Towards dementia risk reduction among individuals with a parental family history of dementia
Vrijsen, Joyce
DOI:
10.33612/diss.170947423
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2021
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Vrijsen, J. (2021). Towards dementia risk reduction among individuals with a parental family history of
dementia. University of Groningen. https://doi.org/10.33612/diss.170947423
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The overall aim of this thesis was to get insight into the determinants of health behaviour change for dementia risk reduction among middle-aged individuals with a parental family history of dementia, in order to contribute to the development of an online dementia risk reduction programme. More specifically, this thesis aimed: 1) to establish whether individuals with a parental family history of dementia are a group at risk for dementia, 2) to investigate the knowledge, health beliefs and attitudes towards dementia and dementia risk reduction and 3) to study the willingness to participate in an online dementia risk reduction programme among individuals with a parental family history of dementia. This final chapter provides a discussion of the main findings presented in this thesis and the challenges of conducting an online dementia risk reduction programme. Finally, I will make recommendations for future multicentre randomised controlled trials and implications for research and policy making.
MAIN FINDINGS
Individuals with a parental family history of dementia: a
population at risk for dementia?
Individuals with a parental family history of dementia have an increased risk to develop dementia, regardless of their genetic risk (1–4). Finding differences in modifiable risk factors for dementia among middle-aged individuals with and without a parental family history of dementia, might help to identify individuals with an increased risk for dementia and subsequently offer them a dementia risk reduction programme. Therefore, we established the association between having a parental family history of dementia and several modifiable risk factors for dementia using data of the Lifelines
cohort study (Chapter 2). We found that individuals, aged 35 to 65 years older, with a
parental family history of dementia have a higher risk to develop dementia, as they had more often hypertension, high cholesterol, diabetes mellitus, cardiovascular diseases, obesity, overweight, depressive symptoms, and were also more often current smokers or ex-smokers. On the other hand, they were more often non-alcohol consumer and physically and socially active compared to their peers without a parental family history of dementia. In addition, individuals with a parental family history of dementia had a higher Lifestyle for Brain Health (LIBRA) score (5,6), which suggests that middle-aged individuals with a parental family history of dementia as a group are at increased risk for developing dementia and may be an eligible population for a dementia risk
Knowledge, health beliefs and attitudes towards dementia
and dementia risk reduction
Previous research has shown that 40% of the dementia cases can be attributed to twelve modifiable risk factors (7). Despite the large potential for prevention, the change of health behaviour is difficult and complex (8–11). First, individuals need to be aware of the possibility to reduce dementia risk. We found that the majority (62%) of the participants were aware of the possibility to reduce the risk of developing common types of dementia by maintaining a healthy lifestyle, but only 31% of the participants indicated that high blood pressure increases the risk to develop
dementia (Chapter 4). Subsequently, individuals need to be motivated to change
their health behaviour for dementia risk reduction. Measuring their health beliefs and attitudes towards dementia and dementia risk reduction, may help to capture fundamental elements to effectively enable these individuals to change their health behaviour for dementia risk reduction. In order to measure the health beliefs and attitudes towards dementia and dementia risk reduction, the Motivation to Change Lifestyle and Health Behaviour for Dementia Risk Reduction (MCLHB-DRR) scale was developed in Australia (12). However, there was no instrument available to measure the health beliefs and attitudes towards dementia and dementia risk reduction in the
Netherlands. In Chapter 3, we investigated the cross-cultural validity of the Dutch
MCLHB-DRR scale among the Dutch general population. Four items of the original scale had to be omitted, which might be due to deficiencies in the translation process or cultural differences with Australia. The final Dutch version of the MCLHB-DRR scale, containing 23 items, is comparable to the original scale in terms of its factor structure, consisting of seven factors representing the subscales perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, general health motivation and self-efficacy. The Dutch MCLHB-DRR is a validated tool for measuring health beliefs and attitudes towards dementia and dementia risk reduction among the Dutch adult general population.
In Chapter 4, the results of a survey investigating the knowledge, health beliefs and
attitudes and the intention to change four specific health behaviours (e.g., physical activity, diet, alcohol consumption and smoking) among the general population are described. Especially older participants had higher perceived severity scores and lower perceived benefits, perceived barriers and self-efficacy scores compared to younger participants. This suggests that older individuals may think that they benefit
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less from lifestyle changes or do not benefit at all. Highly educated participants had higher perceived benefits and self-efficacy scores, and lower perceived barriers scores, which was in line with previous findings (13,14). Furthermore, older participants had less often the intention to change their health behaviour compared to the younger participants. We found that perceived benefits and cues to action are associated with the intention to change physical activity and alcohol consumption. Perceived barriers scores are inversely associated with the intention to change smoking. Individuals who experience more barriers had more often the intention to change their diet, which is not what we would expect. A previous study has shown that healthy eating is a challenge and individuals often experience barriers, such as available time and taste (i.e., individuals do not like the taste of healthy food products) (35). Therefore, individuals who are taking preparatory actions in order to improve their diet might experience more barriers compared to individuals who did not have an intention to change their diet.
Willingness to participate in an online dementia risk reduction
programme
In order to optimize the uptake and effectiveness of an online dementia risk reduction programme for individuals with a parental family history of dementia, it is important
that the programme fits the needs of these future potential users. In Chapter 5,
we used focus group discussions to investigate the knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among individuals with a parental family history of dementia, in order to get insight into the willingness to participate in an online dementia risk reduction programme. Our hypothesis was that individuals who are experiencing a major life event, such as the diagnosis of a severe disease (i.e., vascular dementia or Alzheimer’s disease) of your parent might be receptive to change their health behaviour and willing to participate in an online dementia risk reduction programme (15). An unexpected finding of these focus group discussions was that contact with peers to share experiences how to cope with having a parent with dementia is important, and even more important than talking about their own health and one’s risk to develop dementia. Sharing these experiences may be necessary for individuals to move from the pre-contemplation phase (e.g., not thinking about changing health behaviour) to the contemplation phase (e.g., intending to start improving health behaviour) in order to change their health behaviour. For this reason, it is important to incorporate interaction between individuals with a parental
family history in future dementia risk reduction programmes, for example by group-based interventions. Despite the experiences of these individuals with the symptoms and consequences of dementia, their knowledge on dementia and dementia risk reduction is poor. They were unaware of the possibility to reduce dementia risk. After interaction with their peers, participants adopted a more positive attitude towards participation in an online dementia risk reduction programme and were eager to receive more information about dementia risk reduction.
Measurement of cognitive function
In order to be able to measure the effectiveness of an online dementia risk reduction programme for optimal cognitive function among middle-aged individuals with a parental family history of dementia, a measurement instrument is needed that is valid, reliable and sensitive to detect changes in cognition. The Ruff Figural Fluency Test (RFFT) is such a test, however, the administration of the test and scoring of the test results is rather labour intensive and therefore time consuming, which makes it not a very suitable test for large-scale cohort studies. Therefore, a digital version of the RFFT was developed, in which participants can perform the digital RFFT independently using an iPad and Apple Pencil and RFFT scores are computed
automatically. In Chapter 6, we investigated the validity and reliability of this digital
RFFT. The automatic scoring of the digital RFFT has excellent criterion validity and is able to discriminate between different age categories and levels of education. The low agreement between the digital RFFT and paper-and-pencil RFFT and the moderate test-retest reliability can be explained by learning effects. In conclusion, the digital RFFT is a valid, reliable and efficient instrument to measure executive cognitive function among the general population and is a good alternative to the paper-and-pencil RFFT in large-scale studies. However, scores of the digital RFFT cannot be used interchangeably with the scores of the paper-and-pencil RFFT.
Challenges of setting up a cluster randomised controlled trial
for reducing dementia risk
Based on the studies described in this thesis, we developed a cluster randomised controlled trial (RCT) aiming to reduce dementia risk among individuals with a parental
family history of dementia (
www.demin.nl
). Chapter 7 presents the study protocolof the Demin study, which aimed to investigate the uptake and effectiveness of a tailor-made online lifestyle programme for dementia risk reduction among
middle-8
aged descendants of people with recently diagnosed late-onset dementia in one of the participating memory clinics in the Netherlands. Setting up the Demin study came with several ethical and practical challenges. These challenges will be discussed below and recommendations will be made for future RCTs that may be of interest for researchers who want to develop future lifestyle intervention studies to reduce dementia risk and remain optimal cognitive health.
The Demin study: population research or medical research
After receiving the grant from the Netherlands Organization for Health Research and Development (ZonMw) for the Demin study, the institute indicated that the Demin study could possibly be a population research for which a permit is needed from the Ministry of Health, Welfare and Sports (16). One of the categories of population research for which a permit is required is namely ‘population screening of serious diseases or defects for which there is no treatment or prevention possible’ (17). Although a lifestyle intervention focusing on modifiable risk factors for dementia could help to reduce the risk for dementia, it is not a reassurance that people will not will develop dementia later in life. Therefore, it was not clear whether the Demin study fulfils the criteria for population research. The Dutch Health Council was approached to evaluate the Demin study and they informed us that the Demin study was both population research as covered by the Population Screening Act (Wbo) and medical/scientific research within the sense of the Medical Research Involving Human Subjects Act (Wmo). However, only the law of the Population Screening Act (Wbo) was applicable to the Demin study, since it belongs to one of the categories of population research for which a permit is required. Even after a long period of unclarity, obtaining the permit took almost one year. In addition, several adjustments to the programme had to be made before we could start with the data collection of the study. The slogan of the study ‘Verklein de kans op dementie’ (Reduce your risk to develop dementia) was changed into ‘Bescherm je brein’ (Protect your brain) and cognitive tests were excluded from the dementia risk assessment, since the Dutch Health Council was afraid that participants would see this as a diagnostic test for dementia.
Improving people’s lifestyle for dementia risk reduction has a certain paradox. Due to a healthy lifestyle more healthy life years will be added to people’s lives, which may ultimately increase the risk on dementia as age is an important risk factor for dementia. Thus, improving lifestyle could lead for example to less deaths due to cardiovascular diseases and more individuals with dementia, although with a
higher age of onset (18). In addition, although many longitudinal cohort studies have investigated the association between modifiable risk factors and dementia, but only a few (large) trials have investigated the effectiveness of changing these modifiable risk factors on cognitive function. The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) trial demonstrated that a 2-year face-to-face multi-domain intervention could improve or maintain cognitive functioning in at-risk older people from the general population (19,20).
Challenges to develop an online application for the dementia risk
reduction programme
In collaboration with multiple parties (i.e., Bruna&Bruna, Rocket Industries, Centric, Research Data Support (RDS) from the University Medical Centre Groningen (UMCG), Zynyo), the online application for the dementia risk reduction programme was developed, consisting of online questionnaires, tailored made lifestyle advice using decision trees, automatic e-mail and text messages, spoken animations, and interview movies. Regular meetings were scheduled to keep each other updated about the progress of the development of the web application, what still had to be done and where parties had to align which each other’s work. While collaboration can be useful, occasionally it resulted in discussions on who was responsible for what. This was not conducive to the process of development, since these parties were dependent on each other’s work. A previous study showed that privacy risk was one of the major reasons for non-participating in an online risk assessment for cardiometabolic risk (21). Therefore, we incorporated the electronic informed consent using SMS-tan in the programme. Within our University, the electronic informed consent was not used before in medical research and it was unclear whether it would be in line with the General Data Protection Regulations (GDPR; in Dutch: ‘Algemene Verordening Gegevensbescherming’ (AVG)) (22), which was just implemented during the development of the application.
Recruitment of hospital memory clinics
The Demin study is a cluster randomised controlled trial, for which we needed at least 21 memory clinics to detect a difference of 20% in uptake between memory clinics that recruited eligible participants using an active and passive recruitment strategy. In total, 79 hospital memory clinics in the Netherlands were approached, of which 27 (34%) memory clinics were interested in participation. Interested hospital memory
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clinics were visited and provided with additional information about the study. Before hospital memory clinics could start with the recruitment of participants for the Demin study, first local approval from the Board of Directors and approval of the Clinical Trial Agreement (CTA) was needed and lab contracts had to be arranged. Nevertheless, local approval of the Board of Directors could only be requested after approval of the Ministry of Health, Welfare and Sports was obtained. In addition, hospitals were often not familiar with approval of Population research for which a permit is needed and some hospitals did not have a staff member for legal affairs to review and approve the CTA. For these reasons, several hospital memory clinics decided not to participate in the study, which made it difficult to recruit sufficient hospital memory clinics. In the end, only 20 (25%) hospital memory clinics could start recruitment of participants for the Demin study.
Recruitment of participants
After approval was obtained and lab contracts were arranged, recruitment of participants for the Demin study started in two memory clinics in December 2018. Gradually, the other memory clinics started recruitment after local approval was obtained. The Demin study aimed to include 378 participants and memory clinics thought it would be easy to include at least 15 participants within one year. However, until December 2020, only 110 participants, including 12 siblings signed the online
informed consent form (see Figure 1). This relatively low uptake has several reasons:
1. The number of diagnoses with Alzheimer’s disease, Vascular dementia or mixed
dementia is lower than the number that was estimated by the memory clinics before the start of the recruitment. Memory clinics may have underestimated the effect of Lasagna’s law, which states that the number of potential participants decreases directly after a study begins (23). Only 30% of the estimated number of dementia patients was seen in the participating memory clinics and only 1 memory clinic was able to include 15 participants. Two memory clinics did not include any participant of which one memory clinic was actively recruiting participants but with a relatively low number of potential participants. A review of multicentre randomised controlled trials (RCT) showed that the recruitment rate of participants is often lower than anticipated on. This review found that less than a third (31%) of the multicentre RCTs achieved their target sample size and only 24% of the multicentre RCTs achieved at least 80% of their target sample size (24).
2. Not all potential participants received an envelope with the information letter
(38% did not receive an envelope). Without this information letter potential participants cannot participate. Some memory clinics might have lacked a member who was dedicated to the recruitment tasks (25), since members of the memory clinics might not have a special interest in the prevention of dementia or dementia risk reduction as they mainly treat patients with severe cognitive problems. Also, new staff members in the memory clinic might also not be informed about the Demin study. Although we attempted to optimize the interest and involvement of the participating memory clinics in the study by sending them a newsletter every three months and several incentives (i.e., competition to win a freshly baked apple pie and two theatre vouchers, a jar with peppermints after the summer holidays to have a fresh start to recruit participants again), this did not result in an increase in the number of participants.
3. The percentage of invited potential participants that signed the informed consent
is lower than estimated beforehand (10% instead of 30% for passive recruitment and 15% instead of 50% for active recruitment). In addition, a relatively large part of the participants (9%) is recruited by siblings, which are not taken into account in the primary outcome uptake. It might be that people are not aware of
the possibility to reduce dementia risk (Chapter 4). Furthermore, although we
expected that individuals who experience a major life event (parental diagnosis of dementia) would encourage to think about their own health and increase their willingness to participate in an online tailor-made lifestyle programme for dementia risk reduction, learning to cope with having a parent who was recently diagnosed with dementia was more pressing than thinking about
their own risk of developing dementia (Chapter 5). Therefore, we adapted the
inclusion criteria (July 2020) from having a recently diagnosed parent within the last 6 months to 12 months, however, this did not result in an increase in the number of participants. Unfortunately, the corona pandemic also had an impact on the recruitment of participants of the Demin study. First, the recruitment of participants had been put on hold during March 2020 until June 2020. Second, a large part of the potential participants had digital consultations instead of face-to-face consultations at the memory clinic. Therefore, the recruitment strategies (active and passive) of the memory clinics changed. In some cases, the information letter was sent by post mail to the potential participants, which caused contamination between the passive and active recruitment strategy. In
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some cases, the information letter was not sent to the potential participants at all. Lastly, potential participants might have worried more about (the care for) their parent with dementia than their own health, since their parent are and extremely vulnerable population for the COVID-19 virus and might have trouble understanding and following the social distancing guidelines.
9 53 52 55 71 65 53 61 88 115 115 98 123 61 2 3 9 6 28 39 66 52 56 48 6 31 30 28 50 46 36 47 52 72 60 60 72 42 3 5 7 8 30 31 39 39 28 30 1 3 6 2 5 4 6 4 9 12 6 5 9 6 4 1 0 1 1 3 1 7 1 1 0 10 20 30 40 50 60 70 80 90 100 110 120 130 Dece mbe r Janu ary Febr uary Mar ch April May June JulyAugust Sept embe r Octo ber Nove mbe r Dece mbe r Janu ary Febr uary Mar ch April May June JulyAugust Sept embe r Octo ber Nove mbe r Dece mbe r A m ou nt o f p eo pl e
Recruitment of participants per month
Number of potential eligible participants Number of approached potential eligible participants Number of included participants (signed IC)
Figure 1. Number of potential eligible participants, number of approached potential eligible
participants and number of participants included in the Demin study (per month), starting in December 2018 until 2020.
Loss to follow-up
Also loss to follow up is a common problem in RCTs. Potential participants of the Demin study were clearly informed about the content and duration of the online tailor-made lifestyle programme for dementia risk reduction, but were also free to withdraw from the study at any time. In order to minimise the number of withdrawals, automatic reminders were sent to the participant if the online questionnaire was not filled in within 2 weeks.
Nevertheless, 43% of the participants did not complete the second questionnaire (3 months after baseline) and 74% of the participants did not complete the last questionnaire (12 months after baseline). One of the aspects that might play a role, is the lack of personal contact with the research staff or peers (26). Also, the corona
pandemic could have had an impact on the compliance to the lifestyle advice. For
was to contact old friends who they have not seen for a while or with peers who also have a parent with dementia. Due to the COVID-19 regulations, this might not have been possible. Furthermore, also the physical assessment at baseline and 12 months follow-up, including measurement of body weight and height, waist and hip circumference, blood pressure and a fasting blood sample could not be conducted at the memory clinic during the (intelligent) lockdown, as research was temporarily not allowed in some hospitals. Even when it was allowed, participants might have hesitated to make an appointment for physical examination at the hospital memory clinic, due to the chance of getting infected by the COVID-19 virus.
Based on our experiences with conducting a multicentre cluster randomised trial, we made recommendations for future multicentre studies aiming to reduce dementia risk (Box 1).
Box 1. Recommendations for future multicentre studies (aiming to reduce dementia risk)
• Make use of others’ knowledge and expertise in developing a tailor-made
online lifestyle programme without collaborating with too many different parties.
• Take into account the duration of the local approval process (median 11
months, range: 1 – 20 months)
• Take possible costs into account for local approval of the Board of Directors,
which vary per hospital from 0 euro to 1000 euros.
• Take into account the start-up costs for each laboratory, varying from 0 euro
to 750 euros per laboratory.
• Make sure all (new) team members of participating centres are aware of the
study and their tasks.
• Give feedback on the progress of recruitment on a regular basis and discuss
barriers to recruit potential participants.
• Incorporate the possibility that participants can socially interact with other
participants in order to share experiences about the care of their parent and how to change their health behaviours.
• Make sure online questionnaires are compatible with the most commonly
used internet browsers.
• Make sure that participants do not have to travel a long distance for physical
examination.
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METHODOLOGICAL CONSIDERATIONS
Selective participation
Recruitment of participants is often a challenge and that those who eventually do participate tend to be more highly educated (27–30). Also in most of the studies described in this thesis, the majority of the participants were highly educated (range: 29%-80%). Nevertheless, this is a common phenomenon in research (27– 30) and does not automatically mean that there is selection bias (31). Although the participants may be representative group of individuals that will make use of future online dementia risk reduction programmes, it remains unclear to what extent the findings are generalizable to less educated individuals.
We found that less educated participants were less often aware of the possibility to reduce dementia risk and that high blood pressure is one of the risk factors for
dementia (Chapter 4 and 5). In addition, less educated individuals have less often
a healthy lifestyle and more risk factors for cardiovascular diseases (32). Therefore, an online dementia risk reduction programme could have even more impact among the less educated individuals. In order to assure participation of less educated participants in the Demin study, we included a spoken animation (about dementia, heredity of dementia, risk and protective factors for dementia, and how to tackle potential risk factors for dementia), visual screenshots representing the steps of the registration process and a visual representation of personal protective and risk factors for dementia. Also, the memory clinics were matched on the average Social Economic Position of the residents living around the memory clinic (neighbourhood SEP using Statistics Netherlands) and the estimated number of newly diagnosed dementia patients seen per year. Nevertheless, the percentage of less educated individuals in the Demin study was still low (8%).
Measuring parental family history of dementia
Identifying individuals at risk for dementia, could help establishing a high-risk prevention strategy. Having a parental family history of dementia increases the risk to a similar extent to that of carrying the APOE e4 allele (33–35). Therefore, identifying individuals with an increased risk by their parental family history could be a good alternative, which evades both the ethical and practical challenges of genotyping cognitively healthy individuals. In this thesis, individuals with a parental family history
of dementia are identified either based on self-reported data (Chapter 2,3,4) or by the clinical diagnosis of their parent (Chapter 5 and 7). The disadvantage of self-reported data is that it could have led to misclassification. For example, individuals who had a parent with memory problems could have indicated that they have a parent with dementia, while these memory problems could also be a symptom of another disorder. However, it is unlikely that this (non-differential) misclassification would
change our conclusions. In the Demin study (Chapter 7) we based parental family
history of dementia on clinical diagnosis at the hospital memory clinic. Therefore, misclassification could not have had an influence on the effectiveness of the online dementia risk reduction programme.
IMPLICATIONS AND RECOMMENDATIONS FOR FUTURE
RESREACH AND POLICY
This thesis pointed out several implications and recommendations for future research and policy, which I will discuss in this paragraph.
First, knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among the Dutch general population do not sufficiently support dementia risk reduction yet and should be improved. For instance, awareness of the possibility to reduce the risk of developing dementia and knowledge about risk factors of dementia should be increased, for example through a national mass media
campaign. Chapter 4 showed that the health beliefs and attitudes towards dementia
and dementia risk reduction among the Dutch general population can be improved in several ways. Especially younger individuals should become more aware of the symptoms and severity of dementia and its consequences. For example, by creating a more dementia friendly society, which provide lessons on what dementia is, what type of difficulties people with dementia may experience and how it affects their families (36,37). This may help younger individuals to acknowledge the importance of a healthy lifestyle for reducing dementia risk later in life. In addition, the benefits of health behaviour change for dementia risk reduction should be emphasized in order to motivate individuals to adopt a healthier lifestyle, especially among older
individuals. Finally, further research should explore the perceived barriers to engage
in a healthy lifestyle for dementia risk reduction, especially among younger and less educated individuals, and how to tackle these barriers. Subsequently, these barriers should be reduced to improve adopting a healthy behaviour.
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Second, online dementia risk reduction programmes should help middle-aged individuals with a parental family history of dementia to adopt a healthier lifestyle to reduce the risk of developing dementia, taking their preferences and needs with
regard to an online dementia risk reduction programme into account. Chapter 5
showed that it is important to include the possibility of exchanging experiences with the other participants who have had similar experiences, for example by group-based interventions. This may facilitate movement between the pre-contemplation phase and the contemplation phase of behaviour change (15). To the best of our knowledge, the FINGER (Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability) trial is the only dementia risk reduction trial to date that provided group-based as well as individual interventions that significantly reduced dementia risk by improving or maintaining cognitive functioning (19). The group-based interventions of this trial potentially primarily contributed to the effectiveness of the multi-domain intervention. Furthermore, based on the preferences of future potential users, we recommend including the following elements in future online dementia risk reduction programmes: 1) a central point of reliable, clear and up to date information about dementia and dementia risk reduction; 2) an easy interpretable outcome measure on which users can act upon (i.e., keep this up, room for improvement or remember to manage well); 3) personalized lifestyle advice by for example a lifestyle coach and; 4)
regular reminders (Chapter 5). Taking all these elements into account might improve
the uptake and effectiveness in adopting and maintaining a healthy behaviour for dementia risk reduction among individuals with a parental family history of dementia. Future research should examine to what extent such a programme leads to the intention and actual change of health behaviour among middle-aged individuals with a parental family history of dementia.
Third, individuals with a parental family history of dementia should be targeted in
future dementia risk reduction programmes. Chapter 2 suggest that middle-aged
individuals with a parental family history of dementia are a group at risk for developing dementia and may benefit from an online dementia risk reduction programme. Especially for those with a genetic predisposition, a healthy lifestyle could be beneficial (38,39).
Fourth, the general practice might be a more suitable setting to recruit individuals with a parental family history of dementia, since potential participants are seen in this setting first and only complex and doubtful cases are referred to a memory clinic for
diagnosis (40,41). Nevertheless, first the beliefs and attitudes of the general population and general practitioners in the Netherlands towards dementia and dementia risk reduction should be investigated. Also, the barriers of successful implementation of a dementia risk reduction programme should be tackled. For example, by incorporating a dementia risk module in the already existing Prevention Consultation guideline (the Personal Health Check). This guideline was introduced in Dutch general practices to improve early detection and management of patients with an increased risk for cardiovascular diseases (21). Since dementia and cardiovascular diseases share many risk factors, a dementia risk module could easily be incorporated. Further, general practitioners should be educated in ways how to inform individuals with a parental family history of dementia properly.
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REFERENCES
1. Scarabino D, Gambina G, Broggio E, Pelliccia F, Corbo RM. Influence of family history of dementia in the development and progression of late-onset Alzheimer’s disease. Am J Med Genet Part B Neuropsychiatr Genet. 2016 Mar;171(2):250–6.
2. van Exel E, Eikelenboom P, Comijs H, Frölich M, Smit JH, Stek ML, et al. Vascular factors and markers of inflammation in offspring with a parental history of late-onset Alzheimer disease. Arch Gen Psychiatry. 2009 Nov 1;66(11):1263–70.
3. Lourida I, Hannon E, Littlejohns TJ, Langa KM, Hyppönen E, Kuzma E, et al. Association of lifestyle and genetic risk with incidence of dementia. JAMA. 2019 Aug 6;322(5):430. 4. Goldman JS, Hahn SE, Catania JW, LaRusse-Eckert S, Butson MB, Rumbaugh M, et al.
Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genet Med. 2011 Jun;13(6):597–605.
5. Schiepers OJG, Köhler S, Deckers K, Irving K, O’Donnell CA, van den Akker M, et al. Lifestyle for Brain Health (LIBRA): a new model for dementia prevention. Int J Geriatr Psychiatry. 2018 Feb;33:167–75.
6. Vos SJB, van Boxtel MPJ, Schiepers OJG, Deckers K, de Vugt M, Carri?re I, et al. Modifiable Risk Factors for Prevention of Dementia in Midlife, Late Life and the Oldest-Old: Validation of the LIBRA Index. J Alzheimer’s Dis. 2017 May 11;58(2):537–47.
7. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020;396(10248):413–46.
8. Bandura A. Self-efficacy conception of anxiety. Anxiety Res. 1988;1(2):77–98. 9. Prochaska JO, Velicer WF. The transtheoretical model of health behavior change. Am J
Health Promot. 1997;12(1):38–48.
10. Janz NK, Becker MH. The health belief model: a decade later. Heal Educ Behav. 1984 Jan 1;11(1):1–47.
11. Locke EA, Latham GP. A theory of goal setting & task performance. Englewood Cliffs, N.J. : Prentice Hall; 1990.
12. Kim S, Sargent-Cox K, Cherbuin N, Anstey KJ. Development of the motivation to change lifestyle and health behaviours for dementia risk reduction scale. Dement Geriatr Cogn Dis Extra. 2014 May;4(2):172–83.
13. Akyol MA, Zehirlioğlu L, Erünal M, Mert H, Hatipoğlu NŞ, Küçükgüçlü Ö. Determining Middle-Aged and Older Adults’ Health Beliefs to Change Lifestyle and Health Behavior for Dementia Risk Reduction. Am J Alzheimer’s Dis Other Dementias®. 2020 Jan 1;35:1–7. 14. Smith BJ, Ali S, Quach H. Public knowledge and beliefs about dementia risk reduction: a
national survey of Australians. BMC Public Health. 2014 Dec 28;14(1):661.
15. Rosenberg A, Coley N, Soulier A, Kulmala J, Soininen H, Andrieu S, et al. Experiences of dementia and attitude towards prevention: a qualitative study among older adults participating in a prevention trial. BMC Geriatr. 2020 Dec 12;20(1):99.
16. Central Committee on Research Involving Human Subjects. The definition of population screening [Internet]. 2020. Available from: https://english.ccmo.nl/investigators/types-of-research/other-types-of-research/population-research/definition
17. Central Committee on Research Involving Human Subjects. Population Screening Act [Internet]. 2020. Available from: https://english.ccmo.nl/investigators/legal-framework-for-medical-scientific-research/laws/population-screening-act
18. Stephan BCM, Brayne C. Vascular factors and prevention of dementia. Int Rev Psychiatry. 2008 Jan 11;20(4):344–56.
19. Ngandu T, Lehtisalo J, Solomon A, Levälahti E, Ahtiluoto S, Antikainen R, et al. A 2 year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): a randomised controlled trial. Lancet. 2015 Jun 6;385(9984):2255–63.
20. Deckers K, Koehler S, Ngandu T, Frans RJ V, Kivipelto M, Solomon A. Quantifying
dementia prevention potential in the FINGER randomised controlled trial using the LIBRA prevention index. Alzheimer’s Dement. 2020;1–8.
21. Van Der Meer V, Nielen MM, Drenthen AJ, Vliet M Van, Assendelft WJ, Schellevis FG. Cardiometabolic prevention consultation in the Netherlands: screening uptake and detection of cardiometabolic risk factors and diseases – a pilot study. BMC Fam Pract. 2013;14(1):1.
22. Europees Parlement. Algemene Verordening Gegevensbescherming. Publicatieblad van de Europese Unie. 2016.
23. Nahler G, Nahler G. Lasagna’s law. Dictionary of Pharmaceutical Medicine. Springer Vienna; 2009. 105–105 p.
24. McDonald AM, Knight RC, Campbell MK, Entwistle VA, Grant AM, Cook JA, et al. What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. Trials. 2006 Apr 7;7(1):9.
25. Preston NJ, Farquhar MC, Walshe CE, Stevinson C, Ewing G, Calman LA, et al. Strategies designed to help healthcare professionals to recruit participants to research studies. Cochrane Database Syst Rev. 2016;2016(2).
26. Maher C, Ferguson M, Vandelanotte C, Plotnikoff R, De Bourdeaudhuij I, Thomas S, et al. A web-based, social networking physical activity intervention for insufficiently active adults delivered via Facebook app: Randomised controlled trial. J Med Internet Res. 2015 Jul 1;17(7).
27. Patel MX, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv Psychiatr Treat. 2003;9(3):229–38.
28. Reinikainen J, Tolonen H, Borodulin K, Härkänen T, Jousilahti P, Karvanen J, et al. Participation rates by educational levels have diverged during 25 years in Finnish health examination surveys. Eur J Public Health. 2018 Apr 1;28(2):237–43.
29. Korkeila K, Suominen S, Ahvenainen J, Ojanlatva A, Rautava P, Helenius H, et al. Non-response and related factors in a nation-wide health survey. Eur J Epidemiol. 2001;17(11):991–9.
30. Demarest S, Van Der Heyden J, Charafeddine R, Tafforeau J, Van Oyen H, Van Hal G. Socio-economic differences in participation of households in a Belgian national health survey. Eur J Public Health. 2013 Dec;23(6):981–5.
31. Blair E, Zinkhan GM. Nonresponse and generalizability in academic research. J Acad Mark Sci. 2006 Dec;34(1):4–7.
8
32. Kilander L, Berglund L, Boberg M, Vessby B, Lithell H. Education, lifestyle factors and mortality from cardiovascular disease and cancer. A 25-year follow-up of Swedish 50-year-old men. Int J Epidemiol. 2001;30(5):1119–26.
33. Green RC, Cupples LA, Go R, Benke KS, Edeki T, Griffith PA, et al. Risk of dementia among white and African American relatives of patients with Alzheimer disease. J Am Med Assoc. 2002 Jan 16;287(3):329–36.
34. Cupples LA, Farrer LA, Sadovnick AD, Relkin N, Whitehouse P, Green RC. Estimating risk curves for first-degree relatives of patients with Alzheimer’s disease: The REVEAL study. Genet Med. 2004 Jul;6(4):192–6.
35. Van Duijn CM, Clayton D, Chandra V, Fratiglioni L, Graves AD, Heyman A, et al. Familial aggregation of alzheimer’s disease and related disorders: Acollaborative re-analysis of case-control studies. Int J Epidemiol. 1991;20:S13–20.
36. Alzheimer’s society. Creating a dementia-friendly generation Dementia resources for schools Teacher toolkit for all learners aged 5-7 years. London; 2017.
37. Alzheimer’s society. Training and consultancy [Internet]. [cited 2021 Jan 30]. Available from: https://www.alzheimers.org.uk/dementia-professionals/training-consultancy 38. Kivipelto M, Rovio S, Ngandu T, Kåreholt I, Eskelinen M, Winblad B, et al. Apolipoprotein E
epsilon4 magnifies lifestyle risks for dementia: a population-based study. J Cell Mol Med. 2008 Dec;12(6B):2762–71.
39. Dekhtyar S, Marseglia A, Xu W, Darin-Mattsson A, Wang HX, Fratiglioni L. Genetic risk of dementia mitigated by cognitive reserve: A cohort study. Ann Neurol. 2019 Jul 1;86(1):68– 78.
40. Verhey FRJ, Ramakers I, Jolles J, Scheltens P, Vernooij-Dassen M, Olde Rikkert M. Geheugenpoli’s in Nederland: Ontwikkelingen sinds 1998. Tijdschr Gerontol Geriatr. 2007;38:237–45.
41. Moll van Charante E, Perry M, Vernooij-Dassen M, Boswijk D, Stoffels J, Achthoven L, et al. NHG-Standaard Dementie (derde herziening). Huisarts Wet. 2012;55(7):306–17.
