An evaluation of the feasibility of the routine measurement of quality of life of people with dementia in care homes using DEMQOL-Proxy

  • Laura J. Hughes

Student thesis: Doctoral Thesis


Background: A third of people with dementia in the UK live in care homes and there has
been an increasing focus on the quality of care provided to them. One possible strategy to
monitor and improve care is by routinely measuring and therefore understanding better the
quality of life (QoL) of residents, but this is seldom done in practice. In this thesis the
potential of routine measurement of QoL in care homes is investigated.
Method: The study had four iterative stages. (i) Qualitative interviews with care staff and
focus groups with care home managers were carried out to understand staff views about
measuring QoL as a part of routine care. Brief guidance for implementing routine QoL
measurement into care practice was developed. (ii) The ability of care staff to use a QoL
instrument without the need for interviewer-administration was then assessed. (iii) Based on
these findings, DEMQOL-Proxy was adapted into a new version, DEMQOL-CH, for use in
care homes. This instrument was tested to determine if care staff could use it appropriately.
(iv) In the final stage, a preliminary assessment of routine QoL measurement was completed
including a limited assessment of the psychometric properties of DEMQOL-CH when used
in routine care practice by care staff.
Results: The qualitative interviews and focus groups showed that staff were positive about
measuring QoL and fitting a QoL instrument into routine practice. There was a belief that
measuring QoL could provide beneficial outcomes for staff and residents with the potential
for positive impacts on the quality of care provided to residents. Systematic error was
identified when staff self-completed the DEMQOL-Proxy without an interviewer. The
DEMQOL-Proxy was modified to create DEMQOL-CH, this reduced the error, producing a
version that could be used more accurately by care staff. Care staff were able to rate resident
QoL routinely in care practice with an average frequency of monthly ratings for each
resident. In a limited evaluation, when used in care homes by care staff DEMQOL-CH
showed acceptable psychometric properties with satisfactory reliability and validity and a
clear factor structure.
Conclusions: The research presents preliminary data on the acceptability, feasibility and
performance of routine QoL measurement in care homes using an adapted version of
DEMQOL-Proxy called DEMQOL-CH. Results provide a proof of the concept that routine
measurement of QoL may be possible in care homes. Research is needed to refine and test
the methodology further and to explore the potential for benefits to residents, staff, and care
homes in more representative populations.
Date of AwardAug 2018
Original languageEnglish
Awarding Institution
  • University of Brighton
SupervisorSube Banerjee (Supervisor)

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