Published research supporting use of tools and methods in this resource

A list of studies which may be of interest for further reading.

  1. Dementia experience toolkit - useful links and further reading
  2. You are here: Published research supporting use of tools and methods in this resource

Commissioners, regulators and providers who informed the creation of this resource, asked for the methods featured to be evidence-based. The following published studies may be of interest.
 

1-2-1 Conversations and Interviews

Experiences and expectations of living with dementia: a qualitative study (2016)

How to evaluate quality of care from the perspective of people with dementia: an overview of the literature (2011)

How can we get access to the experiences of people with dementia? Suggestions and reflections (2006)

IDEAL programme: interviews using questionnaires with people living with dementia. The programme has been running since 2014 and is due to continue until 2022.

Photo-Elicitation with Autodriving in Research with Individuals with Mild to Moderate Alzheimer's Disease: Advantages and Challenges (2014)

Use of emotional touchpoints as a method of tapping into the experience of receiving compassionate care in a hospital setting
 

Co-Production and working together with people affected by dementia

This study involved people with dementia and carers in designing a tool to help with discussion of risk, and individual solutions, in dementia care. The tool focusses on the abilities of the person with dementia in planning person-centred care. 
 

End of Life

EVIDEM: End of Life

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes

 

Measuring Quality of Life

Conceptualization and Measurement of Quality of Life in Dementia: The Dementia Quality of Life Instrument (DQoL) (1996)

How to evaluate quality of care from the perspective of people with dementia: an overview of the literature (2011)

 

Observational Methods

Quantity and quality of interaction between staff and older patients in UK hospital wards: a descriptive study (2016)

 

Proxies

Assessing quality of life of older people with dementia: a comparison of quantitative self‐report and proxy accounts (2011)

Ethical and methodological issues in interviewing persons with dementia (2007)

Proxy rated quality of life of care home residents with dementia: a systematic review (2016) 

 

Qualitative Research Methods

Evidence-Based Interventions to Improve Quality of Life for Individuals with Dementia (2007).

More than talking: a scoping review of innovative approaches to qualitative research involving people with dementia (2018) - concluded that qualitative methods can be used to support the inclusion of people with dementia in research, particularly where adaptations are made to make approaches dementia-friendly. 

 

Working with carers

University College London MARQUE study