Quality of life in dementia

Measuring quality of life in care homes

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: Completed
Funded by: BSMS
CI: Dr Laura Hughes

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. 

Dr Farina is co-ordinating 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). He is also a member of the Work Package 3  team, which seeks to develop anti-stigma interventions for some of the LMICs involved in STRiDE.

Website: https://www.stride-dementia.org/ 
Funded by: UKRI Global Challenges Fund
PI: Prof Sube Banerjee
Status: In progress
Outputs: 

• Musyimi, C.W, Ndetei, D.M., Evans-Lacko, S., Oliveira, D., Mutunga, E. & Farina, N. (2021) Perceptions and experiences of dementia and its care in rural Kenya. Dementia. https://doi.org/10.1177/14713012211014800  
• Oliveira, D., da Mata, F., Mateus, E., W Musyimi, C., Farina, N., Ferri, C. P., & Evans-Lacko, S. (2021). Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study. Ageing and Society. https://doi.org/10.1017/S0144686X21000660  
• Farina, N., Ibnidris, A., Alladi, S., Comas-Herrera, A., Albanese, E., Docrat, S., ... & STRiDE team. (2020). A systematic review and meta-analysis of dementia prevalence in seven developing countries: A STRiDE project. Global public health, 15(12), 1878-1893. https://doi.org/10.1080/17441692.2020.1792527 

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