ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
A qualitative study of older and middle-aged adults’ perception and attitudes towards dementia and dementia risk reduction Sarang Kim, Kerry A. Sargent-Cox & Kaarin J. Anstey Accepted for publication 26 January 2015
Correspondence to S. Kim: e-mail: [email protected] Sarang Kim BA MA PhD Research Officer Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia Kerry A. Sargent-Cox BAppPsych PhD Research Fellow Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia Kaarin J. Anstey BA PhD Director Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia
K I M S . , S A R G E N T - C O X K . A . & A N S T E Y K . J . ( 2 0 1 5 ) A qualitative study of older and middle-aged adults’ perception and attitudes towards dementia and dementia risk reduction. Journal of Advanced Nursing 00(0), 000–000. doi: 101111/jan.12641
Abstract Aim. To investigate perceptions of dementia and dementia risk reduction held by people without dementia. Background. Dementia does not only affect individuals with dementia, but also has an impact on family and friends, society and healthcare professionals. Recent research has identified modifiable risk and protective factors for dementia. However, it is unclear what knowledge people without dementia have about these risk factors and their attitudes towards addressing these risk factors to achieve dementia risk reduction are not known. Design. Qualitative descriptive study using focus group methodology. Method. A focus group study was conducted in February 2011 with 34 older adults aged between 52-90 years. The long-table approach was used to identify themes and categorize data on dementia knowledge, risk and attitudes. Findings. Participants correctly identified dementia risk factors as a group. Participants’ responses about their perceived likelihood of developing dementia could be classified into three distinctive themes; fear, rational and cynical perceptions. Both fear of developing dementia and the need to improve dementia knowledge were considered major motivators towards adopting healthier lifestyle and health behaviours. Lack of knowledge on risk factors for dementia was identified as a major barrier for behavioural and lifestyle change. Conclusion. These findings can be used to develop effective and personalized interventions that increase motivators and reduce barriers by tailoring interventions to individual’s dementia risk reduction literacy and motivations to change behaviours. Greater public-health promotion and education about risk and protective factors for dementia are also necessary to increase dementia health literacy and to reduce overall dementia prevalence. Keywords: Australia, barriers, behaviour change, dementia, focus groups, healthcare service users, motivations, nursing, risk reduction
© 2015 John Wiley & Sons Ltd
1
S. Kim et al.
Why is this research or review needed? Recent research has identified modifiable risk and protective factors for dementia, which can provide important information for the development of risk reduction interventions. This information is also important for healthcare professionals who provide medical information and recommendations to people they care for. However, knowledge people without dementia have regarding these risk factors and their attitudes towards addressing these risk factors to achieve dementia risk reduction are not known. Research that gives a voice to people without dementia remains absent from the literature.
What are the key findings? High dementia literacy was shown in participants at the group level. However, participants lacked knowledge about dementia at the individual level. Majority of participants feared developing dementia.
et al. 2009). These risk factors are themselves behaviours. Therefore, people might be able to extend their lives without dementia or avoid developing dementia all together in their life time if they are willing and able to make the necessary health behavioural changes (Noar et al. 2007). Identification and being aware of risk factors, however, do not necessarily lead to individuals’ willingness to make the necessary changes to reduce the risk of developing dementia. Insight into why people make behavioural and lifestyle changes for dementia risk reduction is therefore necessary. Currently, research that gives a voice to people on their perspective and attitudes towards dementia and dementia risk reduction remains absent from the literature. We used focus groups to address this gap and understand middle-aged and older people’s attitudes towards dementia and dementia risk reduction. Challenges faced by people without dementia in making these lifestyle changes and motivators leading them to make these changes will also be investigated in this current study.
Main barrier for behavioural and lifestyle change identified was the lack of knowledge while main motivators were education and fear of developing dementia.
How should the findings be used to influence policy/ practice/research/education? Findings can be used to develop effective and personalized interventions that increase motivators and reduce barriers by tailoring interventions to individual’s dementia risk reduction literacy and motivations to change behaviours. They can also be used to promote greater public-health awareness and education about risk and protective factors for dementia to increase dementia health literacy and to reduce overall dementia prevalence. Insights into middle-aged and older people’s perceptions and attitude towards dementia and dementia risk reduction can be used by healthcare professionals to promote healthier lifestyle and health behaviours. This may lead to a reduction in dementia prevalence and subsequently a reduction in medical and other associated cost.
Introduction Existing research demonstrates that there are multiple lifestyle and health behavioural risk and protective factors for dementia (Alzheimer’s Disease International’s 2014), some of which include smoking (Anstey et al. 2007), physical activity (Lautenschlager et al. 2008), alcohol consumption (Anstey et al. 2009) and cognitive activity level (Akbaraly 2
Background Dementia is one of the major global public-health concerns (Alzheimer’s Disease International’s 2014). Forty four million people worldwide are estimated to be living with dementia (Alzheimer’s Disease International) and dementia is the third leading cause of death in Australia (Australian Institute of Health & Welfare 2012). Dementia not only affects individuals who have the illness, but it also has an impact on family and society. It was estimated that US$604 billion was spent on dementia worldwide in 2010 placing a heavy economic burden on society (Alzheimer’s Disease International’s 2010). Twenty five percentages of British National Health Service (NHS) hospital beds were accommodated by someone with dementia (Alzheimer’s Society’s 2009), highlighting the large number of patients healthcare professionals cared for. Despite the high prevalence and severity of the disease, dementia and cognitive decline are often thought of as a part of normal ageing (Clare et al. 2006) and unavoidable (Flicker 2009). At present, there is no effective treatment for dementia (Coley et al. 2008, Chung et al. 2009). There have therefore been increasing calls for greater focus to be placed on prevention strategies (Fratiglioni 1996, Barnes & Yaffe 2011). A multitude of modifiable lifestyle risk factors for dementia have been identified from the range of previous studies (Alzheimer’s Disease International’s 2014). Anstey and colleagues found from their meta-analysis study the older smokers have increased risks of dementia and cognitive © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
decline when compared with those who never smoked and those who formerly smoked (2007). Being underweight, overweight and obese in midlife (40-60 years old), having depression and having high cholesterol levels are also known to increase dementia risk (Anstey et al. 2008, 2011, Saczynski et al. 2010). In contrast, Mediterranean-type diet, physical activity, socially integrated lifestyle and drinking alcohol lightly and moderately are considered to be associated with reduced risk of Alzheimer’s disease (Fratiglioni et al. 2004, Anstey et al. 2009, Scarmeas et al. 2009). However, although lifestyle risk factors for dementia are now well established, there is a gap in our knowledge about how to enable individuals to change their behaviour. Hence, understanding how to develop interventions that result in positive behaviour change is one of the greatest challenges facing dementia prevention research. Theory provides a helpful basis for designing interventions to change behaviour because interventions are likely to be more effective if they target causal determinants of behaviour change (Michie et al. 2008). Most widely used behaviour change theories, such as the Social Cognitive Theory (Bandura 1997), the Health Belief Model (Janz & Becker 1984) and the Theory of Reasoned Action/Theory of Planned Behaviour (Ajzen & Fishbein 1980, Ajzen 1991) offer different causal determinants/constructs to explain behaviour change. Nevertheless, there is a consensus on four major constructs that surround health behaviours and behaviour change. These are (1) health literacy – knowledge of risk factors for the target disease/outcome and ways to address or reduce these; (2) perceived susceptibility of disease/threat; (3) motivation or perceived benefits of performing or changing behaviours to reduce risk of disease and (4) perceived barriers of performing or changing behaviours to reduce risk of disease. However, the investigation into these four constructs with regard to dementia risk reduction intervention programs has been extremely limited in the literature. In particular, directly examining the beliefs, knowledge and perceived motivations and barriers in people without dementia has been largely neglected in the dementia and health behaviour change literature. A limited number of research has examined public beliefs and knowledge about Alzheimer’s disease (AD) (Roberts et al. 2003, 2014, Ayalon & Arean 2004, Connell et al. 2007, 2009, Arai et al. 2008). These studies, however, focused mainly on AD, rather than dementia in general. Previous studies also focused mainly on people’s knowledge rather than their attitudes towards dementia risk reduction and barriers and motivators towards healthy behavioural and lifestyle changes for dementia risk reduction. Racial difference has been a common focus in these dementia literacy studies. It © 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
is therefore essential to first give a voice to people without dementia and identify motivators and barriers for behaviour change for dementia risk reduction and what they perceive to be risk factors for developing dementia. This information may be important for developing effective interventions because it allows us to understand why some people are engaging in lifestyle and behavioural changes to delay or prevent the onset of dementia. It has also been noted, that an overwhelming number of contradicting studies is adding to the public’s confusion. Healthcare professionals who closely work with patients without dementia in community and/or care facilities can play a crucial role in reducing the risk of developing dementia by providing evidence-based information and recommendations leading patients to adopt a healthier lifestyle and behaviour. Knowing the level of dementia knowledge and attitudes held by individuals without dementia and their perspectives of dementia risk reduction is therefore necessary for healthcare professionals to give information more effectively.
The study Aims The aim of this research was to explore and identify motivators and barriers to the health behavioural and lifestyle change to reduce dementia risk. It also aimed to measure peoples’ knowledge on risk and protective factors for dementia and on dementia in general. As a measure of peoples’ perception towards dementia, participants’ perceived risk of dementia was also examined.
Design The current research is a qualitative descriptive study using focus group methodology. Focus group interviews, which is one of qualitative methodologies commonly used for data collection, is becoming increasingly popular in health research for exploring what individuals believe and why they behave in the way they do (Rabiee 2004). Focus groups also give participants the opportunity to subjectively reflect on their individual beliefs, attitudes and ideas while listening to and comparing their experience with those of other group members (Morgan 1998). Therefore, qualitative focus group methodology was selected as the most efficient and reliable design for this exploratory research to capture the shared experience of a group of people and to give voice to people without dementia in a carefully guided, non-threatening group discussions. 3
S. Kim et al.
Participants A convenience sample of 34 participants was recruited through an advertisement in a community newspaper distributed to homes in the Australian Capital Territory and Queanbeyan. Participants of the focus groups met two criteria: (a) age 50 years and older; and (b) without dementia diagnosis. These participants were recruited because this study aims to understand people without dementia about dementia risk reduction. Thirty four participants were assigned to six focus groups and the group size per focus group ranged between 5-7 people. This was within recommendations for optimum group size that is large enough to gain a variety of perspectives and small enough not to become disorderly or fragmented (Morgan 1998, Krueger & Casey 2000). Focus groups were conducted in a private room at the Australian National University. Participants were between 52-90 years old (mean = 6703, SD 885). All were White and majority were women (735%), married or in de facto relationship (647%) and retired (559%). Mean years of education was 145 years.
advertised as the research focus in the print recruitment material. The purpose of the study was explained in the information sheet provided to participants prior to attending the focus groups. Written informed consent was also obtained.
Data analysis The audio files from the focus groups were transcribed verbatim into a Word document. The long-table approach, an effective low-technology method that has been used in previous qualitative analyses, was used to identify themes and categorize results (Krueger & Casey 2000). It allows researchers to identify themes and categorize results by looking at participants’ answers to focus group questions and any other important comments said about the topic. Initial themes were determined a priori (from the focus group guide) and additional categories emerged from the analysis. Participants’ quotations were cut and pasted on separate sheets by the focus group guide question, theme and categories. The analyses of each focus group discussion were combined and each category was reviewed.
Data collection
Rigour
Focus groups were conducted in February 2011. Reflective and open ended questions were used to facilitate discussions and to allow group participants to talk freely. Questions used for the present analysis, which were drawn from the four constructs of behaviour change theories, include the following: (a) ‘literacy’ – what do you think are risk factors for dementia and how can you reduce your risk of developing dementia?; (b) ‘perceived susceptibility’ – what is your likelihood of developing dementia?; (c) ‘motivators and perceived benefits’ – what would motivate you to change your health behaviour and lifestyle to reduce your risk of dementia?; and (d) ‘perceived barriers’ – what would stop you from changing your health behaviour and lifestyle? The primary researcher was assisted by one of two research assistants in being group facilitators. All facilitators had clinical backgrounds as a clinical psychologist or a medical doctor. All focus group sessions lasted for about 60 minutes and were audio recorded for later analyses. After six focus groups had been conducted, data saturation was considered to have been achieved because participants kept returning to the same issues.
To ensure trustworthiness of qualitative data, we used open ended questions. Moreover, during analysis, two researchers each independently read and re-read the transcripts and identify themes and categories. At the end of analysing data, the researchers compared and contrasted themes and categories where debate and discussion were allowed.
Ethical considerations Approval for the study was obtained from the university ethics committee. ‘Dementia Risk Reduction Study’ was 4
Findings After reviewing the discussions, participants’ comments were categorized into the four a priori themes that cover everything raised during focus groups: (1) dementia and dementia risk factors literacy; (2) perceived susceptibility; (3) motivators and perceived benefits; and (4) perceived barriers.
Dementia and dementia risk factors literacy Participants identified many dementia risk factors accurately as a group. Age and genetics were the most recognized non-modifiable risk factors, whereas lack of cognitive engagement was the most recognized modifiable risk factor. Identified risk factors are listed in Table 1. The most common answer participants provided as ways to reduce one’s risk of developing dementia was increasing mental stimulation such as completing cross-word puzzles or Sudoku and learning something new. Other suggestions © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
Perception and attitudes towards dementia risk reduction
Table 1 Identified risk factors for dementia by participants. Demographics
Genetics
Medical conditions
Dietary factors
Toxic exposures
Psychosocial factors
Age Gender
Gene Family history
Diabetes Strokes/mini strokes High blood pressure Heart disease Head injury Obesity Meningitis Hyperthyroidism Atherosclerosis Anaesthetics
Vitamin B deficiency Poor diet
Pesticides Aluminium
Smoking Alcohol consumption Lack of social engagement Lack of cognitive engagement Lack of physical activities Drive (motivation) Trauma, stress Depression Anxiety Loss of control Drugs Removal from familiar setting
that reduce their risk of dementia included increasing or keeping physically active, socializing and maintaining a good diet. Younger participants also suggested giving up smoking and drinking, whereas older participants suggested having regular medical check-ups. Overall, participants had a reasonable knowledge of dementia risk factors and reported that majority of what they knew about dementia was learnt from the media. Some participants were more knowledgeable than others: . . .smoking like you said and too much alcohol consumption and bad food. . .they are finding more and more that physical exercise is keeping the brain working better, which is interesting. . .I certainly think there are hereditary factors in it. . .and then brain damage and anaesthetics for some people. . . (Group 4)
At an individual level however, some lacked knowledge on risk factors of dementia and also on dementia itself. One participant said: ‘Can I ask you a silly question to start with? What is dementia?’ (Group 3) Not surprisingly, dementia was also seen as a normal part of ageing by some participants: ‘. . .I think (dementia) is a natural process of ageing for a lot of people and it isn’t necessarily linked to a particular malfunction’ (Group 3). Some misbelief about risk factors and dementia were also found: ‘I did read a few reports that say smoking actually does reduce your risk of dementia’ (Group 2). Participants also expressed their uncertainty about dementia risk factors because of their conflicting experiences. The following quotes depict the participants’ confusion: ‘For some people it is to do with ageing but for some it is not. Because not only old people get dementia’ (Group 3). Another participant replied: I find it interesting that some people with a wonderful brain and who have done amazing work and they still develop dementia. They tell you if you keep using your © 2015 John Wiley & Sons Ltd
brain, you are less likely to get dementia . . . they are obviously still using their brain and they get it (Group 4).
Perceived susceptibility With regard to their likelihood of developing dementia, three groups of response types were formed. The first (fear) group, which included the majority of the participants, reflected those who avoided the question by expressing their fear instead, as illustrated by the following quote: ‘I am afraid of getting it. . .one of my greatest fears is that I will get dementia. I think the fear of getting dementia is great for me. I am really afraid of not being able to look after myself’ (Group 4). Another participant agreed by saying: ‘I hope to God that I don’t get it. If you know you got it, it must feel dreadful’ (Group 1). The second (rational) group, consisting mainly of men, included those who rationally estimated their likelihood of dementia by comparing their own behaviour and characteristics (what they do or do not do and what they have or do not have) against the risk factors: ‘. . .I don’t drink a great deal and I don’t smoke a lot. . .I’m not particularly intellectually active but probably about average. I would rate my chance probably less than 50% but it’s only a guess’ (Group 2). However, not everyone in the rational group calculated their chance of developing dementia correctly because of incorrect information they held: ‘The longer you live without it I think, the less chance you have getting it. You know, once you get to about 70 or 75 or something (your chance is slimmer)’ (Group 4). The third (cynical) group included people who did not believe in risk factors. Instead, they believed that their luck played a part and that there were no guarantees whether they would or would not develop dementia. This reflected their uncertainty about the cause of dementia: ‘I think it is 5
S. Kim et al.
a bit like a bus around the corner. You might be hit by the bus, but chances are you won’t. . .and dementia is around the corner’ (Group 4).
out and said Hazel (former PM’s wife) got it and this is what we’re doing. . .because I think when a high profile person like that and their family comes out and talks about it, it’s really good for the rest of population (Group 2).
Motivators and perceived benefits to lifestyle change Fear of developing dementia was the main motivator to lifestyle and behavioural changes: ‘If someone says to me if you don’t change your lifestyle you are going to be dead in 5 years (with dementia) I would say OK I would change it’ (Group 3). Groups also believed that education and having more information available on the media that increases peoples’ awareness of and understanding of dementia, rather than simply telling people what they have to do, would motivate people to change: ‘Education is the only way, education through TV or whatever. . .every avenues possible. . .increase understanding, not just blasting people with this is what you should do’ (Group 5). Other motivators for behavioural and lifestyle changes that were cited as having worked in the past included social pressure and banning smoking in office buildings: ‘Social pressure can cause you to change your lifestyle like in your working environment. It became unacceptable to smoke in your office’ (Group 5). Work place and family support were also identified as motivators to change health behaviour and lifestyle: What would motivate me to drop my bad habits. . .I think being able to have opportunities to work part-time and what they call transition to retirement. . .that would make me do more gentle exercises and probably encourage me to go and swim. . .having the opportunities in time to do something little more gentle, yes I would like to be able to. . .if the workforce was more accepting of (transition) (Group 6).
Perceived barriers to lifestyle change The most commonly identified barrier to behavioural and lifestyle changes from the focus groups was the lack of knowledge about dementia: . . .all the signs have been there for years but they just haven’t realized what it was. . .I think a lot of people either don’t recognize the symptoms or they are in denial. They just say she is a bit forgetful or little bit difficult. . .I am a great campaigner for AD or dementia awareness because I think if people are more aware of symptoms and what they could do to help themselves and person they are dealing with, the whole thing would be happier place. . .I’ve got to hand it to Hawke (former Australian prime minister) who came
6
Participants also pointed to research findings that do not provide clear relationships between causes and dementia as another barrier: ‘I think if it is clearly defined which activities contribute towards preventing it, I would have no trouble at all giving up the ones we are at and adopting the one we ought’ (Group 2). Another participant also stated that: ‘if you can clearly see (the cause and effects) you immediately change your behaviours. But you can’t’ (Group 6). Participants also have shown the distrust in experts, which discourages them from following experts’ recommendations to make behavioural and lifestyle changes: . . .experts do not agree on what we should do to prevent the onset of dementia. That’s why people like you are still doing the research. . .I would like to be more aware of more definite things about dementia. It’s all so vague (Group 4).
Giving up enjoyment such as drinking was also reported as barriers along with having poor physical conditions: ‘. . .but (with things) I really enjoy. . .like food. . .that would be much harder (to change/give up)’ (Group 2). Another participant added: ‘. . .if you give up smoking and booze and everything else and you’re miserable, what’s the point?’ (Group 2). Younger participants who are currently working and have children living with them stated that having responsibilities of having to take care of family members and not having support from family and work place were barriers: ‘Well I am not sure how much more I can reduce (my risk of dementia) because of certain circumstances get in the way, for example caring bits’ (Group 1).
Discussion The present qualitative study is the first of its kind to give a voice to people without dementia about dementia risk reduction. Findings suggest that the high dementia literacy was shown in participants at the group level which was consistent with a previous study examining dementia literacy of Australians (Low & Anstey 2009). However, the evidence of high dementia literacy shown at the group level might have been because of a few knowledgeable participants in each group as the range of data generated through the social interaction of the group are often deeper and richer than those obtained from one to one interviews (Thomas et al. 1995).
© 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
The majority in each group lacked knowledge about dementia and dementia risk factors. In particular, participants seemed to lack knowledge on what dementia was. Some considered Alzheimer’s disease (AD) different from dementia although AD is the most common type of dementia (Alzheimer’s Association’s 2009). In addition, some were not aware that there are many types of dementia such as vascular dementia, drug induced dementia and frontal lobe dementia. This result highlights the importance of educating the public and suggests that in depth education on dementia targeting the broader population is required. It should also be noted that a participant’s ability to list risk factors associated with dementia did not necessarily mean that they had good knowledge of how these risk factors impact on them. Some participants expressed their uncertainty about their responses saying that they thought they had heard it from the media, but were unsure. Their responses were not profound and were frequently based on their indirect experiences of dementia through demented family members or friends. Of all the listed risk factors, old age, genetics and lack of mental stimulation were thought to contribute the most to a person developing dementia. Our findings are congruent with previous dementia literacy (Low & Anstey 2009), who showed that the most frequently suggested methods for dementia risk reduction were mental exercise, eating healthily, physical exercise and socializing. In this study, we have found that the majority of participants feared developing dementia, which is contradictory to the findings of Yeo et al. (2007), where they found that most responders (69%) did not worry about developing dementia. Roberts and colleagues also found that only 294% of participants expressed active worry (2014). Personal experience with a relative who has dementia increases personal vulnerability (Williams et al. 2010) and almost all participants in the current study had indicated that they had an indirect experience of dementia through either family members or friends. The participants in this study therefore might have had high awareness of what it is like to have dementia. Yeo and colleagues also found that 72% of responders did not have family members with dementia but if responders had a family member with dementia, they were more likely to think of dementia. This correlated with our study findings. The main barrier for behavioural and lifestyle change identified by participants was the participants’ lack of knowledge. This again highlights the importance of publichealth education about dementia and what can be done to reduce their risk of developing dementia. This is because inaccurate information can play a big role in making a © 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
decision on whether to make behavioural and lifestyle changes to prevent dementia. The main motivators for changing health behaviour and lifestyle for dementia risk reduction were education and fear of developing dementia. It seems that when the fear of developing dementia is larger than the pleasure of doing something that might heighten their risk of dementia (e.g. smoking), changes might occur towards a positive and healthier lifestyle. Individuals are not, however, a homogenous group and have different barriers and motivators and different levels of knowledge on dementia should be considered when developing interventions. Individually tailored interventions therefore would be more successful than a ‘one size fits all’ approach as they address the factors most relevant to a given individual. Previous research on HIV prevention targeting men who have sex with men supported the efficacy of the individually tailored intervention used (Chesney et al. 2003). Their results reinforced the importance of a tailored approach where structured modules are selected and implemented in a manner consistent with individuals’ unique characteristics which predispose them to engage in risk behaviour. Nurses and other healthcare professionals are an essential source of information for people without dementia but who are concerned about their cognitive decline or developing dementia. Healthcare professionals are the first point of contact for the majority of people and they are more likely to be aware of the patients’ medical conditions and lifestyle patterns. As such, they will be able to provide people without dementia individualized evidence-based information and recommendations on dementia risk reduction. Healthcare professionals especially can be of help because there are contradictory or confusing evidence suggested on risk factors and dementia unlike other risk behaviours leading to chronic diseases such as smoking and lung cancer, 90% of all lung cancer cases are directly attributed to smoking (Huxley et al. 2007).
Limitations In interpreting the results of this qualitative research, several study limitations should be noted. The participants in this study were convenience samples, with higher education levels (mean years of education was 145 years) and who were concerned or care about their health and well-being. Participants’ higher than average level of education might have led to higher than average level of general health knowledge in the sample. Therefore, the findings in this study might not be as accurate a representation of the Australian population as it would perhaps be. In addition, findings presented in this exploratory study were developed 7
S. Kim et al.
based on free discussions among participants. It is important to stress that these results are restricted to the associations the participants made in this context and the group studied. Furthermore, although the data saturation was considered to have been achieved with the current participants, a larger number of participants from different backgrounds might have been more representative of the broader public. Because of the recruitment method used in this study, we might have only attracted participants who were eager to learn about dementia risk reduction and eager to change accordingly. Therefore, population representative sample with different degrees of dementia interest should be sought in future recruitment.
Conclusion Despite these limitations, these results offer insights into people without dementia on dementia risk reduction. This study complements and adds to the findings of previous research in the area of dementia literacy/knowledge. This study is an essential first step, because it provides a greater understanding of the barriers and motivators to change health behaviours and lifestyle for dementia risk reduction. The information gathered from these focus groups can identify determinants for behaviour and lifestyle changes for dementia risk reduction. This information can then be used in developing effective and personalized community-based interventions as different techniques will address different causal determinants of behaviour change. In developing effective dementia risk reduction interventions, it is incumbent on healthcare providers to consider not only what the public knows about dementia, but how healthcare professionals can motivate people from changing their lifestyle and health behaviours. Healthcare professionals need to incorporate the knowledge of health beliefs and attitudes of people without dementia into health promotion strategies to facilitate the development and communication of health promotion messages in an effective manner. Nurses and other healthcare professionals need to be sensitive to reasons as to why some people might not change their lifestyle and health behaviour despite the knowledge on dementia risk reduction. Conversely, healthcare professionals also need to understand why some people would change their lifestyle despite the number of barriers to health behaviour and lifestyle changes for dementia risk reduction. Greater public-health promotion and education about risk and protective factors for dementia are also necessary to increase dementia health literacy and to reduce overall dementia prevalence. Insights into people without dementia also highlight the importance of the role healthcare 8
professionals play in educating middle-aged and older adults in both community and healthcare settings, about risk and protective factors of dementia. As nurses and other healthcare professionals are the first point of contact for the majority of people when they are concerned about their health, healthcare professionals can help people without dementia reduce their risk of developing dementia and ultimately reduce overall dementia prevalence.
Acknowledgements We thank the participants who have helped us make this research possible. We are grateful to Jennifer Young and Pushpani Herath for their assistance in conducting focus groups and coding the focus group transcripts.
Funding The authors disclosed receipt of the following financial support for the research, authorship and or publication of this article: [Dementia Collaborative Research Centre PhD Scholarship to S.K.; Australian Research Council Centre of Excellence in Population Ageing Research (CEPAR) Supplementary Scholarship to S.K.; CEPAR (grant no CE110001029) to K.S.; and National Health and Medical Research Council Fellowship (grant no 1002560) to K.A.].
Conflict of interest The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria (recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
References Ajzen I. (1991) The theory of planned behaviour. Organizational behaviour and Human Decision Processes 50, 179–211. Ajzen I. & Fishbein M. (1980) Understanding Attitudes and Predicting Social. Prentice-Hall, Englewood Cliffs, NJ. © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Akbaraly T., Porter F., Fustinoni S., Dartigues J., Artero S., Rouaud O., Touchon J., Ritchie K. & Berr C. (2009) Leisure activities and the risk of dementia in the elderly: results from the Three-City Study. Neurology 73, 854–861. Alzheimer’s Association (2009) Alzheimer’s disease facts and figures. Alzheimer’s and Dementia 5, 234–270. Alzheimer’s Disease International (2010) World Alzheimer Report 2010: The Global Economic Impact of Dementia. Alzheimer’s Disease International (ADI), London, UK. Alzheimer’s Disease International (2014) World Alzheimer Report 2014: Dementia and Risk Reduction. An Analysis of Protective and Modifiable Factors. Alzheimer’s Disease International (ADI), London, UK. Alzheimer’s Society (2009) Counting the Cost: Caring for People with Dementia on Hospital Wards. Alzheimer’s Society, London, UK. Anstey K., Von Sanden C., Salim A. & O’kearney R. (2007) Smoking as a risk factor for dementia and cognitive decline: a meta-analysis of prospective studies. American Journal of Epidemiology 166, 367–378. Anstey K., Lipnicki D. & Low L.F. (2008) Cholesterol as a risk factor for dementia and cognitive decline: a systematic review of prospective studies with meta-analysis. American Journal of Geriatric Psychiatry 16, 343–354. Anstey K., Mack H. & Cherbuin N. (2009) Alcohol consumption as a risk factor for dementia and cognitive decline: meta-analysis of prospective studies. American Journal of Geriatric Psychiatry 17, 542–555. Anstey K., Cherbuin N., Budge M. & Young J. (2011) Body mass index in midlife and late-life as a risk factor for dementia: a metaanalysis of prospective studies. Obesity Reviews 12, e426–e437. Arai Y., Arai A. & Zarit S. (2008) What do we know about dementia?: a survey on knowledge about dementia in the general public of Japan. International Journal of Geriatric Psychiatry 23, 433–438. Australian Institute of Health and Welfare (2012) Dementia in Australia. AIHW, Canberra, ACT. Ayalon L. & Arean P. (2004) Knowledge of Alzheimer’s disease in four ethnic groups of older adults. International Journal of Geriatric Psychiatry 19, 51–57. Bandura A. (1997) Self-efficacy: The Exercise of Control. Freeman, New York. Barnes D. & Yaffe K. (2011) The projected effect of risk factor reduction on Alzheimer’s disease prevalence. The Lancet Neurology 10, 819–828. Chesney M., Koblin B., Barresi P., Husnik M., Celum C., Colfax G., Mayer K., Mckiman D., Judson F., Huang Y., Coates T. & Team T. (2003) An individually tailored intervention for HIV prevention: baseline data from the EXPLORE study. American Journal of Public Health 93, 933–938. Chung S., Mehta K., Shumway M., Alvidrez J. & Perez-Stable E. (2009) Risk perception and preference for prevention of Alzheimer’s disease. Value in Health 12, 450–458. Clare L., Goater T. & Woods B. (2006) Illness representations in early-stage dementia: a preliminary investigation. International Journal of Geriatric Psychiatry 21, 761–767. Coley N., Andrieu S., Gardette V., Gillette-Guyonnet S., Sanz C., Vellas B. & Grand A. (2008) Dementia prevention:
© 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
methodological explanations for inconsistent results. Epidemiologic Reviews 30, 35–66. Connell C., Scott Roberts J. & McLaughlin S. (2007) Public opinion about Alzheimer disease among blacks, hispanics, and whites: results from a national survey. Alzheimer Disease and Associated Disorders 21, 232–240. Connell C., Scott Roberts J., McLaughlin S. & Akinleye D. (2009) Racial differences in knowledge and beliefs about Alzheimer disease. Alzheimer Disease and Associated Disorders 23, 110– 116. Flicker L. (2009) Life style interventions to reduce the risk of dementia. Maturitas 63, 319–322. Fratiglioni L. (1996) Epidemiology of Alzheimer’s disease and current posibilities for prevention. Acta neurologica Scandinavica. Supplementum 165, 33–40. Fratiglioni L., Paillard-Borg S. & Winblad B. (2004) An active and socially integrated lifestyle in late life might protect against dementia. The Lancet Neurology 3, 343–353. Huxley R., Jamrozik K. & Lam T. (2007) Impact of smoking and smoking cessation on lung cancer mortality in the Asia Pacific region. Americal Journal of Epidemiology 165, 1280– 1286. Janz N. & Becker M. (1984) The health belief model: a decade later. Health Education Quarterly 11, 1–47. Krueger R. & Casey M. (2000) Focus Groups. A Practical Guide for Applied Research. Sage, Thousand Oaks, CA. Lautenschlager N., Cox K., Flicker L., Foster J., Van Bockxmeer F., Xiao J., Greenop K. & Almeida O. (2008) Effect of physical activity on cognitive function in older adults at risk for Alzheimer disease: a randomized trial. JAMA 300, 1027– 1037. Low L.F. & Anstey K. (2009) Dementia literacy: recognition and beliefs on dementia of the Australian public. Alzheimer’s & Dementia 5, 43–49. Michie S., Johnston M., Francis J., Hardeman W. & Eccles M. (2008) From theory to intervention: mapping theoretically derived behavioural determinants to behaviour change techniques. Applied Psychology: An International Review 57, 660–680. Morgan D. (1998) The Focus Group Guidebook. Book 1. The Focus Group Kit. Sage, Thousand Oaks, CA. Noar S., Benac C. & Harris M. (2007) Does tailoring matter? Meta-analytic review of tailored print health behaviour change interventions. Psychological Bulletin 133, 673–693. Rabiee F. (2004) Focus-group interview and data analysis. Proceedings of the Nutrition Society 63, 655–660. Roberts J., Larusse S., Katzen H., Whitehouse P., Barber M., Post S., Relkin N., Quaid K., Pietrzak R., Cupples L., Farrer L., Brown T. & Green R. (2003) Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer Disease and Associated Disorders 17, 86–93. Roberts J., McLaughlin S. & Connell C. (2014) Public beliefs and knowledge about risk and protective factors for Alzheimer’s disease. Alzheimer’s & Dementia 10, S381–S389. Saczynski J., Beiser A., Seshadri S., Auerbach S., Wolf P. & Au R. (2010) Depressive symptoms and risk of dementia: the Framingham Heart Study. Neurology 75, 35–41.
9
S. Kim et al. Scarmeas N., Luchsinger J., Schupf N., Brickman A., Cosentino S., Tang M. & Stern Y. (2009) Physical activity, diet, and risk of Alzheimer disease. JAMA 302, 627–637. Thomas L., Mac Millan J., McColl E., Hale C. & Bond S. (1995) Comparison of focus group and individual interview methodology in examining patient satisfaction with nursing care. Social Sciences in Health 1, 206–219.
Williams C., Tappen R., Rosselli M., Keane F. & Newlin K. (2010) Willingness to be screened and tested for cognitive impairment: cross-cultural comparison. American Journal of Alzheimer’s Disease and Other Dementias 25, 160–166. Yeo L., Horan M., Jones M. & Pendleton N. (2007) Perceptions of risk and prevention of dementia in the healthy elderly. Dementia and Geriatric Cognitive Disorders 23, 368–371.
The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of evidence-based nursing, midwifery and health care by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. JAN publishes research reviews, original research reports and methodological and theoretical papers. For further information, please visit JAN on the Wiley Online Library website: www.wileyonlinelibrary.com/journal/jan Reasons to publish your work in JAN:
• High-impact forum: the world’s most cited nursing journal, with an Impact Factor of 1·527 – ranked 14/101 in the 2012 ISI Journal Citation Reports © (Nursing (Social Science)).
• Most read nursing journal in the world: over 3 million articles downloaded online per year and accessible in over 10,000 libraries worldwide (including over 3,500 in developing countries with free or low cost access).
• • • •
10
Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jan. Positive publishing experience: rapid double-blind peer review with constructive feedback. Rapid online publication in five weeks: average time from final manuscript arriving in production to online publication. Online Open: the option to pay to make your article freely and openly accessible to non-subscribers upon publication on Wiley Online Library, as well as the option to deposit the article in your own or your funding agency’s preferred archive (e.g. PubMed).
© 2015 John Wiley & Sons Ltd
A qualitative study of older and middle-aged adults’ perception and attitudes towards dementia and dementia risk reduction Sarang Kim, Kerry A. Sargent-Cox & Kaarin J. Anstey Accepted for publication 26 January 2015
Correspondence to S. Kim: e-mail: [email protected] Sarang Kim BA MA PhD Research Officer Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia Kerry A. Sargent-Cox BAppPsych PhD Research Fellow Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia Kaarin J. Anstey BA PhD Director Centre for Research on Ageing, Health and Well-being, Australian National University, Canberra, Australian Capital Territory, Australia
K I M S . , S A R G E N T - C O X K . A . & A N S T E Y K . J . ( 2 0 1 5 ) A qualitative study of older and middle-aged adults’ perception and attitudes towards dementia and dementia risk reduction. Journal of Advanced Nursing 00(0), 000–000. doi: 101111/jan.12641
Abstract Aim. To investigate perceptions of dementia and dementia risk reduction held by people without dementia. Background. Dementia does not only affect individuals with dementia, but also has an impact on family and friends, society and healthcare professionals. Recent research has identified modifiable risk and protective factors for dementia. However, it is unclear what knowledge people without dementia have about these risk factors and their attitudes towards addressing these risk factors to achieve dementia risk reduction are not known. Design. Qualitative descriptive study using focus group methodology. Method. A focus group study was conducted in February 2011 with 34 older adults aged between 52-90 years. The long-table approach was used to identify themes and categorize data on dementia knowledge, risk and attitudes. Findings. Participants correctly identified dementia risk factors as a group. Participants’ responses about their perceived likelihood of developing dementia could be classified into three distinctive themes; fear, rational and cynical perceptions. Both fear of developing dementia and the need to improve dementia knowledge were considered major motivators towards adopting healthier lifestyle and health behaviours. Lack of knowledge on risk factors for dementia was identified as a major barrier for behavioural and lifestyle change. Conclusion. These findings can be used to develop effective and personalized interventions that increase motivators and reduce barriers by tailoring interventions to individual’s dementia risk reduction literacy and motivations to change behaviours. Greater public-health promotion and education about risk and protective factors for dementia are also necessary to increase dementia health literacy and to reduce overall dementia prevalence. Keywords: Australia, barriers, behaviour change, dementia, focus groups, healthcare service users, motivations, nursing, risk reduction
© 2015 John Wiley & Sons Ltd
1
S. Kim et al.
Why is this research or review needed? Recent research has identified modifiable risk and protective factors for dementia, which can provide important information for the development of risk reduction interventions. This information is also important for healthcare professionals who provide medical information and recommendations to people they care for. However, knowledge people without dementia have regarding these risk factors and their attitudes towards addressing these risk factors to achieve dementia risk reduction are not known. Research that gives a voice to people without dementia remains absent from the literature.
What are the key findings? High dementia literacy was shown in participants at the group level. However, participants lacked knowledge about dementia at the individual level. Majority of participants feared developing dementia.
et al. 2009). These risk factors are themselves behaviours. Therefore, people might be able to extend their lives without dementia or avoid developing dementia all together in their life time if they are willing and able to make the necessary health behavioural changes (Noar et al. 2007). Identification and being aware of risk factors, however, do not necessarily lead to individuals’ willingness to make the necessary changes to reduce the risk of developing dementia. Insight into why people make behavioural and lifestyle changes for dementia risk reduction is therefore necessary. Currently, research that gives a voice to people on their perspective and attitudes towards dementia and dementia risk reduction remains absent from the literature. We used focus groups to address this gap and understand middle-aged and older people’s attitudes towards dementia and dementia risk reduction. Challenges faced by people without dementia in making these lifestyle changes and motivators leading them to make these changes will also be investigated in this current study.
Main barrier for behavioural and lifestyle change identified was the lack of knowledge while main motivators were education and fear of developing dementia.
How should the findings be used to influence policy/ practice/research/education? Findings can be used to develop effective and personalized interventions that increase motivators and reduce barriers by tailoring interventions to individual’s dementia risk reduction literacy and motivations to change behaviours. They can also be used to promote greater public-health awareness and education about risk and protective factors for dementia to increase dementia health literacy and to reduce overall dementia prevalence. Insights into middle-aged and older people’s perceptions and attitude towards dementia and dementia risk reduction can be used by healthcare professionals to promote healthier lifestyle and health behaviours. This may lead to a reduction in dementia prevalence and subsequently a reduction in medical and other associated cost.
Introduction Existing research demonstrates that there are multiple lifestyle and health behavioural risk and protective factors for dementia (Alzheimer’s Disease International’s 2014), some of which include smoking (Anstey et al. 2007), physical activity (Lautenschlager et al. 2008), alcohol consumption (Anstey et al. 2009) and cognitive activity level (Akbaraly 2
Background Dementia is one of the major global public-health concerns (Alzheimer’s Disease International’s 2014). Forty four million people worldwide are estimated to be living with dementia (Alzheimer’s Disease International) and dementia is the third leading cause of death in Australia (Australian Institute of Health & Welfare 2012). Dementia not only affects individuals who have the illness, but it also has an impact on family and society. It was estimated that US$604 billion was spent on dementia worldwide in 2010 placing a heavy economic burden on society (Alzheimer’s Disease International’s 2010). Twenty five percentages of British National Health Service (NHS) hospital beds were accommodated by someone with dementia (Alzheimer’s Society’s 2009), highlighting the large number of patients healthcare professionals cared for. Despite the high prevalence and severity of the disease, dementia and cognitive decline are often thought of as a part of normal ageing (Clare et al. 2006) and unavoidable (Flicker 2009). At present, there is no effective treatment for dementia (Coley et al. 2008, Chung et al. 2009). There have therefore been increasing calls for greater focus to be placed on prevention strategies (Fratiglioni 1996, Barnes & Yaffe 2011). A multitude of modifiable lifestyle risk factors for dementia have been identified from the range of previous studies (Alzheimer’s Disease International’s 2014). Anstey and colleagues found from their meta-analysis study the older smokers have increased risks of dementia and cognitive © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
decline when compared with those who never smoked and those who formerly smoked (2007). Being underweight, overweight and obese in midlife (40-60 years old), having depression and having high cholesterol levels are also known to increase dementia risk (Anstey et al. 2008, 2011, Saczynski et al. 2010). In contrast, Mediterranean-type diet, physical activity, socially integrated lifestyle and drinking alcohol lightly and moderately are considered to be associated with reduced risk of Alzheimer’s disease (Fratiglioni et al. 2004, Anstey et al. 2009, Scarmeas et al. 2009). However, although lifestyle risk factors for dementia are now well established, there is a gap in our knowledge about how to enable individuals to change their behaviour. Hence, understanding how to develop interventions that result in positive behaviour change is one of the greatest challenges facing dementia prevention research. Theory provides a helpful basis for designing interventions to change behaviour because interventions are likely to be more effective if they target causal determinants of behaviour change (Michie et al. 2008). Most widely used behaviour change theories, such as the Social Cognitive Theory (Bandura 1997), the Health Belief Model (Janz & Becker 1984) and the Theory of Reasoned Action/Theory of Planned Behaviour (Ajzen & Fishbein 1980, Ajzen 1991) offer different causal determinants/constructs to explain behaviour change. Nevertheless, there is a consensus on four major constructs that surround health behaviours and behaviour change. These are (1) health literacy – knowledge of risk factors for the target disease/outcome and ways to address or reduce these; (2) perceived susceptibility of disease/threat; (3) motivation or perceived benefits of performing or changing behaviours to reduce risk of disease and (4) perceived barriers of performing or changing behaviours to reduce risk of disease. However, the investigation into these four constructs with regard to dementia risk reduction intervention programs has been extremely limited in the literature. In particular, directly examining the beliefs, knowledge and perceived motivations and barriers in people without dementia has been largely neglected in the dementia and health behaviour change literature. A limited number of research has examined public beliefs and knowledge about Alzheimer’s disease (AD) (Roberts et al. 2003, 2014, Ayalon & Arean 2004, Connell et al. 2007, 2009, Arai et al. 2008). These studies, however, focused mainly on AD, rather than dementia in general. Previous studies also focused mainly on people’s knowledge rather than their attitudes towards dementia risk reduction and barriers and motivators towards healthy behavioural and lifestyle changes for dementia risk reduction. Racial difference has been a common focus in these dementia literacy studies. It © 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
is therefore essential to first give a voice to people without dementia and identify motivators and barriers for behaviour change for dementia risk reduction and what they perceive to be risk factors for developing dementia. This information may be important for developing effective interventions because it allows us to understand why some people are engaging in lifestyle and behavioural changes to delay or prevent the onset of dementia. It has also been noted, that an overwhelming number of contradicting studies is adding to the public’s confusion. Healthcare professionals who closely work with patients without dementia in community and/or care facilities can play a crucial role in reducing the risk of developing dementia by providing evidence-based information and recommendations leading patients to adopt a healthier lifestyle and behaviour. Knowing the level of dementia knowledge and attitudes held by individuals without dementia and their perspectives of dementia risk reduction is therefore necessary for healthcare professionals to give information more effectively.
The study Aims The aim of this research was to explore and identify motivators and barriers to the health behavioural and lifestyle change to reduce dementia risk. It also aimed to measure peoples’ knowledge on risk and protective factors for dementia and on dementia in general. As a measure of peoples’ perception towards dementia, participants’ perceived risk of dementia was also examined.
Design The current research is a qualitative descriptive study using focus group methodology. Focus group interviews, which is one of qualitative methodologies commonly used for data collection, is becoming increasingly popular in health research for exploring what individuals believe and why they behave in the way they do (Rabiee 2004). Focus groups also give participants the opportunity to subjectively reflect on their individual beliefs, attitudes and ideas while listening to and comparing their experience with those of other group members (Morgan 1998). Therefore, qualitative focus group methodology was selected as the most efficient and reliable design for this exploratory research to capture the shared experience of a group of people and to give voice to people without dementia in a carefully guided, non-threatening group discussions. 3
S. Kim et al.
Participants A convenience sample of 34 participants was recruited through an advertisement in a community newspaper distributed to homes in the Australian Capital Territory and Queanbeyan. Participants of the focus groups met two criteria: (a) age 50 years and older; and (b) without dementia diagnosis. These participants were recruited because this study aims to understand people without dementia about dementia risk reduction. Thirty four participants were assigned to six focus groups and the group size per focus group ranged between 5-7 people. This was within recommendations for optimum group size that is large enough to gain a variety of perspectives and small enough not to become disorderly or fragmented (Morgan 1998, Krueger & Casey 2000). Focus groups were conducted in a private room at the Australian National University. Participants were between 52-90 years old (mean = 6703, SD 885). All were White and majority were women (735%), married or in de facto relationship (647%) and retired (559%). Mean years of education was 145 years.
advertised as the research focus in the print recruitment material. The purpose of the study was explained in the information sheet provided to participants prior to attending the focus groups. Written informed consent was also obtained.
Data analysis The audio files from the focus groups were transcribed verbatim into a Word document. The long-table approach, an effective low-technology method that has been used in previous qualitative analyses, was used to identify themes and categorize results (Krueger & Casey 2000). It allows researchers to identify themes and categorize results by looking at participants’ answers to focus group questions and any other important comments said about the topic. Initial themes were determined a priori (from the focus group guide) and additional categories emerged from the analysis. Participants’ quotations were cut and pasted on separate sheets by the focus group guide question, theme and categories. The analyses of each focus group discussion were combined and each category was reviewed.
Data collection
Rigour
Focus groups were conducted in February 2011. Reflective and open ended questions were used to facilitate discussions and to allow group participants to talk freely. Questions used for the present analysis, which were drawn from the four constructs of behaviour change theories, include the following: (a) ‘literacy’ – what do you think are risk factors for dementia and how can you reduce your risk of developing dementia?; (b) ‘perceived susceptibility’ – what is your likelihood of developing dementia?; (c) ‘motivators and perceived benefits’ – what would motivate you to change your health behaviour and lifestyle to reduce your risk of dementia?; and (d) ‘perceived barriers’ – what would stop you from changing your health behaviour and lifestyle? The primary researcher was assisted by one of two research assistants in being group facilitators. All facilitators had clinical backgrounds as a clinical psychologist or a medical doctor. All focus group sessions lasted for about 60 minutes and were audio recorded for later analyses. After six focus groups had been conducted, data saturation was considered to have been achieved because participants kept returning to the same issues.
To ensure trustworthiness of qualitative data, we used open ended questions. Moreover, during analysis, two researchers each independently read and re-read the transcripts and identify themes and categories. At the end of analysing data, the researchers compared and contrasted themes and categories where debate and discussion were allowed.
Ethical considerations Approval for the study was obtained from the university ethics committee. ‘Dementia Risk Reduction Study’ was 4
Findings After reviewing the discussions, participants’ comments were categorized into the four a priori themes that cover everything raised during focus groups: (1) dementia and dementia risk factors literacy; (2) perceived susceptibility; (3) motivators and perceived benefits; and (4) perceived barriers.
Dementia and dementia risk factors literacy Participants identified many dementia risk factors accurately as a group. Age and genetics were the most recognized non-modifiable risk factors, whereas lack of cognitive engagement was the most recognized modifiable risk factor. Identified risk factors are listed in Table 1. The most common answer participants provided as ways to reduce one’s risk of developing dementia was increasing mental stimulation such as completing cross-word puzzles or Sudoku and learning something new. Other suggestions © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
Perception and attitudes towards dementia risk reduction
Table 1 Identified risk factors for dementia by participants. Demographics
Genetics
Medical conditions
Dietary factors
Toxic exposures
Psychosocial factors
Age Gender
Gene Family history
Diabetes Strokes/mini strokes High blood pressure Heart disease Head injury Obesity Meningitis Hyperthyroidism Atherosclerosis Anaesthetics
Vitamin B deficiency Poor diet
Pesticides Aluminium
Smoking Alcohol consumption Lack of social engagement Lack of cognitive engagement Lack of physical activities Drive (motivation) Trauma, stress Depression Anxiety Loss of control Drugs Removal from familiar setting
that reduce their risk of dementia included increasing or keeping physically active, socializing and maintaining a good diet. Younger participants also suggested giving up smoking and drinking, whereas older participants suggested having regular medical check-ups. Overall, participants had a reasonable knowledge of dementia risk factors and reported that majority of what they knew about dementia was learnt from the media. Some participants were more knowledgeable than others: . . .smoking like you said and too much alcohol consumption and bad food. . .they are finding more and more that physical exercise is keeping the brain working better, which is interesting. . .I certainly think there are hereditary factors in it. . .and then brain damage and anaesthetics for some people. . . (Group 4)
At an individual level however, some lacked knowledge on risk factors of dementia and also on dementia itself. One participant said: ‘Can I ask you a silly question to start with? What is dementia?’ (Group 3) Not surprisingly, dementia was also seen as a normal part of ageing by some participants: ‘. . .I think (dementia) is a natural process of ageing for a lot of people and it isn’t necessarily linked to a particular malfunction’ (Group 3). Some misbelief about risk factors and dementia were also found: ‘I did read a few reports that say smoking actually does reduce your risk of dementia’ (Group 2). Participants also expressed their uncertainty about dementia risk factors because of their conflicting experiences. The following quotes depict the participants’ confusion: ‘For some people it is to do with ageing but for some it is not. Because not only old people get dementia’ (Group 3). Another participant replied: I find it interesting that some people with a wonderful brain and who have done amazing work and they still develop dementia. They tell you if you keep using your © 2015 John Wiley & Sons Ltd
brain, you are less likely to get dementia . . . they are obviously still using their brain and they get it (Group 4).
Perceived susceptibility With regard to their likelihood of developing dementia, three groups of response types were formed. The first (fear) group, which included the majority of the participants, reflected those who avoided the question by expressing their fear instead, as illustrated by the following quote: ‘I am afraid of getting it. . .one of my greatest fears is that I will get dementia. I think the fear of getting dementia is great for me. I am really afraid of not being able to look after myself’ (Group 4). Another participant agreed by saying: ‘I hope to God that I don’t get it. If you know you got it, it must feel dreadful’ (Group 1). The second (rational) group, consisting mainly of men, included those who rationally estimated their likelihood of dementia by comparing their own behaviour and characteristics (what they do or do not do and what they have or do not have) against the risk factors: ‘. . .I don’t drink a great deal and I don’t smoke a lot. . .I’m not particularly intellectually active but probably about average. I would rate my chance probably less than 50% but it’s only a guess’ (Group 2). However, not everyone in the rational group calculated their chance of developing dementia correctly because of incorrect information they held: ‘The longer you live without it I think, the less chance you have getting it. You know, once you get to about 70 or 75 or something (your chance is slimmer)’ (Group 4). The third (cynical) group included people who did not believe in risk factors. Instead, they believed that their luck played a part and that there were no guarantees whether they would or would not develop dementia. This reflected their uncertainty about the cause of dementia: ‘I think it is 5
S. Kim et al.
a bit like a bus around the corner. You might be hit by the bus, but chances are you won’t. . .and dementia is around the corner’ (Group 4).
out and said Hazel (former PM’s wife) got it and this is what we’re doing. . .because I think when a high profile person like that and their family comes out and talks about it, it’s really good for the rest of population (Group 2).
Motivators and perceived benefits to lifestyle change Fear of developing dementia was the main motivator to lifestyle and behavioural changes: ‘If someone says to me if you don’t change your lifestyle you are going to be dead in 5 years (with dementia) I would say OK I would change it’ (Group 3). Groups also believed that education and having more information available on the media that increases peoples’ awareness of and understanding of dementia, rather than simply telling people what they have to do, would motivate people to change: ‘Education is the only way, education through TV or whatever. . .every avenues possible. . .increase understanding, not just blasting people with this is what you should do’ (Group 5). Other motivators for behavioural and lifestyle changes that were cited as having worked in the past included social pressure and banning smoking in office buildings: ‘Social pressure can cause you to change your lifestyle like in your working environment. It became unacceptable to smoke in your office’ (Group 5). Work place and family support were also identified as motivators to change health behaviour and lifestyle: What would motivate me to drop my bad habits. . .I think being able to have opportunities to work part-time and what they call transition to retirement. . .that would make me do more gentle exercises and probably encourage me to go and swim. . .having the opportunities in time to do something little more gentle, yes I would like to be able to. . .if the workforce was more accepting of (transition) (Group 6).
Perceived barriers to lifestyle change The most commonly identified barrier to behavioural and lifestyle changes from the focus groups was the lack of knowledge about dementia: . . .all the signs have been there for years but they just haven’t realized what it was. . .I think a lot of people either don’t recognize the symptoms or they are in denial. They just say she is a bit forgetful or little bit difficult. . .I am a great campaigner for AD or dementia awareness because I think if people are more aware of symptoms and what they could do to help themselves and person they are dealing with, the whole thing would be happier place. . .I’ve got to hand it to Hawke (former Australian prime minister) who came
6
Participants also pointed to research findings that do not provide clear relationships between causes and dementia as another barrier: ‘I think if it is clearly defined which activities contribute towards preventing it, I would have no trouble at all giving up the ones we are at and adopting the one we ought’ (Group 2). Another participant also stated that: ‘if you can clearly see (the cause and effects) you immediately change your behaviours. But you can’t’ (Group 6). Participants also have shown the distrust in experts, which discourages them from following experts’ recommendations to make behavioural and lifestyle changes: . . .experts do not agree on what we should do to prevent the onset of dementia. That’s why people like you are still doing the research. . .I would like to be more aware of more definite things about dementia. It’s all so vague (Group 4).
Giving up enjoyment such as drinking was also reported as barriers along with having poor physical conditions: ‘. . .but (with things) I really enjoy. . .like food. . .that would be much harder (to change/give up)’ (Group 2). Another participant added: ‘. . .if you give up smoking and booze and everything else and you’re miserable, what’s the point?’ (Group 2). Younger participants who are currently working and have children living with them stated that having responsibilities of having to take care of family members and not having support from family and work place were barriers: ‘Well I am not sure how much more I can reduce (my risk of dementia) because of certain circumstances get in the way, for example caring bits’ (Group 1).
Discussion The present qualitative study is the first of its kind to give a voice to people without dementia about dementia risk reduction. Findings suggest that the high dementia literacy was shown in participants at the group level which was consistent with a previous study examining dementia literacy of Australians (Low & Anstey 2009). However, the evidence of high dementia literacy shown at the group level might have been because of a few knowledgeable participants in each group as the range of data generated through the social interaction of the group are often deeper and richer than those obtained from one to one interviews (Thomas et al. 1995).
© 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
The majority in each group lacked knowledge about dementia and dementia risk factors. In particular, participants seemed to lack knowledge on what dementia was. Some considered Alzheimer’s disease (AD) different from dementia although AD is the most common type of dementia (Alzheimer’s Association’s 2009). In addition, some were not aware that there are many types of dementia such as vascular dementia, drug induced dementia and frontal lobe dementia. This result highlights the importance of educating the public and suggests that in depth education on dementia targeting the broader population is required. It should also be noted that a participant’s ability to list risk factors associated with dementia did not necessarily mean that they had good knowledge of how these risk factors impact on them. Some participants expressed their uncertainty about their responses saying that they thought they had heard it from the media, but were unsure. Their responses were not profound and were frequently based on their indirect experiences of dementia through demented family members or friends. Of all the listed risk factors, old age, genetics and lack of mental stimulation were thought to contribute the most to a person developing dementia. Our findings are congruent with previous dementia literacy (Low & Anstey 2009), who showed that the most frequently suggested methods for dementia risk reduction were mental exercise, eating healthily, physical exercise and socializing. In this study, we have found that the majority of participants feared developing dementia, which is contradictory to the findings of Yeo et al. (2007), where they found that most responders (69%) did not worry about developing dementia. Roberts and colleagues also found that only 294% of participants expressed active worry (2014). Personal experience with a relative who has dementia increases personal vulnerability (Williams et al. 2010) and almost all participants in the current study had indicated that they had an indirect experience of dementia through either family members or friends. The participants in this study therefore might have had high awareness of what it is like to have dementia. Yeo and colleagues also found that 72% of responders did not have family members with dementia but if responders had a family member with dementia, they were more likely to think of dementia. This correlated with our study findings. The main barrier for behavioural and lifestyle change identified by participants was the participants’ lack of knowledge. This again highlights the importance of publichealth education about dementia and what can be done to reduce their risk of developing dementia. This is because inaccurate information can play a big role in making a © 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
decision on whether to make behavioural and lifestyle changes to prevent dementia. The main motivators for changing health behaviour and lifestyle for dementia risk reduction were education and fear of developing dementia. It seems that when the fear of developing dementia is larger than the pleasure of doing something that might heighten their risk of dementia (e.g. smoking), changes might occur towards a positive and healthier lifestyle. Individuals are not, however, a homogenous group and have different barriers and motivators and different levels of knowledge on dementia should be considered when developing interventions. Individually tailored interventions therefore would be more successful than a ‘one size fits all’ approach as they address the factors most relevant to a given individual. Previous research on HIV prevention targeting men who have sex with men supported the efficacy of the individually tailored intervention used (Chesney et al. 2003). Their results reinforced the importance of a tailored approach where structured modules are selected and implemented in a manner consistent with individuals’ unique characteristics which predispose them to engage in risk behaviour. Nurses and other healthcare professionals are an essential source of information for people without dementia but who are concerned about their cognitive decline or developing dementia. Healthcare professionals are the first point of contact for the majority of people and they are more likely to be aware of the patients’ medical conditions and lifestyle patterns. As such, they will be able to provide people without dementia individualized evidence-based information and recommendations on dementia risk reduction. Healthcare professionals especially can be of help because there are contradictory or confusing evidence suggested on risk factors and dementia unlike other risk behaviours leading to chronic diseases such as smoking and lung cancer, 90% of all lung cancer cases are directly attributed to smoking (Huxley et al. 2007).
Limitations In interpreting the results of this qualitative research, several study limitations should be noted. The participants in this study were convenience samples, with higher education levels (mean years of education was 145 years) and who were concerned or care about their health and well-being. Participants’ higher than average level of education might have led to higher than average level of general health knowledge in the sample. Therefore, the findings in this study might not be as accurate a representation of the Australian population as it would perhaps be. In addition, findings presented in this exploratory study were developed 7
S. Kim et al.
based on free discussions among participants. It is important to stress that these results are restricted to the associations the participants made in this context and the group studied. Furthermore, although the data saturation was considered to have been achieved with the current participants, a larger number of participants from different backgrounds might have been more representative of the broader public. Because of the recruitment method used in this study, we might have only attracted participants who were eager to learn about dementia risk reduction and eager to change accordingly. Therefore, population representative sample with different degrees of dementia interest should be sought in future recruitment.
Conclusion Despite these limitations, these results offer insights into people without dementia on dementia risk reduction. This study complements and adds to the findings of previous research in the area of dementia literacy/knowledge. This study is an essential first step, because it provides a greater understanding of the barriers and motivators to change health behaviours and lifestyle for dementia risk reduction. The information gathered from these focus groups can identify determinants for behaviour and lifestyle changes for dementia risk reduction. This information can then be used in developing effective and personalized community-based interventions as different techniques will address different causal determinants of behaviour change. In developing effective dementia risk reduction interventions, it is incumbent on healthcare providers to consider not only what the public knows about dementia, but how healthcare professionals can motivate people from changing their lifestyle and health behaviours. Healthcare professionals need to incorporate the knowledge of health beliefs and attitudes of people without dementia into health promotion strategies to facilitate the development and communication of health promotion messages in an effective manner. Nurses and other healthcare professionals need to be sensitive to reasons as to why some people might not change their lifestyle and health behaviour despite the knowledge on dementia risk reduction. Conversely, healthcare professionals also need to understand why some people would change their lifestyle despite the number of barriers to health behaviour and lifestyle changes for dementia risk reduction. Greater public-health promotion and education about risk and protective factors for dementia are also necessary to increase dementia health literacy and to reduce overall dementia prevalence. Insights into people without dementia also highlight the importance of the role healthcare 8
professionals play in educating middle-aged and older adults in both community and healthcare settings, about risk and protective factors of dementia. As nurses and other healthcare professionals are the first point of contact for the majority of people when they are concerned about their health, healthcare professionals can help people without dementia reduce their risk of developing dementia and ultimately reduce overall dementia prevalence.
Acknowledgements We thank the participants who have helped us make this research possible. We are grateful to Jennifer Young and Pushpani Herath for their assistance in conducting focus groups and coding the focus group transcripts.
Funding The authors disclosed receipt of the following financial support for the research, authorship and or publication of this article: [Dementia Collaborative Research Centre PhD Scholarship to S.K.; Australian Research Council Centre of Excellence in Population Ageing Research (CEPAR) Supplementary Scholarship to S.K.; CEPAR (grant no CE110001029) to K.S.; and National Health and Medical Research Council Fellowship (grant no 1002560) to K.A.].
Conflict of interest The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria (recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
References Ajzen I. (1991) The theory of planned behaviour. Organizational behaviour and Human Decision Processes 50, 179–211. Ajzen I. & Fishbein M. (1980) Understanding Attitudes and Predicting Social. Prentice-Hall, Englewood Cliffs, NJ. © 2015 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Akbaraly T., Porter F., Fustinoni S., Dartigues J., Artero S., Rouaud O., Touchon J., Ritchie K. & Berr C. (2009) Leisure activities and the risk of dementia in the elderly: results from the Three-City Study. Neurology 73, 854–861. Alzheimer’s Association (2009) Alzheimer’s disease facts and figures. Alzheimer’s and Dementia 5, 234–270. Alzheimer’s Disease International (2010) World Alzheimer Report 2010: The Global Economic Impact of Dementia. Alzheimer’s Disease International (ADI), London, UK. Alzheimer’s Disease International (2014) World Alzheimer Report 2014: Dementia and Risk Reduction. An Analysis of Protective and Modifiable Factors. Alzheimer’s Disease International (ADI), London, UK. Alzheimer’s Society (2009) Counting the Cost: Caring for People with Dementia on Hospital Wards. Alzheimer’s Society, London, UK. Anstey K., Von Sanden C., Salim A. & O’kearney R. (2007) Smoking as a risk factor for dementia and cognitive decline: a meta-analysis of prospective studies. American Journal of Epidemiology 166, 367–378. Anstey K., Lipnicki D. & Low L.F. (2008) Cholesterol as a risk factor for dementia and cognitive decline: a systematic review of prospective studies with meta-analysis. American Journal of Geriatric Psychiatry 16, 343–354. Anstey K., Mack H. & Cherbuin N. (2009) Alcohol consumption as a risk factor for dementia and cognitive decline: meta-analysis of prospective studies. American Journal of Geriatric Psychiatry 17, 542–555. Anstey K., Cherbuin N., Budge M. & Young J. (2011) Body mass index in midlife and late-life as a risk factor for dementia: a metaanalysis of prospective studies. Obesity Reviews 12, e426–e437. Arai Y., Arai A. & Zarit S. (2008) What do we know about dementia?: a survey on knowledge about dementia in the general public of Japan. International Journal of Geriatric Psychiatry 23, 433–438. Australian Institute of Health and Welfare (2012) Dementia in Australia. AIHW, Canberra, ACT. Ayalon L. & Arean P. (2004) Knowledge of Alzheimer’s disease in four ethnic groups of older adults. International Journal of Geriatric Psychiatry 19, 51–57. Bandura A. (1997) Self-efficacy: The Exercise of Control. Freeman, New York. Barnes D. & Yaffe K. (2011) The projected effect of risk factor reduction on Alzheimer’s disease prevalence. The Lancet Neurology 10, 819–828. Chesney M., Koblin B., Barresi P., Husnik M., Celum C., Colfax G., Mayer K., Mckiman D., Judson F., Huang Y., Coates T. & Team T. (2003) An individually tailored intervention for HIV prevention: baseline data from the EXPLORE study. American Journal of Public Health 93, 933–938. Chung S., Mehta K., Shumway M., Alvidrez J. & Perez-Stable E. (2009) Risk perception and preference for prevention of Alzheimer’s disease. Value in Health 12, 450–458. Clare L., Goater T. & Woods B. (2006) Illness representations in early-stage dementia: a preliminary investigation. International Journal of Geriatric Psychiatry 21, 761–767. Coley N., Andrieu S., Gardette V., Gillette-Guyonnet S., Sanz C., Vellas B. & Grand A. (2008) Dementia prevention:
© 2015 John Wiley & Sons Ltd
Perception and attitudes towards dementia risk reduction
methodological explanations for inconsistent results. Epidemiologic Reviews 30, 35–66. Connell C., Scott Roberts J. & McLaughlin S. (2007) Public opinion about Alzheimer disease among blacks, hispanics, and whites: results from a national survey. Alzheimer Disease and Associated Disorders 21, 232–240. Connell C., Scott Roberts J., McLaughlin S. & Akinleye D. (2009) Racial differences in knowledge and beliefs about Alzheimer disease. Alzheimer Disease and Associated Disorders 23, 110– 116. Flicker L. (2009) Life style interventions to reduce the risk of dementia. Maturitas 63, 319–322. Fratiglioni L. (1996) Epidemiology of Alzheimer’s disease and current posibilities for prevention. Acta neurologica Scandinavica. Supplementum 165, 33–40. Fratiglioni L., Paillard-Borg S. & Winblad B. (2004) An active and socially integrated lifestyle in late life might protect against dementia. The Lancet Neurology 3, 343–353. Huxley R., Jamrozik K. & Lam T. (2007) Impact of smoking and smoking cessation on lung cancer mortality in the Asia Pacific region. Americal Journal of Epidemiology 165, 1280– 1286. Janz N. & Becker M. (1984) The health belief model: a decade later. Health Education Quarterly 11, 1–47. Krueger R. & Casey M. (2000) Focus Groups. A Practical Guide for Applied Research. Sage, Thousand Oaks, CA. Lautenschlager N., Cox K., Flicker L., Foster J., Van Bockxmeer F., Xiao J., Greenop K. & Almeida O. (2008) Effect of physical activity on cognitive function in older adults at risk for Alzheimer disease: a randomized trial. JAMA 300, 1027– 1037. Low L.F. & Anstey K. (2009) Dementia literacy: recognition and beliefs on dementia of the Australian public. Alzheimer’s & Dementia 5, 43–49. Michie S., Johnston M., Francis J., Hardeman W. & Eccles M. (2008) From theory to intervention: mapping theoretically derived behavioural determinants to behaviour change techniques. Applied Psychology: An International Review 57, 660–680. Morgan D. (1998) The Focus Group Guidebook. Book 1. The Focus Group Kit. Sage, Thousand Oaks, CA. Noar S., Benac C. & Harris M. (2007) Does tailoring matter? Meta-analytic review of tailored print health behaviour change interventions. Psychological Bulletin 133, 673–693. Rabiee F. (2004) Focus-group interview and data analysis. Proceedings of the Nutrition Society 63, 655–660. Roberts J., Larusse S., Katzen H., Whitehouse P., Barber M., Post S., Relkin N., Quaid K., Pietrzak R., Cupples L., Farrer L., Brown T. & Green R. (2003) Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer Disease and Associated Disorders 17, 86–93. Roberts J., McLaughlin S. & Connell C. (2014) Public beliefs and knowledge about risk and protective factors for Alzheimer’s disease. Alzheimer’s & Dementia 10, S381–S389. Saczynski J., Beiser A., Seshadri S., Auerbach S., Wolf P. & Au R. (2010) Depressive symptoms and risk of dementia: the Framingham Heart Study. Neurology 75, 35–41.
9
S. Kim et al. Scarmeas N., Luchsinger J., Schupf N., Brickman A., Cosentino S., Tang M. & Stern Y. (2009) Physical activity, diet, and risk of Alzheimer disease. JAMA 302, 627–637. Thomas L., Mac Millan J., McColl E., Hale C. & Bond S. (1995) Comparison of focus group and individual interview methodology in examining patient satisfaction with nursing care. Social Sciences in Health 1, 206–219.
Williams C., Tappen R., Rosselli M., Keane F. & Newlin K. (2010) Willingness to be screened and tested for cognitive impairment: cross-cultural comparison. American Journal of Alzheimer’s Disease and Other Dementias 25, 160–166. Yeo L., Horan M., Jones M. & Pendleton N. (2007) Perceptions of risk and prevention of dementia in the healthy elderly. Dementia and Geriatric Cognitive Disorders 23, 368–371.
The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of evidence-based nursing, midwifery and health care by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. JAN publishes research reviews, original research reports and methodological and theoretical papers. For further information, please visit JAN on the Wiley Online Library website: www.wileyonlinelibrary.com/journal/jan Reasons to publish your work in JAN:
• High-impact forum: the world’s most cited nursing journal, with an Impact Factor of 1·527 – ranked 14/101 in the 2012 ISI Journal Citation Reports © (Nursing (Social Science)).
• Most read nursing journal in the world: over 3 million articles downloaded online per year and accessible in over 10,000 libraries worldwide (including over 3,500 in developing countries with free or low cost access).
• • • •
10
Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jan. Positive publishing experience: rapid double-blind peer review with constructive feedback. Rapid online publication in five weeks: average time from final manuscript arriving in production to online publication. Online Open: the option to pay to make your article freely and openly accessible to non-subscribers upon publication on Wiley Online Library, as well as the option to deposit the article in your own or your funding agency’s preferred archive (e.g. PubMed).
© 2015 John Wiley & Sons Ltd
