The Prime Minister’s Challenge on Dementia aimed to change common misconceptions about dementia and to make dementia care more person-centred. However, social exclusion remains a common problem, particularly for people living with severe dementia in care homes.
Research has revealed a number of approaches to addressing social exclusion. Music, sensory stimulation, massage, aromatherapy, and other meaningful activities can all act as vehicles to facilitate socially inclusive care (when underpinned by person-centred principles). However, these approaches are not used consistently in care homes and people are still often socially excluded. The aim of my PhD project is therefore to investigate the barriers and facilitators to providing socially inclusive care for resident living with severe dementia.
My personal interest in the social exclusion/inclusion of people living with severe dementia in care homes developed during my role as a research assistant on a care homes research project. I soon became aware that there were many residents seemed to be isolated. They were often bed-bound and spent most of the time in their bedrooms with little or no contact with others. Despite the best efforts of staff to move them from their bedrooms to social areas, I observed little evidence of active engagement or communication.
I noted from talking to and observing staff that they were not actively ignoring residents but often struggled to know what to do or how to communicate with them. Many staff also told me they did not think it would make a difference. It seemed that staff lacked the support they needed to engage with residents with severe dementia. It also became evident that family carers were unsure about how to communicate with and improve how they cared for their loved one.
The care home managers that I spoke to felt that they were isolated from wider health and social care organisations, and did not know who to turn to for help. There was consensus among them that training for staff was scarce, expensive and too time-consuming to be practical.
From these experiences it was clear that more can be done to improve upon the social inclusion of people living with severe dementia in care homes. The examples of good practices and excellent care that I observed demonstrate that residents with severe dementia can live well with the right support. This has encouraged me to explore ways of improving care and practice for people living with severe dementia in care homes.