Direct and in-direct observation as a lived experience research method

Find out about using direct observation for measuring the experiences of people with dementia, as well as some more unobtrusive ways you can gather meaningful, personal insights.

Inclusive research

Although direct involvement works well to find out about the experiences of many carers and people with dementia, it can exclude people with dementia, who are less able to communicate. 

This means services miss out on understanding their experiences. That in turn means services lack important insights from a service improvement and development point of view.

If you are looking to learn about the experience of people who struggle with direct communication, or who have complex disabilities, you should consider 'unobtrusive research'. These methods include looking to tell people's stories through gathering data using images, objects and observation.

Observational methods are the right ones for you if you want to:

  • identify areas in which outcomes are being achieved, and potential areas for development
  • gain insight into how individuals experience services
  • understand on-going situations or processes
  • gather data on individual behaviours or interactions
  • help staff reflect on how their service is working and support a continuous improvement cycle
  • understand how a physical setting or environment works.

Observation can be combined with:

  • Interviews, private conversations, group discussions and activities.
  • working with data, noticing and acting on patterns emerging in your data collection.

Unobtrusive methods are the right ones for you if you want to:

  • learn from the experience of people with communication challenges
  • hear from groups of service users who find more direct methods tiring and frustrating
  • avoid the risk of people changing their behaviour because there's a researcher asking them questions or watching them.

Be very careful about ethics when considering using unobtrusive methods to learn about people.

  • Confidentiality and data protection: collecting information without people's knowledge may be violating their right to privacy, misusing their personal data.
  • Some types of information may be public, such as people's conversations on public discussion forums - so not involve an invasion of privacy.
  • Consent may not be gained directly, so check your organisation's processes are sufficient. 

Beware of assuming people don't want to get involved, or will be unable to get involved. 

In some settings staff spend a lot of time in busy, perhaps short-staffed environments, looking to manage risks. This may create some unconscious bias among well-intentioned staff, who are in the habit of looking more at what people can't do, rather than whether, and how, adjustments and support might enable them to have their say about their care. 

There are ways to support communication with people with dementia, sensory and other disability needs.

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2. Dementia Care Mapping

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