Research into living with dementia Dr. Geraldine Boyle,

1. Research into living with dementia Dr. Geraldine Boyle, Lecturer in Dementia Studies,Bradford Dementia Group, University of Bradford Email: g.m.boyle@bradford.ac.uk

2. Bradford Dementia Group • The Bradford Dementia Group, based at the University of Bradford, was established in 1992. • We are a multi-disciplinary academic group committed to making a difference in dementia care, through excellence in research, education and training.

3. We run education and training courses in person-centred care for people with dementia, from non-accredited short courses at introductory level to diploma, degree and Master’s courses. • We also undertake research into the quality of life and quality of care for people with dementia and their families.

4. Overview of research at Bradford Dementia Group Our research focuses on 2 main themes: • The quality of life of people with dementia and the quality of health and social care provided to them and their families. • The lived experiences of people with dementia (i.e. focusing on their experiences of living positively with dementia).

5. The quality of care given to people with dementia and their families Research into primary care • Improving the response of primary care practitioners to people with dementia and their families: a major study which evaluated the effectiveness of educational interventions (e.g. computer-based learning) in improving GP support to people with dementia.

6. 2. Caring Together: developing partnerships with your GP practice: a small-scale study which explored how communication in primary care consultations can be improved between primary care staff, people with dementia and family carers. • Evaluation of the Leeds Memory Service: – a small-scale evaluation of the extent to which this memory service met the information and psychosocial support needs of people with early-stage dementia.

7. Research into the effectiveness of therapeutic interventions • Reminiscence - An ongoing study examining the effectiveness of joint reminiscence sessions for people with dementia and their partners. • Enriched activity – the development and evaluation of a new model of working with people with dementia which maximises their quality of life in specialist nursing homes and sheltered housing through activity and occupation.

8. Dementia Care Mapping (DCM) • DCM is an observational tool for monitoring the quality of care given to people with dementia. • Care is observed in public areas of formal care settings. • One ‘mapper’ observes 5-8 people with dementia continuously over a 6-hour period. • The mapper records the behaviour, mood and level of engagement of the person with dementia in a structured way, using standardised codes, and then assigns an overall well-being or ill-being rating to the individual.

10. The Commission for Social Care Inspection uses a modified version of DCM (called SOFI) to monitor the quality of care given to people with dementia in care homes. • DCM mappers need to be formally trained and assessed before mapping can be undertaken.

11. Lived experiences of dementia Carers’ perspectives • Ethics and dementia - research into the ethical issues and dilemmas experienced by family carers of people with dementia e.g. medication and end-of-life decision-making (Clive Baldwin and Julian Hughes, funded by the Alzheimer’s Society). 2. Support groups for carers from minority ethnic communities – research into the development of culturally-appropriate support for carers from South Asian and Eastern European backgrounds.

12. Transition to residential care – research into the experiences of families whose relatives with dementia are admitted to long-term care.

13. Whose perspective? • Proxy assessments of quality of life (e.g. By relatives or staff) can differ from self-reports (by people with dementia themselves). • Until recently, there was a perception that people with dementia were unable to express their feelings, opinions and views (Wilkinson, 2002). • It was believed that they could not report on their subjective states (Albert et al, 1996). • Assuming that people with dementia are unable to share their views and experiences reinforces negative stereotypes of incapacity (Wilkinson, 2002).

14. ‘Awareness of feeling states’ may be preserved even when awareness of cognitive impairment is reduced (Brod et al, 1999). • People with dementia can be good informants of their own subjective states (Brod et al, 1999). • “We have an imperative to focus on quality of life and the experiences, views and opinions of those people living with the disease” (Wilkinson, 2002: 20).

15. The perspectives of people with dementia • Campaigning for social change: a national study by Ruth Bartlett into campaigning undertaken by people with dementia which explores their motivations and experiences. 2. Participatory video: a local study undertaken by Andrea Capstick, funded by the SHA, which encourages people with dementia to record their life experiences on camera. The film clips will then be used as teaching aids.

16. Ex Memoria: a fictional film, funded by the Wellcome Trust, about living in a nursing home from the perspective of a Polish resident with dementia called Eva, who is trying to make sense of her past and present lives.

18. 4. Awareness in people with moderate to severe dementia living in residential care: a project led by Linda Clare in University of Bangor which examines awareness of their condition in people with more severe dementia, using an interpretative methodology.

19. The social process of everyday decision-making: a study led by Geraldine Boyle into how people with dementia and their spouses make decisions on a daily basis. 6. The Mental Capacity Act and decision-making: planned research into the impact of the MCAon decision-making in health and social care relating to people with dementia.

20. Everyday decision-making by people with dementia • This is a 2-year qualitative study, funded by the national Economic and Social Research Council, which will be carried out between 2010 and 2011. • The research is being undertaken by Geraldine Boyle (University of Bradford) and Lorna Warren (University of Sheffield). • Ethical approval for the research was obtained from the National Social Care Research Ethics Committee.

21. People with dementia and their spouses attending social cafes or support groups run by the Alzheimer's Society will be invited to take part in the study. • Married couples, where one partner has dementia, will be interviewed about the types of decisions they make every day and how they go about making these decisions. • The researchers will also spend time at home with the couples, observing them as they go about their daily routines and make day-to-day decisions.

22. Most research focuses on major decision-making (e.g. re medical care or admission to a care home), but there is a gap in the evidence in relation to minor (everyday) decision-making, which accounts for the bulk of decision-making. • Some people with dementia who lack the capacity to make major decisions, may still retain the capacity to make minor decisions.

23. The study aims to identify the practical support that can help people with dementia to make decisions. • The research will promote better understanding of the decision-making abilities of people with dementia and how to involve them in decision-making. • The findings will be disseminated to couples living with dementia, health and social care staff and researchers, including via a DVD produced for information/training purposes.

24. Context for research – legal reform • The Mental Capacity Act 2005 gave decision-making rights to adults who lack capacity, such as some people with dementia. • The MCA presumes that everyone has capacity (until established otherwise) and requires that assessments of capacity are undertaken on a ‘decision-specific’ basis and that the person should be supported to make decisions.

25. The Mental Capacity Act has promoted greater awareness of the potential for people with dementia to make at least some decisions. • The Act recognises that people with dementia need support with decision-making to enable them to exercise their autonomy. • However, there is a lack of research on the decisional abilities of people with dementia. • This study will aim to provide evidence on their decision-making capacity and abilities.