- Dementia Services Information and Development Centre

29/04/2015 IAGG-­‐ER 8th Congress Dublin 2015 The Interna=onal Associa=on of Gerontology and Geriatrics European Region Congress 2015, Dublin, Ireland Unlocking the Dividend Divide 23-­‐25 April 2015 Acknowledgements What do we know about the Public’s Knowledge and Understandings of DemenBa? Dr Maria Pierce,1 Associate Professor Suzanne Cahill,2 Prof Paula Werner,3 Andrew Darley4 and Dr Andrea Bobersky2 1 School of Nursing and Human Sciences, Dublin City University, Ireland 2 School of Social Work and Social Policy, Trinity College Dublin & DemenBa Services InformaBon and Development Centre, St. James’s Hospital, Dublin, Ireland 3 Faculty of Social Welfare and Health Sciences, Department of Community Mental Health, University of Haifa, Israel 4 School of Nursing, Midwifery and Health Systems, University College Dublin, Ireland The Policy Context Overview RaBonale for undertaking study What is the research evidence on the general public’s knowledge and understandings of demenBa? Methodological approach – systemaBc review The studies Key findings on the public’s understandings of demenBa and are there differences according to age, sex, ethnicity? What lessons can be learned from research evidence? Summary n 
DemenBa awareness raising singled out as important area of public health policy (WHO, 2012) n 
US: Obama AdministraBon invesBng $8.2 million over two years to support public awareness and improve demenBa awareness n 
UK: PM’s Challenge on DemenBa aimed to deliver major improvements in demenBa care and research by 2012 (DOH, 2012). Many people do not understand demenBa and thus people lack knowledge about how to help and support those living with demenBa Closer to home
Research review to underpin Ireland’s naBonal demenBa strategy n 
InteresBng research on public knowledge and understandings of demenBa in Northern Ireland n 
Irish NaBonal DemenBa Strategy was promised (published December 2014) Why map out state of art findings? n 
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 demenBa in order to develop effecBve strategies to raise awareness DemenBa communicaBon strategies are likely to be more effecBve, if grounded in an understanding of what people currently know about demenBa (Corner and Bond, 2004) 1 29/04/2015 Methods SystemaBc review conducted of studies published in peer-­‐reviewed journals between Jan 1995 and Aug 2014 on the general public’s knowledge and understanding of demenBa Search strategy: n  On-­‐line databases (Pub Med, ScienceDirect, Sage, PsychINFO and PsychARTICLES) n  Supplemented with a search of Google Scholar n  Library search using resources at TCD n  References at end of relevant arBcles checked to idenBfy addiBonal studies Research studies examined to assess: §  Background informaBon on study §  Where were studies undertaken? Single country or cross country studies? § 
What knowledge domains did the studies focus on? § 
Methodological issues: § 
QuanBtaBve, QualitaBve or Mixed Method approaches Sampling approaches Research design: data collecBon instruments Yielded 40 arBcles for review Countries where studies on public knowledge and understandings of demen=a were conducted Type Results Number of studies Single country: US UK (England, Scotland and Northern Ireland) Australia Israel France Greece Turkey Japan Brazil Paskistan 12 6 6 4 1 1 1 1 1 1 Cross-­‐country: France, Germany, Italy, Poland, Spain, UK France, Germany, Italy, Spain, UK France, Germany, Spain, Poland, US 2 2 1 Total 40 Three large cross-­‐na=onal studies of Knowledge, AUtudes, Concerns and Behaviours From ADI: Policy Brief -­‐ Global impact of demenBa 2013-­‐2050 Author Countries Study Focus European Alzheimer’s Survey (2011) France Germany Spain Poland, US Knowledge, Online Survey ajtudes, concerns, N=2,678 behaviour Methods Rimmer et al. (2005) (ADI commissioned) France Germany Spain Poland Italy, UK Knowledge, ajtudes, concerns, behaviour Workmann et al. (2010) France, Knowledge, Online survey Germany Spain, ajtudes, concerns N=1,000 Poland, Italy, UK behaviour Random Sample Face to Face interviews N=1,800 2 29/04/2015 Methodological issues:
Quantitative versus Qualitative
Methodological approach Number of studies
Quantitative 36 (90%)
Qualitative 4 (10%)
Total 40 (100%)
Overall knowledge
Generally knowledge of dementia fair
Scottish study (Devlin at al., 2007): the
majority demonstrated a lack of knowledge
and misconceptions about the condition
Study in Pakistan: 12% of people
answered three basic knowledge
questions about dementia correctly
(Siddiqui et al., 2011).
Methodological issues Sampling approaches: random sampling, convenience sampling, purposive sampling Sample sizes: wide-­‐ranging, some with small samples (typically qualitaBve studies) to some with large samples of 2,000 or more people Response rates varied widely Wide range of data collecBon instruments used n 
Demen=a is a normal part of ageing: A common misconcep=on Northern Irish study:
n  Over one quarter (28%) of those surveyed
viewed dementia as a part of the normal process
of ageing
n  Proportion of people holding this view rose
according to the age of participants (42% in 65+
age group) (McParland, 2012)
Turkish study:
n  Two-thirds of respondents believed this
Knowledge domains under study
Key areas of focus Knowledge of symptoms of
Symptoms of dementia best known
General public’s understanding of nature and symptoms of dementia General public’s understandings of treatments for dementia General public’s understandings of risk factors for dementia n 
Literacy phone survey of 2,000 community
living Australian adults the majority
recognised the symptoms of dementia
General public’s understanding of causes of dementia General public’s understanding of preventive measures 3 29/04/2015 Public understanding of risk factors for demen=a n 
Age commonly recognised as a RF for demenBa, but uncertainty about the point at which ‘normal’ age-­‐related memory problems becomes severe enough to indicate demenBa Also limited understanding of early onset demenBa Awareness of geneBc determinants in reasonably good Modifiable risk factors n  Poor awareness and liqle knowledge about modifiable risk factors n  Less known about risk factor than other knowledge domains n  Much uncertainty n  25% of respondents (UK) agreed that “having high cholesterol may increase a person’s risk of developing AD”, although those with personal knowledge of someone with AD were more aware of the role of cholesterol (Hudson et al., 2012). (Arai, Arai and Zarit, 2008; Corner and Bond, 2004; Devlin, 2007; Le Pin, 2008; Siddiqui et al., 2011) Demen=a risk reduc=on Correlates of knowledge
n  64% of general public in Northern Ireland unaware that diet and exercise may help to delay the onset of demenBa, with significant gender and age differences (McParland et al., 2012) n  Widespread belief (Australia) that risk of developing demenBa can be reduced; but suggesBons (regular check-­‐ups, early diagnosis/
screening, research, medicaBons/drug) not always in line with scienBfic evidence (Low and Anstey, 2009) n 
Correlation between age and knowledge
of dementia could only be gleaned from a
handful of studies
Several found an inverse relationship
between age and knowledge of dementia,
with older people having the least
knowledge, but not for all knowledge
domains or statements
Ethnic differences
Lower levels of knowledge among ethnic minority groups
A UK study showed that knowledge of dementia (aetiology
and symptomology) among older people (both Indian and
Caucasians) was poor.
Indian people had particularly low levels of knowledge of
changes in personality, reasoning and speech as symptoms
of dementia (Purandare et al, 2007).
A US study found that knowledge of AD based on AD Quiz
varied across four ethnic groups. Anglo older adults
significantly more knowledgeable than African American,
Asian and Latino older adults. Not ethnicity per se but level
of education explained differences (Ayalon & Arean, 2004).
4 29/04/2015 Discussion
Review provides evidence of a burgeoning
international literature on the topic of the
general public’s knowledge and
understandings of dementia
Emerging trends showing that general public
have fair to moderate understanding of
dementia and of the non-modifiable risk
factors but the link between age and
dementia continues to be misunderstood
Poor understanding of modifiable risk
factors such as hypertension, smoking,
exercise and obesity
Public awareness campaigns need to
increase accurate knowledge of factors
consistently found to be associated with
dementia. (Low & Anstey,2009)
Few qualitative studies on general public’s
knowledge and understandings of
To design meaningful advocacy
campaigns, communication strategies
need to be grounded in the reality of what
people actually know about dementia and
need to be relevant to the context