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Exploring stigma and prejudice towards people living with dementia in Extra Care Housing


   School of Allied Health & Community

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  Dr Julie Barrett  No more applications being accepted  Funded PhD Project (Students Worldwide)

About the Project

Supervisory team

Director of Studies:

Dr Julie Barrett, Association for Dementia Studies, School of Allied Health and Community, University of Worcester

Supervisors:

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.

Context

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.

Application Process

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

Funding Notes

a tax-free bursary of £15,609 for 3 years
a fee-waiver for 4 years (expectation that full time students complete in 3 years. If student enters year 4, bursary stops but fees waived)
a budget to support your direct project costs including dissemination costs

References

Atkinson, T., Evans, S., Darton, R., Cameron, A., Porteus, J., and Smith, R., 2014. Creating the asset base – a review of literature and policy on housing with care. Housing, Care and Support, 17(1) EarlyCite. www.emeraldinsight.com
Barrett, J. (2012). Provision for people with dementia within Housing with Care: Case studies from HDRC Steering Group Providers. HDRC report.
Barrett, J. (2015). HDRC membership event, 16th June 2015: Advantages and disadvantages of different models of Housing with Care schemes for people living with dementia. HDRC report. Available from: https://housingdementiaresearch.wordpress.com/publications/
Barrett, J. (2016). Exploring the views of people living with dementia in housing with care settings and their carers. HDRC Summary Report. Available from: https://housingdementiaresearch.wordpress.com/publications/
Barrett, J. (2021). HDRC survey: provisions for people living with dementia in Extra Care Housing settings in the UK. Available from: https://www.housinglin.org.uk/Topics/type/HDRCsurvey-provisions-for-people-living-with-dementia-in-Extra-Care-Housing-settings-in-the-UK/
Batsch, M. L., & Mittleman, L. S. (2013). World Alzheimer’s report 2012: Overcoming the stigma of dementia. London: Alzheimer’s Disease International.
Brooker, D., Argyle, E., Clancy, D. and Scally, A. (2009). The Enriched Opportunities Programme: a cluster randomised control trial of a new approach to living with dementia and other mental health issues in ExtraCare housing schemes and villages. Bradford Dementia Group.
Cohen-Mansfield, J and Wirtz, P. W. (2007). Characteristics of Adult Day Care Participants Who
Enter a Nursing Home. Psychology and Aging, 22(2), 354-360. Corner, L., & Bond, J. (2004). Being at risk of dementia: Fears and anxieties of older adults. Journal of Aging Studies, 18(2), 143–155.
Evans, C. S. (2018). Ageism and Dementia. In L. Ayalon and C. Tesch-Römer (Eds.), Contemporary Perspectives on Ageism, International Perspectives on Aging 19 (pp. 263-275). Cham: Springer.
Evans, S., Fear, T., Means, R. and Vallelly, S. (2007). Promoting independence for people with dementia in ECH. Dementia: The International Journal of Social Research and Practice, 6 (1), 144-150.
Goffman, E. (2005). Stigma. Notes on the management of spoiled identity. New York: Touchstone
Jolley, D. J., & Benbow, S. M. (2000). Stigma and Alzheimer’s disease: Causes, consequences and a constructive approach. International Journal of Clinical Practice, 54(2), 117–119.
Peel, L. (2014). ‘The living death of Alzheimer’s’ versus ‘take a walk to keep dementia at bay’: Representations of dementia in print media and carer discourse. Sociology of Health and Illness, 36(6), 885–901.
Twyford, K. (2016). Individuals with dementia living in ECH: an initial exploration of the practicalities and possibilities. Housing LIN Report.
Twyford., K ,& Porteus., J. (2021). Housing for people with dementia: are we ready? A report from an Inquiry by the APPG on Housing and Care for Older People. All Party Parliamentary Group on Housing and Care for Older People
Urbańska, K., Szcześniak, D., & Rymaszewska, J. (2015). The stigma of dementia. Postępy Psychiatrii i Neurologii, 24(4), 225–230.
Werner, P. (2014). Stigma and Alzheimer’s disease: A systematic review of evidence, theory, and methods. In P. W. Corrigan (Ed.), The stigma of disease and disability: Understanding causes and overcoming injustices (pp. 223–244). Washington, DC: American Psychological Association.
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