1. What do we know about our own and the public’s understanding & attitudes to dementia? Do negative attitudes still prevail? Suzanne Cahill, PhD, Associate Professor, Dr Maria Pierce, Senior Research Fellow and Andrew Darley School of Social Work and Social Policy, Trinity College Dublin, & The Dementia Services Information and Development Centre, Seminar at Institute of Gerontology, Jonkoping Hogskolla, March 15 th 2013

2. Acknowledgements

3. Learning outcomes  Describe experience of dementia from a variety of perspectives  Understand prevailing views and assumptions held about dementia in contemporary society  Recognize ways in which people with dementia are often subjected to negative stereotyping and ageist attitudes  Discuss a range of strategies to support person with dementia  Identify implications of workshop for practice

4. -Ann Johnson -“Never be scared of the word Dementia, please never walk by me on the other side. My problems are difficult to explain because you can’t see them” -I have dementia: -I also have a life” -(Sabat et al, 2011)

5. Overview Part 1: Understanding our own attitudes to dementia and the forces that inform and shape these Part 2: Literature review about public awareness and understanding of dementia

6. Scale of Dementia Dementia is a global issue of concern to both developed and developing countries (Downs & Bowers, 2010) – a new case of dementia occurs every 4 seconds (WHO 2012). Across the world 35 million people have dementia with an additional 4 and a half million identified every year (Ferri et al, 2005) In Europe 7 million people have dementia (Prince, 2009) and prevalence is expected to double over next 50 years In Ireland, there are about 42,000 people with dementia, in Sweden about 150,000 of whom 8000 to 9000 are aged under 65 In terms of Global Burden of Disease, disability from dementia higher than almost all other conditions and dementia is one of the main causes of chronic disability in later life Dementia costs more than cancer, coronary heart disease and stroke combined yet receives a disproportionate amount of health budget s

7. Current Realities Lack of focus risk reduction and prevention Invisibility of dementia absence of diagnosis Many people unaware they have disease Inadequate service supports Widespread misconceptions

8. What is dementia? Normal part of ageing Brain disease Mental health problem Disability

9. Does dementia differ from other illnesses? Cancer Coronary disease Diabetes DepressionMultiple Sclerosis Arthritis Stroke DepressionCOAD

10. Which one of these illnesses would we fear most? CancerStroke Brain tumourEpilepsy Dementia Kidney failure Schizophrenia

11. Activity 1 In groups of 3 Imagine you were recently diagnosed with Alzheimer’s disease. 1. Consider what might happen to you as a result of this diagnosis? 2. Who would you tell?

12. One reason why dementia is feared and why it differs from other illnesses is because it is not only a disease ………. But also a social construction The stigma, the taboos, the isolation and frustration that result from a feeling of incomprehension are not physical symptoms of Alzheimer’s disease but rather the perception that society has of the illness Van Gorp & Vercruysse, Framing and Reframing: A different way of communicating about AD, 2011

13. Stigma Unpredictable Dangerous Hard to talk to Representing undesirable attributes Embarrassing Fear Result is the social distancing employed by others when confronted with mental illness including dementia. (Adapted from Link et al, 1999; Crisp et al, 2000; Werner & Davidson, 2004)

14. Sabat’s Model Negative Positioning (Sabat,2008) Brain damage The persons’ reaction to brain damage How person is treated by others Reactions of person to how they are treated If person only seen through the illness this is their only social persona and will impact on person’s self worth

15. Vicious circle of negative stereotyping Ignorance and society’s negative reactions have the effect of making those with the illness feel insecure and anxious, which may lead to awkward reactions, which in turn lead to even further lack of understanding. (Van Gorp & Vercruysse, 2012)

16. Societal images of dementia? ADI London debate: “Is the portrayal of Dementia in the mass media enhancing or Reducing Stigma?” In last 4 decades in the UK, reporting of dementia in the media has been extremely negative. People with dementia said to be “looking ugly, talking rubbish and smelling bad” (Fiona Phillips) Media tend to reinforce negative perceptions (Clarke, 2006, Kirkman 2006) focus on terminal stage of dementia Carbonelle et al, 2009) and often emphasise the heavy weight dementia places on the family (Pin le Corre et al, 2009). Consensus that the media has responsibility to change attitudes and influence policy.

17. Images of dementia portrayed by media

18. Activity 2 How we communicate about dementia is related to deeply rooted ideas and metaphors 1. Identify three factors you believe have shaped and informed your thinking about dementia? 2. Have your views changed over the last 5 years?

19. Different ways understanding Dementia Biomedical disease caused by pathology Age related occurrence Something to be feared and stigmatizing A bio-psycho-social condition (Kitwood, 1997) A bio-psycho-social physical condition (Keady, et al. 2013) Citizen and rights based approaches (Bartlett and O’Connor, 2007)

22. Reframing Dementia. Focus on personhood and retained abilities (Kitwood, 1997) Shift from deficit approach (with focus on problems and limitations) stepping outside the pathology rhetoric (Steve Sarat) Shift from dementia being an individual problem to a collective responsibility, from having a focus on deficits to assetts, from inclusion to exclusion (O’Shea, 2012) Counterframes have been developed in Belgium to challenge the stigma of dementia (Van Gorp & Vercruysse (2012)

23. Who is the person with Dementia? Music lover Sports player Avid reader Mother, father Sister brother Wife, husband Lover friend employe e The person with dementia is potentially you or me

24. How can we help a person with AD?

27. Activity 3 List three words to describe how People with dementia Family caregivers Health and Social Care staff experience dementia care

28. Words of people with dementia DVD Agnes and Nancy

29. Part 2 Systematic review of the literature on public’s knowledge attitudes and understanding and attitudes to dementia Why is it important to know what the public understand?

30. Awareness campaigns need to be relevant to the context and the audience (WHO, 2012) Need to first examine what people already know or believe about dementia in order to develop effective strategies to raise awareness. Dementia communication strategies are likely to be more effective, if grounded in an understanding of what people currently know about dementia (Corner and Bond, 2004)

31. Public awareness Raising awareness of dementia singled out as important area of public health policy (WHO, 2012) and is an integral component of most national dementia strategies In US, Obama Administration - investing $8.2 million over 2 years to support public awareness and improve dementia awareness IN UK, British PM’s Challenge on Dementia aims to deliver major improvements in dementia care & research by 2012 (DOH, 2012). Many people according to him do not understand dementia and thus people lack knowledge about how to help and support those living with dementia

32. Political advocacy Alzheimer Society of Ireland Fight Alzheimer’s disease and save Australia Paris Declaration

33. To:  Systematically obtain and evaluate relevant literature on the topic of the public’s knowledge and attitudes towards dementia  Summarise current research findings and  Draw conclusions for future research Systematic Review

34. A replicable scientific and transparent process that aims to minimize bias through exhaustive literature searches of published studies ……..and by providing an audit trail of the reviewer’s decision, procedures and conclusions (Tranfield et al, 2003)

35. Key Stages 1. Purpose of review must be defined 2. Criteria must be established to guide selection of studies 3. All studies that meet the criteria spelt out must be included 4. Key features or each study should be identified 5. A synthesis of results must be produced (Millar, 2004)

36. Inclusion Criteria 1. Only studies published in English in peer reviewed journals since January 1995 to Feb 28 th 2013 2. Abstracts, letters to editors, conference proceedings, books, book chapters, and reports were excluded 3. Only studies which identified key terms in the title, abstract or article were included in the review

37. Key Words used Dementia or Alzheimer’s Disease and Knowledge or Beliefs or Understanding and General Public or Societal or Public Articles were reviewed by two researchers to ensure they satisfied inclusion criteria METHODS (1)

38. Four key strategies used: 1.On-line data-bases (PubMed, ScienceDirect, Sage and PsychInfo and PsychArticles ) 2. Internet search using Google 1. References belonging to relevant articles checked to identify any additional studies 2.Library search conducted at Trinity College library METHODS (2)

39. Research Studies examined to assess:  Methodologies: (Quant/Qual/Mixed Methods, National or cross National, sampling approach used)  Design: data collection instruments, cross-sectional or longitudinal, academic or market  Studies key focus: Knowledge, beliefs, attitudes, concerns, behaviours  Limitations:

40. Results

41. QuantitativeQualitativeMixed Methods Total Number of Studies 27 3 0 30 Table 1: Numbers of Research Papers published between 1995 and February 2012

42. Table 2: Countries where Studies on Public Knowledge, Attitudes & Understanding of dementia were conducted LocationStudies United Kingdom/Scotland/N Ireland 6 USA 4 France 1 Australia 4 Israel 5 Pakistan 1 Brazil Japan Turkey 2 1 Greece 1 Total 26

43. Table 3: Cross-national studies of Knowledge & Attitudes, Concerns and Behaviours AuthorCountriesStudy Focus MethodsNumber of Papers Rimmer et al (2005) (ADI commissioned) Workmann et al (2010) France Germany Spain Poland Italy and UK France, Germany Spain, Poland, Italy and UK Knowledge, attitudes concern, behaviour Knowledge attitude, concern behaviour Random Sample Face to Face interviews N=1800 On-line survey. N=1000 2

44. Different scales used AD knowledge scale Dementia knowledge scale Vignettes Own scales

45. Most studies investigate understanding Risk factors Causes Symptoms Treatments Prognosis Fears

46. Some investigate: Government responsibility for dementia Health seeking behaviours Attitudes to People with Dementia

47. Main Findings Basic awareness of dementia fair to good but poorer in ethnic minorities where stigma and shame about dementia remain prevalent Studies examining demographic factors consistent in showing that age (middle age), sex (females) and education (high) are associated with better understanding Most studies show predominant image of dementia is negative Carers and people who know people with dementia fear most

48. Misconceptions Most common misconception is that dementia is normal part of ageing – unclear point at which normal age-related memory loss problems becomes severe enough to indicate dementia, also limited understanding of early onset dementia Another common misconception is that the individual has no control over avoiding or reducing risk of developing dementia (knowledge of modifiable risk factors for AD very poor)

49. Public Awareness RISK FACTORS: Overall, studies demonstrate poor awareness & little knowledge about modifiable risk factors (Corner and Bond 2004; Edwards et al., 2000; Hudson et al., 2012; Low and Anstey, 2007; Le Pin, 2008; Yeo et al., 2007). For example About 1/4 know that hypertension & cholesterol increase risk of developing dementia. Between one-fifth and one-third identify smoking. Awareness of genetic determinants on the otherhand reasonably good. General public know less about risk factors for dementia than they know about other aspects of dementia & uncertainty. CAUSE : Age commonly recognised as a RF for dementia, but uncertainty about the point at which ‘normal’ age-related memory problems becomes severe enough to indicate dementia: also limited understanding of early onset dementia (Arai, Arai and Zarit, 2008; Corner and Bond, 2004; Devlin, 2007; Le Pin, 2008; Siddiqui et al., 2011).

50. Discussion Burgeoning body of literature in this area This presentation - work in progress Basic awareness of the non-modifiable risk factors fair to good but poor understanding of modifiable risk factors such as hyptertension smoking exercise and obesity Myths and misunderstandings continue to prevail amongst certain groups particularly minority groups

51. Conclusion The review show that stigma, fear and nihilistic views about dementia are still prevalent across the world Part of the fear of dementia lies in wider cultural dread and discomfort surrounding all forms of mental illnesses A goal of advocacy campaigns should be to dispel fear and create more positive attitudes to dementia but ………. Advocacy campaigns also need to develop balanced apapropriate and realistic messages Finally we need more public health campaigns targetting different age groups and ethnic minorities to improve public understanding about modifiable risk factors

52. Useful websites www.dementia.ie www.livingwithdementia.tcd.ie Tacksa mycket!