Abstract
Background:
Dementia, with the most common form being Alzheimer’s disease, is a global health issue and lifestyle-based strategies may reduce risk. Individuals with a family history of dementia are an important target group, but little is known about their attitudes and perceptions of dementia risk reduction.
Objective:
To elucidate the attitudes to and key considerations for multidomain lifestyle-based dementia prevention strategies in middle-aged Australians with a family history of dementia.
Methods:
Twenty participants (80% female; age range 47–65 years), undertook semi-structured phone-based interviews. Inductive thematic analysis of interview transcripts was conducted. Hierarchical coding frames and illustrative quotes were compiled and critically challenged until a final set of themes was produced.
Results:
Some participants expressed a positive attitude toward lifestyle-based dementia prevention. Reasons related to wanting to future proof, believing that risk reduction is relevant at all life stages and/or that there is always room for improvement. Other participants had a negative attitude, expressing that they were already following a healthy lifestyle, did not feel it was relevant to them yet, and/or held a deterministic view that dementia is random. Important considerations congregated on the themes of being tailored/personalized, taking a holistic approach, and involving small, achievable steps.
Conclusions:
In individuals with a family history of dementia, a positive attitude to dementia prevention holds promise for intervention efforts, but in individuals expressing negative attitudes, further education and individual-level counselling may be warranted. Multidomain lifestyle-based preventive strategies also need to be tailored to the needs of key target groups to optimize appeal and effectiveness.
INTRODUCTION
Dementia is a significant global health issue impacting approximately 50 million people around the world [1]. Incident dementia cases are rapidly increasing and are projected to triple by 2050 [1]. As there are currently no curative treatments for dementia, increased focus has been on the proactive management of modifiable risk factors to delay or slow onset or progression of the disease [1]. Several studies have demonstrated links between lifestyle-related risk factors such as tobacco use, excessive alcohol consumption, physical inactivity, and unhealthy diet, with the development of cognitive impairment and dementia [2–8]. This is supported by a 2020 Lancet Commission report, which found that up to 40% of dementia cases may be attributable to 12 modifiable risk factors including smoking, physical inactivity and excess alcohol consumption [9]. To date, much of this research has been focused on individual contributions of these risk factors; however, there is increasing evidence that multidomain strategies to prevent cognitive decline and dementia may be more effective due to clustering of lifestyle-related risk factors [10–13].
A 2021 Cochrane review consolidated randomized controlled trials employing multidomain lifestyle-based strategies for the prevention of dementia and cognitive decline [14]. Nine interventions were captured in the review, including the large-scale FINGER, MAPT, and PreDIVA trials [14]. Overall, no beneficial effect was found for dementia but only two trials included incident dementia as an outcome measure [14]. There was some evidence to suggest a benefit of multidomain interventions on cognitive function; however, findings are difficult to synthesize due to the large heterogeneity in intervention characteristics, e.g., combinations of risk factors targeted, length of intervention, and characteristics of participants (healthy/at-risk). Thus, further research is still needed to understand how multidomain lifestyle interventions could be improved to increase efficacy of risk reduction for cognitive decline and dementia. Specifically, more knowledge is required around attitudes towards multidomain lifestyle-based approaches to reducing risk of cognitive decline and dementia, important preferences and considerations for lifestyle-based risk reduction approaches, and potential barriers and facilitators to optimizing lifestyle-related behaviors for brain health. Increasing knowledge in these areas is important to facilitate the design of strategies that can overcome any resistance/hesitation to engagement. This, along with ensuring strategies are designed according to the preferences of key target groups, may result in improved appeal and adherence, potentially leading to greater risk reduction potential.
Previous qualitative work has been conducted to explore knowledge, perceptions, behaviors, and motivations around dementia and associated risk reduction in a range of different populations. A focus group study of 34 healthy Australian adults aged 50–90 years found participants to have good knowledge of both modifiable and non-modifiable risk factors at a group level, but with variable knowledge at the individual level, with some individuals lacking knowledge on risk factors or dementia itself [15]. Primary motivators for adopting a healthier lifestyle were fear of developing dementia and the need to improve dementia knowledge, whereas a major barrier was a lack of knowledge on dementia risk factors [15]. A semi-structured interview study in a subset of 15 community-dwelling Finnish participants aged 65 + years also identified that individual-level knowledge of risk factors for cognitive disorders was limited, and that feelings of fear, concern, hopelessness and misery, with respect to such conditions, were frequently expressed by participants [16]. Family history and/or indirect experiences of cognitive disorders was also a recurring theme in this study and appeared to have disparate impacts on attitude towards prevention across participants [16]. A further study employing content analysis of a UK-based online survey explored motivation to change lifestyle for dementia risk reduction in 653 adults aged 50 + years [17]. This study identified a family history of dementia and feeling like they already had a healthy lifestyle as motivating factors for behavior change. However, having a role as a carer was a key barrier due to lack of time to dedicate to one’s health [17]. The aforementioned studies focus on a wide range of ages, which is applicable given the evidence indicates that it is never too early or too late for preventative action to reduce risk of cognitive decline and/or dementia [9]. To build on this, however, it is relevant to home in on the attitudes of key age groups to ensure that strategies can be optimized to meet the needs and attitudes of such individuals. Targeting individuals in midlife is vital as several modifiable risk factors observed during this age bracket, e.g., obesity and heavy alcohol consumption, appear to be strong risk factors for dementia [9].
More recently, research has explored the knowledge, beliefs, and attitudes towards dementia risk reduction approaches, specifically in individuals with a family history of dementia. This is an important area of research as such individuals have a greater predisposition for experiencing cognitive decline and dementia themselves and at an earlier age of onset [18–23], hence representing a key target group for early intervention. To date, one focus group study in Dutch adults aged 26 to 61 years [24], and one cross-sectional survey study in adults aged 48 to 96 years from the United States [25], have been conducted.
Further research is required to explore attitudes to, and considerations for, lifestyle-based approaches to reduce risk of cognitive decline and dementia in middle-aged adults with a family history of dementia, specifically in an Australian context. Such work can inform future preventive strategies by improving appeal and adherence, leading to more significant risk reduction potential, in this important at-risk population subgroup. Therefore, this study aimed to elucidate the attitudes to and key considerations for multidomain lifestyle-based dementia prevention strategies in middle-aged Australians (45–65 years) with a family history of dementia.
METHODS
Methodology
A qualitative interview approach was chosen as it aligns with the Health Belief Model (HBM) [26] to facilitate in-depth exploration of individuals’ health behaviors. This method permits a thorough exploration of beliefs, attitudes, and social influences, aligning with the model’s holistic approach. Qualitative interviews provide flexibility to capture the complexity of factors influencing health behaviors, making it a suitable choice for our research [27]. We employed the completed consolidated criteria for reporting qualitative research (COREQ) checklist [28] to ensure comprehensive and transparent reporting of our research. The intention of the COREQ checklist is to enhance the robustness, thoroughness, and trustworthiness of interview and focus-group studies. Our completed COREQ checklist is available in Supplementary File 1.
Sampling and recruitment
Participants were middle-aged (45–65 years) adults with a family history of dementia (i.e., any genetic first or second generation relative) and self-reported to be cognitively healthy (i.e., free from formal diagnosis of dementia and/or absence of subjective cognitive impairment). A database of individuals screened for previous Deakin University (Melbourne, Australia) studies and consented to be contacted for future research purposes, was used as the basis for recruitment. This database was systematically divided into four separate groups, from which systematically derived groups of individuals was selected for a staggered email recruitment process. An email outlining the purpose and eligibility criteria of the study was sent out to individuals. A convenience sampling approach was then employed, whereby interested participants contacted the researchers by phone or email and were screened for eligibility. If participants were eligible to participate, they were sent a link to an online Plain Language Statement and Consent form. This process continued until the desired sample size was reached. We determined our sample size by examining pertinent research in the field that had reported reaching data saturation. A recent systematic review of empirical studies on sample sizes for data saturation in qualitative research supports our chosen sample size [29]. It found that, on average, 9–17 interviews, with a mean of 12-13 interviews, consistently achieved saturation, even when various methods for assessing data saturation were used [29].
Ethics approval
Ethics approval was obtained from the Human Ethics Advisory Group (Health) from Deakin University (approval number: HEAG-H 99_2019), and informed consent was obtained prior to conducting the interviews (Supplementary File 2). This study was carried out in accordance with the 1975 Declaration of Helsinki for medical research involving human subjects.
Data collection
Data collection was conducted during March and April 2020. Data were collected using phone-based semi-structured interviews, and aside from initial demographic-based background questions, all interview questions were open-ended. One-on-one phone interviews were chosen to avoid logistical barriers for participants and because there is evidence that this method can negate any potential issues of power imbalance and interviewer bias [30]. With more control over the conversation given to the interviewee, this encourages the interviewee to speak more openly and freely. Furthermore, by blinding interviewers to the visual traits of participants, unwanted interviewer bias can be avoided [30]. The HBM [26] was used to develop the semi-structured interview protocol. Key dimensions of this framework (i.e., perceived susceptibility, perceived severity, perceived benefits, perceived barriers) were used to guide the development of topics covered. Topics included perceptions and beliefs around healthy lifestyle, barriers and facilitators to following a healthy lifestyle, existing knowledge on the links between lifestyle and brain health, attitudes to lifestyle change for brain health, and attitudes to multidomain lifestyle approaches for optimizing brain health (Supplementary File 3). At the beginning of the interview, participants were also asked the following demographics-related questions: date of birth, education level, employment status and marital status. One researcher (SD) conducted all interviews. Interviews were carried out in English and audio recorded with participants’ permission. After the 20 interviews, data saturation was considered to have been achieved as participants kept converging on the same ideas. To determine data saturation, we utilized a ‘code meaning’ approach, signifying that saturation was attained when an in-depth comprehension of each code, including the identification of various nuances and dimensions through consecutive interviews, was achieved [29]. At the conclusion of the interviews, participants were given a $30 voucher in appreciation of their time.
Data analysis
NVivo Transcription software was used for automated transcription of audio files. All transcripts were then reviewed manually by SD and any personal details were de-identified. The average interview duration was 26 min (range: 13–38 min). Inductive thematic analysis was employed to identify common and unique patterns that extended across the entire set of interviews. The process of thematic analysis was guided by steps described by Braun and Clarke [31]. The process began with data familiarization where each interview was read and listened to again to get a broad sense of the themes. Data coding was completed manually, with Nvivo12 software (QSR International) employed for data storage and organization purposes. Data coding was conducted in an inductive manner; whereby no pre-defined coding frame was employed. The codes were reviewed in a reflexive iterative manner [31] to generate themes until no new findings were identified from the texts. Hierarchical coding frames were produced by SD, and these coding frames, along with illustrative quotes, were then reviewed by two other members of the research team (ST and CM) who critically challenged the data until a consensus was reached. The final set of themes and illustrative quotes were reported.
RESULTS
Twenty individuals were included in this study and participant characteristics are presented in Supplementary Table 1. Mean age was 57 years (range 47–65 years), 80% were women (n = 16), and 60% (n = 12) had a tertiary level of education. Overall, 30% were employed on a full-time basis (n = 6), 35% part-time (n = 7), 10% not working (n = 2), and 25% retired (n = 5). Thirty-five percent (n = 7) were married or in a de facto relationship, 45% (n = 9) were single, and 20% (n = 4) categorized themselves as divorced.
A variety of health behaviors were raised by participants as contributing to a healthy lifestyle, including diet/healthy eating, exercise/physical activity, socialization/connection, sleep, balance/everything in moderation, responsible drinking, good mental health, limited stress, intellectual stimulation/cognitive activity, sense of purpose/positive outlook on life, having hobbies/passions, limiting drug use, avoiding sedentary behavior, faith, maintaining a healthy weight, not smoking, and taking care of physical health (e.g., regular appointments with dentist, optometrist, etc.). In respect to participant perceptions of their individual lifestyles, 60% (n = 12) perceived that they live a ‘healthy’ or ‘reasonably healthy’ lifestyle, while 15% (n = 3) perceived their lifestyle as ‘moderately healthy’, and 20% (n = 4) as ‘unhealthy’.
Key themes
After coding and reviewing all interview transcripts, nine overarching themes emerged, aligned to two disparate question domains. These are described in detail below, and corresponding illustrative quotes are provided in Tables 1 and 2.
Themes and illustrative quotes for the question domain ‘Attitudes to multidomain lifestyle approaches to dementia prevention’
Themes and illustrative quotes for the question domain ‘Important considerations for multidomain lifestyle approaches to dementia prevention’
Question domain: Attitudes to multidomain lifestyle approaches to dementia prevention
When prompted to consider if they felt like they might benefit from, or have any interest in, participating in dementia prevention strategies targeted at optimizing lifestyle behaviors, some participants had a positive attitude, expressing that they either definitely or somewhat felt that this is something they would benefit from and/or have interest in partaking in. Participants’ reasoning congregated into three key themes discussed in detail below, with illustrative quotes presented in Table 1.
Always room for lifestyle improvement
A prominent and reoccurring reason expressed by participants as to why they felt they might benefit from lifestyle-focused dementia prevention strategies is that they felt there is always some aspect of their lifestyle that could be improved upon. This attitude was not only evident for individuals who felt their lifestyle was unhealthy but also for some individuals who perceived that they already follow a healthy or mostly healthy lifestyle.
Dementia prevention relevant across the life-course
Participants were also asked to reflect on whether they felt that a lifestyle-targeted dementia prevention program is something that is relevant at their current life stage. Some participants felt that it was relevant, and a specific reoccurring concept was that it may be relevant at all life stages.
Motivated to future proof against dementia
Some participants homed in on the concept that they were keen to act now to ‘futureproof’ their bodies and brains against future risk of dementia. Some individuals reflected on the particular importance of this from a personal standpoint because of their family history or provided more general reasoning related to the importance of acting early before “leaving it too late” or “waiting until we’re too old”. Others discussed this in a broader sense that it makes sense for individuals to start taking preventive action early to reduce risk later down the track.
Other participants expressed a negative or hesitant attitude to the concept of a dementia prevention program targeted at optimizing lifestyle habits. Reasons congregated into three key themes, discussed below with illustrative quotes in Table 1.
Already following a healthy lifestyle
Other participants expressed a negative attitude to the concept of a dementia prevention program targeted at optimizing lifestyle habits, one reason being because they felt that they wouldn’t benefit as they were already engaging in a healthy lifestyle. The point around already following a healthy lifestyle and doubt around whether any further improvement would have any meaningful impact on reducing the risk of dementia in the future was prominently discussed by a couple of participants and hence, we identified this as a theme named ‘Already following a healthy lifestyle’.
Perception that dementia prevention is not relevant at current life stage
Other participants expressed that they felt dementia prevention strategies weren’t relevant to them yet. This may have been coming from a place of denial or the sense that individuals had too many competing demands/lack of time to have really given the topic too much thought.
Deterministic view that dementia is random
Another point that was raised was the opinion that who does or does not develop dementia comes down to chance and, therefore, that trying to make lifestyle changes to reduce risk may be futile.
Question domain: Important considerations for multidomain lifestyle approaches to dementia prevention
When prompted to think about what they felt would be important to them or others in terms of multidomain lifestyle-based approaches to dementia prevention, three overarching themes emerged: the importance of a holistic/integrated approach, an approach that is tailored/individualized, and incorporating small achievable steps/goals rather than making any drastic changes.
Holistic lifestyle-based dementia prevention strategies
When participants were asked to reflect on key aspects or considerations that they think would be important in a multidomain lifestyle approach to dementia prevention, a dominant theme of ensuring that approaches are holistic/integrated –incorporating multiple lifestyle factors, was identified. This idea often aligned with a recognition that lifestyle behaviors are all inextricably linked, and therefore, they thought it logical and/or preferred any preventive strategies to take this into account.
Tailored/personalized lifestyle-based dementia prevention strategies
Another key consideration that was raised across several interviews was the importance of multidomain lifestyle prevention approaches being tailored/personalized to the individual. Some participants discussed in a general sense that everyone has their own distinct patterns of behaviors so a one-size-fits-all approach is likely not going to be effective. Others took a more personal perspective, discussing that such a program would only be appealing to them personally if it was tailored to them. The issue of efficacy was also raised by some participants, discussing that personalization is important to make any tangible difference to an individual’s level of risk.
Lifestyle-based dementia prevention strategies involving small, achievable steps
Some participants also highlighted the importance of multidomain lifestyle-based preventive approaches to incorporate small, achievable steps, as opposed to trying to elicit drastic changes. Some participants raised the idea of taking an incremental approach, whereby individual behaviors are tackled one at a time, rather than opting for a complete lifestyle shift from the outset. This was often raised in conjunction with the discussion of the need for a clear goal as a facilitator to behavioral change.
DISCUSSION
This study identified that in a sample of middle-aged Australian adults with a family history of dementia, some participants expressed a positive attitude toward lifestyle-based preventive strategies. Reasons related to wanting to future proof their minds, believing that risk reduction is relevant across the life-course and/or that there is always room for improvement. In contrast, some participants had a negative attitude, expressing that they were already following a healthy lifestyle, that they did not feel it was relevant at their current stage of life, and/or held a deterministic view that dementia is random. This study also explored important considerations for multidomain lifestyle approaches to dementia prevention, which congregated on the themes of being tailored/personalized, taking a holistic approach, and involving small, achievable steps.
Attitudes to multidomain lifestyle approaches to dementia prevention
A mix of positive/receptive attitudes and negative/hesitant attitudes towards engaging in multidomain lifestyle approaches to dementia prevention, were observed. The participants of this study were individuals with a family history of dementia, and previous evidence supports that this exposure can have disparate effects on attitudes towards prevention [16]. This work demonstrated that individuals with a family history and/or indirect experience of cognitive disorders could have opposing impacts on attitudes—either with participants expressing uncertainty over risk factors and the possibility of prevention or it could elicit feelings of fear resulting in a higher level of motivation towards engaging in preventative strategies [16].
That several participants in the current study expressed negative or hesitant attitudes toward lifestyle-based dementia prevention strategies is a concern given the lack of cure for dementia and the importance of targeting modifiable risk factors for reducing risk [1]. Understanding the underlying reasons for these attitudes is vital to ensure that intervention efforts can be designed to assist in shifting attitudes/perceptions and encourage such individuals to be more receptive to making lifestyle improvements to lower their risk of dementia. Some participants expressed a deterministic view that dementia is random and any action they were to take to improve their lifestyle would not be beneficial (Theme: “Deterministic view that dementia is random”). However, recent research indicates that optimizing lifestyle habits elicits benefits on cognitive health, even if an individual is genetically predisposed to dementia [32, 33]. Therefore, further education of individuals with a family history of dementia may increase awareness that incorporating healthy lifestyle changes is important and can have a positive impact on lowering dementia risk. This is also supported by the HBM, whereby to engage in particular behavior/s we need to hold the belief in the effectiveness of said behavior/s for lowering disease/illness risk [26].
Another reason expressed by participants holding a negative/hesitant attitude was that they felt they were already following a healthy lifestyle and hence would not benefit from lifestyle-based dementia prevention strategies (Theme: “Already following a healthy lifestyle”). Previous research in UK adults aged 50 years and over presented a similar finding (i.e., Sub-theme 6: Already living a healthy lifestyle and therefore reluctant to do more) [17]. Individual-level risk assessment may be helpful in such individuals to comprehensively assess current engagement in healthy lifestyle behaviors and the presence of modifiable risk factors and highlight if there are any areas with scope for improvement.
A third reason expressed by participants holding a negative/hesitant attitude was that they felt taking preventive action against dementia was not relevant at their current life stage (Theme: “Perception that dementia prevention is not relevant at current life stage”). A 2020 Lancet Commission reported that a life-course approach to reducing the risk of cognitive decline and/or dementia is important, whereby it is never too early or too late for preventive action [9]. Hence, further education and discussion around this issue is important to dispel any beliefs that tackling brain health, and prevention of neurodegeneration, is an issue for late life only. Public health messaging communicating the importance of taking a life-course approach, and starting dementia prevention earlier in life, may result in increasing the perceived benefits of such an approach, which, according to the HBM, will increase the likelihood of individuals engaging in positive health behaviors [26].
Important considerations for multidomain lifestyle approaches to dementia prevention
Several participants converged on the theme that targeting multiple lifestyle factors in a holistic/integrated program would be an important characteristic formultidomain lifestyle strategies. Similarly, previous research focused on barriers and facilitators to lifestyle intervention for preventing cognitive decline, as identified by healthcare professionals, cited one of the key considerations being that approaches focus on a holistic view of well-being, not just specific disease prevention [34]. This preference has also been highlighted by previous qualitative research in members of the public [35]. In concert, these findings suggest a preference for holistic/integrated strategies for promoting optimal health in general, in contrast to approaches targeted specifically to dementia prevention.
Several participants discussed that a one-size-fits all approach would not be appropriate and that any strategies should ideally be tailored/personalized to individuals. This is supported by previous work that explored preferences for a hypothetical dementia risk reduction program, whereby the need for personalized lifestyle advice was one of the requirements raised [24]. The importance of personalization as a facilitator for engagement was also identified in a study of an online lifestyle-based risk reduction program targeted at individuals with subjective cognitive decline [36]. A 2021 systematic review on general population perspectives on dementia risk reduction has similarly highlighted the importance of incorporating intervention strategies tailored to the individual, both in respect to content and delivery [37].
A third key preference raised in the current study was that lifestyle-based dementia preventive strategies involve small, achievable steps. This has also previously been raised by health professionals as a key facilitator for lifestyle intervention to prevent cognitive decline [34]. In the current study, this requirement was often discussed, considering gradual, incremental steps as a facilitator for behavioral change, in contrast to making dramatic changes as a hurdle/barrier. According to the HBM, if an individual perceives there to be barriers to performing risk-reducing behaviors, their motivation to change will be diminished [26]. It is therefore vital that lifestyle-based dementia prevention strategies are designed so that behavioral changes proposed are perceived as achievable.
Strengths and limitations
This study builds on previous work in this field looking at attitudes to dementia prevention strategies, specifically in individuals with a family history of the condition [24]. To our knowledge, this is the first study to explore these topic areas in an Australian context. The findings of this study have direct applicability to informing the design and refinement of intervention strategies, to facilitate the appeal and effectiveness of such approaches. A further strength of this study is the procedures applied to guarantee validity and quality of our findings. Firstly, standardized procedures, e.g., screening process and interview protocol, were utilized as much as possible. We also incorporated the input of different researchers (investigator triangulation) to critically challenge thematic maps and illustrative quotes to contribute to the credibility of identified themes. We also closely documented each step of the study for confirmability and presented several illustrative quotes from the interviews for transferability. Additionally, data saturation was reached, indicating the robustness of our data.
This study does have some important limitations. Firstly, a convenience sampling approach was employed, and most participants were highly educated, with over half having completed tertiary level education. Hence, findings cannot be generalized to the broader population. Recruitment was also carried out through email communication, and hence sampling may have been biased towards individuals with good digital skills. Some degree of sampling bias may also have been introduced as most participants were women.
In conclusion, in this sample of middle-aged Australian adults with a family history of dementia, some participants expressed a positive and receptive attitude to engaging with multidomain lifestyle strategies to optimize their brain health and reduce their risk of neurocognitive decline. However, some individuals exhibited a negative, skeptical, or hesitant outlook, and this may be overcome by further education and/or consultation with health professionals around the importance of taking a life-course approach to targeting risk factors, the evidence that lifestyle intervention may be beneficial even if an individual has a genetic predisposition for dementia, and to gain an accurate view of current health behaviors to identify where improvements can be implemented. Furthermore, the importance of multidomain lifestyle-based preventive strategies to be holistic, tailored/personalized, and involve small, achievable steps was highlighted. Hence, ensuring these are characteristics prioritized in the design of future preventive strategies is key to optimize appeal and effectiveness.
Footnotes
ACKNOWLEDGMENTS
We kindly thank all the participants who helped make this research possible.
FUNDING
SED is funded by a Deakin University Postgraduate Research Scholarship. The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript.
CONFLICT OF INTEREST
The authors have no conflict of interest to report.
DATA AVAILABILITY
The data supporting the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
