RCT Clinical Trial

Improving Quality of Life for People Living with Dementia

Rachel Convery, Ken Mills, Sarah M McGhee, Bruce Elliott, Helen McAskill, Anne Mills

Presented at the Hospice UK Annual Conference, November 2021

Background

  • Dementia presents a major challenge for health care systems with aging populations. Over 46 million people live with dementiaworldwide. This is estimated to increase to 131.5 million by 2050. (1)

  • Much of the care for the person with dementia (PWD), in the early stages, takes place at home, therefore, there is a growing need for an evidence-based approach to home support for PWD and their carers. (2)

Aim: This study will assess the impact of a new, personalised memory games application (App), on the quality of life (QoL) of PWD and their carer(s)

Study Design

  • Single site, randomised controlled study.

  • 30 pairs: PWD and informal carer randomised to two groups with 2:1 intervention to control allocation ratio. 

Outcome Measures

Primary outcome:

  • Quality of life of PWD and their carers: DEMQOL (5) /C-DEMQOL (6) scores compared to comparator group.

Secondary outcomes: 

  • Unanticipated effects of using the personalised App, compared to the non-personalised App. 

  • Feasibility and acceptability of study instruments (i.e. areas of quality of life, communication, and cognitive function): specific questions, interview findings and adherence

Data Analysis

Qualitative Data Analysis: 

  • Thematic and narrative analysis of interview transcripts. 

  • Feasibility and acceptability assessed at week 13 and at the conclusion.

Quantitative Data Analysis: 

Primary Analyses: DEMQOL and C-DEMQOL

Secondary Analysis: Content of, and adherence to, the intervention to explore the effect on the scores.

 

Anticipated results

Engagement with the personalised content may lead to improvement in the QoL of the PWD and/or their carer by facilitating and improving communication

View the full study here: 

References
1. Prince M, Wimo A, Guerchet M, Ali GC, Wu YT, Prina M. Alzheimer’s Disease International. World Alzheimer Report 2015: The global impact of dementia: an analysis of prevalence, incidence, cost and
trends. [Homepage]. United Kingdom: Alzheimer’s Disease International; 2015 [updated 1 October 2015; 6th March 2017]. Available from: https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
2. Chester, H., Clarkson, P., Davies, L. et al. Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a
randomised controlled trial. Trials 19, 546 (2018). https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2933-8#Sec2
3. Molloy DW and Standish TIM. A guide to the Standardized Mini-Mental State Examination. International Psychogeriatrics, Vol. 9, Suppl. 1, 1997, pp. 87-94.
4. Korenke K, Spitzer RL, Williams JB. The Patient Health Questionnaire-2: Validity of a Two-Item Depression Screener. Med Care. 2003, Nov; 41(11):1284-92.
5. Smith, S.C., Lamping, D.L., Banerjee, S., Harwood, R.H., Foley, B., Smith, P., Cook, J.C., Murray, J., Prince, M., Levin, E., Mann, A., & Knapp, M. (2007). Development of a new measure of health-related
quality of life for people with dementia: DEMQOL. Psychological Medicine, 37, 737-746.
6. Brown A., Page TE, Daley S, Farina N, Basset T, Livingston G, Budgett J, Gallaher L, Feeney Y, Murray J, Bowling A, Knapp M, Banerjee S. Measuring the quality of life of family carers of people with
dementia: development and validation of C-DEMQOL. Quality of Life Research. Vol. 29, 2019, pp. 2299-2310.