Director of Studies:
Dr Julie Barrett, Association for Dementia Studies, School of Allied Health and Community, University of Worcester
New Prof/Director of Association for dementia studies or Senior / Principal Research Fellow
Dr Vanessa Pritchard-Wilkes, Head of Strategic Influence and Strategic Lead on Dementia and Wellbeing, Housing 21.
The term stigma was first used in social sciences (Goffman 2005), defining it as the relationship between a particular trait and social stereotypes. For the individual stigma has been linked with low self-esteem, feelings of shame, a sense of dehumanisation and experiences of social isolation (Urbanska et al. 2015). The current lack of a cure, poor effectiveness of treatments that aim to reduce symptoms and growing public awareness of the disease and its effects, has resulted in considerable fears of getting dementia, which, in turn has led to a high-level stigma being associated with dementia (Corner and Bond 2004). There is now a widespread recognition of an urgent need to reduce the stigma and negative attitudes associated with dementia (Batsch and Mittelman 2013; Jolley and Benbow 2000).
A meta-analysis literature review conducted by Werner (2014) found strong evidence of stigma in relation to people living with dementia, the most common negative emotions being shame, humiliation and disgust. Stigma is perceived as ubiquitous and results in negative consequences for the individual (leading to low self-esteem, shame, humiliation, and social isolation), families (leading to depression, increased burden, concealment, feelings of moral failure and decreased use of services), professionals (leading to differential or delayed diagnosis or treatment) and society (differential access and use of services and increased institutionalisation) (Evans, 2018). In the UK, dementia related stigma and discrimination is often perpetuated by the media (Evans, 2018). The language used in association with dementia in the media often portrays it as disastrous (Peel, 2014). Peel (2014) examined 350 national newspapers and found numerous examples of negative headlines about dementia, containing words such as ‘epidemic’, ‘Tsunami’, ‘a bomb ready to explode’, ‘terrible affliction’ ‘brain wasting’ and ‘worse than death’. Television news channels continue to use the outdated phrase “suffering from dementia”. In recent years, in recognition of the rapid growth in the number of people living with dementia and the associated personal, social and economic costs, many governments across the world have developed national strategies to improve diagnosis, treatment and support.
Dementia related stigma in Extra Care Housing
Although there is a growing body of research evidence that demonstrates the potential of Extra Care Housing (ECH) to promote quality of life and wellbeing for older people (Atkinson et al. 2014), there is some evidence to suggest that, despite a common aspiration to provide a ‘home for life’, ECH often struggles to support residents with dementia and the reality is that many move to residential care when they experience significant problems (Brooker et al, 2009; Twyford, 2016). It is well established that social isolation can have a negative impact on quality of life for all people, and in particular those living with dementia (Cohen-Mansfield & Wirtz, 2007). Studies have identified stigma and prejudice as possible barriers to social interaction for residents living with dementia, which would further impact their quality of life (Evans et al., 2007). The Housing and Dementia Research Consortium (HDRC) undertook a series of case studies in 2012 to assess the provision of care for residents living with dementia in ECH schemes (Barrett, 2012). It was found that residents in the integrated model schemes displayed a negative attitude and prejudice against those residents with dementia and this was the main challenge for management and staff.
In 2015 the HDRC conducted a workshop with HDRC members, including housing providers and commissioners, academics, architects and consultants, to explore the advantages and disadvantages of different models of ECH for people living with dementia (Barrett, 2015). There were three findings from the workshop with relevance to stigmatisation: integrated schemes may perpetuate friction between residents with and without dementia and resentment towards residents with dementia; the ‘dementia wing’ in separated schemes may create a focal point for dementia stigmatisation, a “dementia ghetto” as it were; stigmatisation of the whole scheme may occur for dementia specialist schemes within the local outside community.
Details of the studentship
The studentship is offered for a 4-year period on a full-time basis. The studentship is campus based. During the period of your studentship you will receive the following:
- a laptop and other IT equipment and software as appropriate to the project
- use of the Research School facilities
- collaborating organisation will provide support and guidance for the PHD student within the Extra Care Housing setting, including access to training and understanding of ECH and access to participants across multiple locations.
To begin the application process for this studentship please go to http://www.worcester.ac.uk/researchstudentships and click ‘apply now’ next to the project you wish to apply for. It is expected that applicants will have the following qualifications:
- Education to Masters Degree level in a relevant area.
- A First or Upper Second Honours Degree
It is also expected that applicants will be able to demonstrate the following:
- A sound understanding of, and interest in Person-Centred Dementia Care Research
- Experience of relevant social research methods and skills
- Ability to contribute to the research design of the project
- Proficiency in oral and written English
- Proficiency in IT relevant to the project, e.g. Microsoft Word, Excel, etc.
- Self-motivation, ability to organise and meet deadlines
- Good interpersonal skills
- Ability to work independently
- Ability to work as part of a team
- Commitment and an enthusiastic approach to completing a higher research degree