Resilient strategies for people living with dementia at home V1

• Research type

  Research Study

• Full title

  How people living with dementia and their relatives perceive and use resilient strategies to optimise safety whilst living at home (RESOLV-D).

• IRAS ID

  291285

• Contact name

  Richard Clibbens

• Contact email

  Richard.Clibbens@swyt.nhs.uk

• Sponsor organisation

  South West Yorkshire NHS Partnership Foundation Trust

• Duration of Study in the UK

  1 years, 0 months, 7 days

• Research summary

  Research Summary

  Using a Safety II approach, we want to understand the processes of resilience that people living with dementia and their families use which ‘work well’ in enabling them to live at home safely or despite the presence of safety issues or concerns.
  Research questions
  1. How are safety issues perceived and experienced by people living with dementia and their family carers?
  2. What actions do they take to co-ordinate and monitor their care and home environments, adapt to manage problems as they arise and learn from events that have had good outcomes
  3. What is their experience of current formal and informal societal support in living independently with these safety issues?
  4. How does this experience reflect intended health and social care policy outcomes?

  Why is this significant?
  By identifying and describing these processes of resilience, nurses and others regularly working with people with dementia and informal/ family carers can better understand and support resilient approaches that ‘work well’ in managing or reducing safety concerns

  Summary of Results

  Exploring the experiences of 'resilience' that people living at home with dementia use to stay safe.
  We used a theory of resilient healthcare called 'Safety II' to understand what works well for people living with dementia and their carers at home.

  What did we do?
  Recruited people living in Yorkshire, England with dementia and their carers.
  We completed semi-structured interviews by telephone.
  We carried out a qualitative analysis using a 'framework approach' informed by 'Safety II' theory to identify themes.

  The researchers interviewed 18 people living with dementia and 22 family members and/or carers of a person with dementia.

  What did we find out?
  From analysing the information provided by everyone who took part in the research, the following key strategies people used to manage safety issues when living at home with dementia were identified as four themes:
  Theme 1. Incorporating
  The individual ways in which people used and adapted systems and equipment such as; 24 hour call systems, phones or cameras to reduce risks and encourage independence for the person with dementia. Some of the research participants had also incorporated ideas, techniques and approaches from other people with dementia or carers that they had spoken with.

  Theme 2. Experiential learning
  Many people described how they had learned through experience, or trial and error. In this way trying different approaches to manage any safety issues as they happened and sticking with those that worked.
  Theme 3. Maintaining a 'sense of self'
  The importance of self identity and of how other people responded to the person with dementia was often described as of high importance and the ways in which people maintained a 'sense of self' and reduced any threats to their identify were described. This was very important for many people in terms of their emotional or psychological safety. This was often related to continuing with what was sometimes described as 'normal life', socialising with others and maintaining activities and interests while living with dementia.
  Theme 4. Flexibility and adaptation
  People interviewed described how important it was in the presence of dementia to be able to continually learn and adapt to changes as they happened over many years. The importance of positively adapting to these changes and being open to trying new strategies to manage any safety issues was highlighted.

  Recommendations from the research.
  It is essential that health and social care organisations providing interventions or support to people living at home with dementia and their carers recognise the importance of resilient strategies that these individuals employ. People living with dementia at home and those caring for them can be seen to demonstrate innovation, flexibility, and adaptation. It is in this way vital that people receiving health and social care are not viewed as somehow passive care or service receivers, but as active, self-determining individuals and that formal care support provided is flexible enough to integrate with self-determined individual resilient approaches.
  A key theme from the data was the role of technology (including remote camera access, voice activation, GPS tracking and fall monitoring). As technology rapidly continues to develop the resilient ways in which people with dementia and their carers utilise this will need to be evaluated through further research. Risks from this technology to the person with dementia's privacy and self-determination will also benefit from further research, together with a deeper understanding of ethical challenges these emerging technologies may bring with them.

• REC name

  Wales REC 6

• REC reference

  21/WA/0076

• Date of REC Opinion

  11 May 2021

• REC opinion

  Further Information Favourable Opinion