Ethnography in a group home for people with Down syndrome and dementia

• Research type

  Research Study

• Full title

  Investigating multiple perspectives of ageing in place with Down syndrome and dementia: an ethnographic study in a learning disability supported living setting.

• IRAS ID

  190972

• Contact name

  Sam Quinn

• Contact email

  samuel.quinn@uws.ac.uk

• Duration of Study in the UK

  0 years, 10 months, 1 days

• Research summary

  There is an increasing population of people ageing with a learning disability. Notably, people with Down syndrome are living into their fifties and sixties. However, there is also higher prevalence of early onset dementia for people with Down syndrome; typically in their early fifties.

  Many people with a learning disability live in supported accommodation in Scotland. Many of these settings have adopted a model called 'ageing in place'. This model supports individuals to remain in their own home as they age or as a chronic condition continues, with adaptations provided when and where they are needed.

  This ethnographic study will investigate multiple perspectives of ageing in place with Down syndrome and dementia in a shared group home setting. This will include the views of participants with a learning disability, some of whom have dementia, relatives and group home staff and managers. This is in order to understand if, and how far, the ageing in place model is an appropriate model of care for individuals with Down syndrome and dementia living in a small group home. This is an issue of global relevance given the lack of conclusive evidence of factors contributing to successful ageing with a learning disability and dementia in different care settings.

  The research design is an ethnographic study guided by the principles of social constructionism. Multi-­methods will be used to consider the different perspectives of residents, relatives and staff. These will include:
  • an eight month participant observation with three residents, two with Down syndrome and dementia and one with a non­-specific learning disability,
  • two focus groups with group home staff and management,
  • approximately eighteen semi­-structured interviews with nine family members (currently estimated at three family members per resident).
  Thematic analysis will be used to analyse the different sources of data.

• REC name

  Scotland A: Adults with Incapacity only

• REC reference

  16/SS/0011

• Date of REC Opinion

  18 Mar 2016

• REC opinion

  Further Information Favourable Opinion