measure quality of life in dementia in response to treatments and in the general population.


C-DEMQOL: Measurement of quality of life in family carers of people with dementia

We have developed a questionnaire to measure quality of life of family carers of people with dementia. 

It is important to measure the impact of caring for a person with dementia on family carers of people with dementia.This is often measured by considering depression, anxiety, burden, or the hassles and rewards of caring and there are instruments to do this. There are however no sufficiently well-developed measures of the overall effect (quality of life) specifically of caring for someone with dementia and therefore the impact of any intervention. This project aimed to develop the first such instrument (C-DEMQOL) to measure quality of life in family carers of people with dementia so that we can evaluate their state and outcomes in descriptive and intervention studies, in health and social care services.

Status: Completed
Funded by: Alzheimer's Society
PI: Prof Sube Banerjee 


Measuring quality of life in severe dementia

It is estimated that one third of people with dementia live in care homes (CHs) in the UK and that 80% of people in CHs have dementia.

There has been increasing concern about the quality of care provided for people with dementia in many homes in the UK and a lack of consensus about how best to measure quality of care. One potential approach to be able to measure the overall well-being of people with dementia in CHs is the routine use of measurement of quality of life (QoL). However, the regular use of QoL measures in CHs as a part of routine care practice is limited. The available questionnaire measures have been developed for research use rather than for use by CH staff, and observational measures developed specifically for use in CHs are often time-consuming and require additional training, which can be costly. The aim of the project is to determine the feasibility, validity and impact of gathering data from care staff using the DEMQOL-Proxy, a well-validated measure of health-related QoL in dementia.The first stage of the study used a mixed methods approach in a small number of CHs in Sussex to determine the feasibility of routinely measuring QoL. Interviews and focus groups were conducted with CH staff to explore the views and opinions of completing a QoL measure as a part of routine care practice. The study assessed different aspects of using a QoL measure routinely such as who is the best person to measure QoL and how often this can be accomplished. Laura is currently assessing the use of the DEMQOL-Proxy by CH staff. 

Being able to accurately measure QoL of people with dementia in a CH setting is the first step in identifying methods to maintain and improve residents' QoL and routinely assess quality of care. By working closely with CH staff, this study will determine the feasibility of routinely measuring QoL in CHs and derive a method for the effective integration of the DEMQOL-Proxy QoL measure into routine care practice.

Status: Write up and dissemination
Funded by: BSMS
CI: Laura Hughes, PhD student (BSMS)

MODEM: comprehensive approach to modelling outcome and cost impacts of interventions for dementia

The MODEM programme will examine existing data to get a clearer understanding of the links between a number of factors: the characteristics of individuals and families, their dementia-related and other needs for care and support, and the services and treatments that could be available to them.

We will look at the effects of care, support and treatments on outcomes for individuals and carers - how those interventions can improve their health and wellbeing - and also on the costs of support. For further information, please see

Status: In progress
Funded by: ESRC
CI: Prof Sube Banerjee


STRiDE: strengthening responses to dementia in developing countries 

Dementia affects more people in low- and middle-income countries than it does in the UK or other high-income countries, yet few countries are prepared for the challenges of the growing number of people with dementia. 

The project will examine current practice, both at a national level and for individual families, both to help people living with dementia to live well, and to ensure that family and other carers do not face excessive costs that could impoverish them or compromise their own health.

A core activity will be to understand the impacts of dementia in various cultural, social and economic contexts in order to support development, financing, planning, implementation and evaluation of National Dementia Plans. 

The Centre for Dementia Studies is leading Work Package 5 of the project, in which we will be generating new evidence about the prevalence, costs, and impact of dementia in low and middle-income countries (LMICs).

Funded by: Global Challenges Fund
PI: Prof Sube Banerjee
Status: In progress

Development of the DEMQOL system

We have developed a disease-specific quality of life measurement system for dementia, based on the soundest of psychometric developments.

Developed in collaboration between the Institute of Psychiatry, the London School of Hygiene and Tropical Medicine, LSE and the University of Nottingham, this system is now widely used in RCTs and service evaluations as well as in routine clinical practice.

Status: Completed
Funded by: NIHR HTA

CI: Prof Sube Banerjee

Development of a utility and monetary weighted instrument to measure quality of life in dementia DEMQOL-U and DEMQOL-Proxy-U

The aim was to develop two brief health-state classifications, one from DEMQOL and one from DEMQOL-Proxy, to generate health states amenable to valuation. These classification systems consisted of items taken from DEMQOL and DEMQOL-Proxy so they can be derived from any study that uses these instruments.

In the first stage of the study we used a large, clinically representative sample aggregated from two sources: a sample of patients and carers attending a memory service in south London and a sample of patients and carers from other community services in south London. This included 644 people with a diagnosis of mild/moderate dementia and 689 carers of those with mild/moderate dementia.

For the valuation study, the general population sample of 600 respondents was drawn to be representative of the UK general population. Households were sampled in urban and rural areas in northern England and balanced to the UK population according to geodemographic profiles.

In the patient/carer valuation study we interviewed a sample of 71 people with mild dementia and 71 family carers drawn from a memory service in south London.

Finally, the instruments derived were applied to data from the HTA-SADD (Study of Antidepressants for Depression in Dementia) trial.

Status: Completed
Funded by: NIHR HTA
CI: Prof Sube Banerjee

Health-related quality of life assessment for people with dementia: The psychology of health in economic evaluation

Status: Completed
Funded by: KCL
PhD Studentship: Mr Kia-Chong Chua

Cross-national longitudinal study of quality of life in dementia

Little is known of how health-related quality of life (HRQL) varies over time and how this may vary between countries. Longitudinal studies are rare and cross-national projects in quality of life even more uncommon.

One of the major challenges in developing better treatments for dementia has been finding outcomes that are sensitive to change and ecologically relevant. For these reasons it is important to develop HRQL measures as potential outcomes for clinical trials. HRQL has excellent face validity as a primary outcome for AD treatments and offers the possibility of detecting clinical significant improvements not captured by current cognitive and neuropsychiatric measures.

Given the relative lack of data, we have been funded to conduct a cross-national longitudinal study of HRQL in people diagnosed with dementia. The data on quality of life in dementia and its measurement would potentially be a valuable resource in planning and interpreting future studies. This study is led from CDS in collaboration with John Hopkins University and will recruit patients with dementia from Sussex Partnership NHS FT and Johns Hopkins Hospital Baltimore.

Status: On hold
Funded by: Abbvie Health Economics and Outcomes Research
CI: Prof Sube Banerjee