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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1
DEMENTIA AS A PUBLIC HEALTH PRIORITY
Dementia is a group of disorders characterized by an impairment in cognitive functioning, which poses one of the greatest societal challenges in the 21st century.
In 2019, more than fifty million people were affected by dementia worldwide and it is estimated that this number will increase to 82 million people in 2030 and 152 million people by 2050 (1). Dementia causes a great loss in quality of life and was the leading cause of death in the Netherlands in 2018 (2). Dementia patients live on average four to eight years with this disease after diagnosis (3–6). During the course of the disease, dementia patients become more and more dependent on others (7). Therefore, dementia devastates not only the affected people, but also their families, carers and the society as a whole. As a consequence, the Dutch national costs for dementia compromised 10.3% (9.1 billion euros) of the total healthcare expenses in 2017, making it the most expensive disease in the Netherlands (8). Although no treatment is available yet to cure dementia, delaying the onset or progression of dementia could help to tackle these increasing rates and the associated costs (9). The World Health Organization (WHO) set up a global action plan which includes multiple actions such as making dementia a public health priority, increase dementia awareness and reduce the risk of dementia (10).
MODIFIABLE RISK FACTORS FOR DEMENTIA
ACROSS THE LIFESPAN
Accumulating evidence shows that the development of dementia is a long-term pathological process that starts approximately ten to twenty years before dementia is clinically diagnosed (11–13). Although age is the strongest risk factors for cognitive decline, dementia is not an inevitable consequence of ageing. The evidence of modifiable risk factors influencing this pathological process has been mounting (14–16). The Lancet commission on dementia prevention, intervention and care demonstrated that 40% of the dementia cases is attributable to 12 modifiable risk factors (i.e., less education, hearing loss, midlife hypertension, midlife obesity, smoking, depression, physical inactivity, diabetes, low social contact, excessive alcohol consumption, traumatic brain injury, and air pollution) (17). Also support for several other relevant factors was found, such as hyperlipidaemia, coronary heart disease, renal dysfunction, Mediterranean diet, cognitive activity, and stress (16,18,19).
Moreover, the effects of these modifiable risk factors differ across the lifespan. For instance, obesity and hypertension have more deleterious effects in mid-life, while smoking, depression, physical inactivity, low social contact and diabetes have more deleterious effects in late-life (17). Tackling these modifiable risk factors for dementia can reduce the risk of developing dementia and subsequently the incidence of dementia (17). However, changing health behaviour is difficult and previous research showed that most people from the Dutch general population are unaware of the possibility to reduce dementia risk through changes in health behaviour (20).
HEALTH BEHAVIOUR CHANGE
Several behaviour change theories explain the determinants of health behaviour change, such as the health belief model (HBM) (21), the Social Cognitive Theory (SCT) (22), the Theory of Planned Behaviour (TPB) (23), the Transtheoretical Model (TTM) (24) and the Goal Setting Theory (25). Elements of these models were integrated into one model, the Integrated change (I-change) model (26). The I-change model 2.0 suggests that the process of behavioural change can be distinguished in three phases: 1) Awareness, 2) Motivation, and 3) Action (26,27) (see Figure 1). In the first
phase, the awareness phase, individuals need to become aware of their unhealthy behaviour and dementia risk where factors such as knowledge about dementia and dementia risk factors, perceived susceptibility, perceived severity and cues to action (e.g., having a parent with dementia) are important. In the second phase, the motivation phase, individuals need to become motivated to change their health behaviour, where factors as attitudes (e.g., perceived benefits of health behaviour change), social influences and the confidence in the ability to take action (self-efficacy) are important. During the motivation phase, an intention to change health behaviour is formed. In order to facilitate actual behaviour change, these intentions need to be transformed into actions. Therefore, in the action phase, several preparatory actions need to be planned for achieving the desired health behaviour.
Figure 1. The phases of health behaviour change according to the I-change model 2.0 (26)
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MULTI-DOMAIN INTERVENTIONS FOR DEMENTIA
RISK REDUCTION
Only a few multi-domain interventions were conducted in order to decrease the risk of developing dementia by health behaviour changes and investigated the effectiveness on cognition, such as the Prevention of Dementia by Intensive Vascular Care (preDIVA) trial, the Multidomain Alzheimer Preventive trials (MAPT) and the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) trial (28–30). The aforementioned studies focus on relatively older adults and were offered face-to-face. Although face-to-face contact can be beneficial in these multi-domain interventions, it is relatively expensive and it limits the possibility to reach a large group of individuals. A promising alternative is an online intervention aiming to reduce dementia risk, since it has several advantages. First, it has the ability to reach a large group of individuals and could therefore be cost-effective in the long-term. Second, there is the opportunity to tailor lifestyle advice, which may improve the effectiveness of the intervention in changing health behaviour for dementia risk reduction. Third, access to an online programme is flexible with regard to time and location. Further, starting these interventions earlier in life might be more effective as cognitive decline begins already in midlife (11,12). The INnovative Midlife INtervention for Dementia Deterrence (In-MINDD) is such an online intervention that focuses on middle-aged individuals from the general population aiming to reduce dementia risk (31).
TARGETING MIDDLE-AGED INDIVIDUALS WITH A
FAMILY HISTORY OF DEMENTIA
The effectiveness of an online intervention may be higher when targeted at individuals who do not have dementia but have a higher risk for developing dementia, for instance individuals with a parental family history of dementia. It is recognised that individuals with a parental family history of dementia have a higher risk to develop dementia later in life (32). The average lifetime risk of developing dementia is 10-12% and at least doubles for individuals with a family history of dementia (33). This increased risk can be explained by both genetic and lifestyle factors throughout the life course (34–37), which are passed on from parents to offspring (36,38). Moreover, since individuals with a parental family history of dementia often worry about their own risk to develop
dementia, they might be more receptive to adopt a healthy lifestyle to reduce their dementia risk. For these reasons, individuals with a parental family history of dementia are an interesting target group for dementia risk reduction programmes. However, to our knowledge, no other (online) dementia risk reduction programme focuses on middle-aged individuals with a parental family history of dementia. Therefore, we would like to develop an online dementia risk reduction programme for middle-aged individuals with a parental family history of dementia.
MAIN OBJECTIVE OF THIS THESIS
In order to contribute to the development of an online dementia risk reduction programme for middle-aged individuals with a parental family history of dementia, the overall objective of this thesis was to get insight in the determinants of health behaviour change for dementia risk reduction among middle-aged individuals with a parental family history of dementia. Therefore, three central research questions are addressed:
1. Are middle-aged individuals with a parental family history of dementia a group at risk for dementia?
2. What are the knowledge levels, beliefs and attitudes towards dementia and dementia risk reduction among the general population and middle-aged individuals with a parental family history of dementia?
3. Are middle-aged individuals with a parental family history of dementia willing to assess their dementia risk and change their lifestyle?
The first central research question provides evidence for tackling modifiable risk factors for dementia especially in middle-aged individuals with a parental family history of dementia. Chapter 2 investigates the associations between a parental
family history of dementia and the modifiable risk factors for dementia in middle-aged adults within the Lifelines Cohort study. Lifelines is a multi-disciplinary prospective population-based cohort study examining, in a unique three-generation design, the health and health-related behaviours of 167,729 persons living in the North of the Netherlands. Participant recruitment and baseline assessment took place between December 2006 and December 2013. Participants received questionnaires regarding
1
examination was conducted including blood pressure, measurements, collection of fasting blood samples, and 24-hours urine samples (39).
The second central research question captures the fundamental elements for an effective dementia risk reduction programme. Individuals may be able to reduce their dementia risk and add more healthy years to their lives, if they are willing to change their lifestyle and health behaviour. Therefore, it is essential to get insight in the knowledge, beliefs and attitudes towards dementia and dementia risk among future users of a dementia risk reduction programme. Moreover, by revealing areas for improvement insight can be obtained on what factors (e.g., perceived severity, perceived benefits, perceived barriers, self-efficacy) a dementia risk reduction programme should focus in order to change health behaviour. The Motivation to Change Lifestyle and Health Behaviours for Dementia Risk Reduction (MCLHB-DRR) scale was developed to measures the beliefs and attitudes towards dementia and dementia risk reduction in Australia (40). However, there was no scale available to measure the health beliefs and attitudes towards dementia and dementia risk reduction in the Netherlands. Therefore, we conducted an online survey about lifestyle and dementia in order to cross-culturally validate the Motivation to Change Lifestyle and Health Behaviour for Dementia Risk Reduction (MDLHB-DRR) scale in the Dutch general population (Chapter 3). The Dutch version of the MCLHB-DRR was used to investigate the
association between the determinants and the intention to change their health behaviour among the general population of Northern Netherlands (Chapter 4). The
total study population includes 655 residents of the municipality of Groningen, aged between 30 and 80 years old. Data on demographics, health status, lifestyle, stages of change, knowledge on dementia and health beliefs and attitudes towards dementia risk reduction was collected.
In order the answer our third central research question, we evaluated the knowledge, beliefs and attitudes towards dementia and dementia risk reduction among individuals with a parental family history of dementia and whether they are willing to participate in an online dementia risk reduction programme using focus group discussions (Chapter 5). The qualitative data collected during these focus group discussions is a
valuable addition to the quantitative data in this thesis. This type of study design gave individuals with a parental family history of dementia the opportunity to deviate from topics we anticipated on.
THE DEMIN STUDY
The answers on the three central research questions contributed to the development of our online dementia risk reduction programme, also called the Demin study. Subsequently, the Demin study investigates the uptake and effectiveness of the online dementia risk reduction programme in middle-aged descendants of people with dementia diagnosed at participating memory clinics in the Netherlands (Chapter 7). The Demin study was determined to be population screening on the ground of the
Population Screening Act (WBO) for which a permit is required (41). Therefore, this study has been assessed by the Health Council of the Netherlands and is approved by the Dutch Ministry of Health, Welfare and Sport according to the Dutch Population Screening Act.
OUTLINE OF THIS THESIS
Chapter 2 presents the associations between a parental family history of dementia
and the modifiable risk factors for dementia in middle-aged adults within the Lifelines Cohort study.
Chapter 3 describes the cross-cultural validation of the Dutch Motivation to Change
Lifestyle and Health Behaviour for Dementia Risk Reduction (MCLHB-DRR) in the general population of the Northern Netherlands. Chapter 4 presents the differences
between demographic subgroups in knowledge, health beliefs and attitudes towards dementia and dementia risk reduction in the Dutch general population and its association with the intention to change health behaviours. Chapter 5 examines the
beliefs and attitudes towards dementia risk reduction and the willingness to assess and adopt a healthy lifestyle for dementia risk reduction in individuals with a parental family history of dementia using focus group discussions. Furthermore, cognitive measurements sensitive to early changes, are needed to investigate the effectiveness of a dementia risk reduction programme in middle-aged adults, but are often time consuming. Therefore, a digital version of the Ruff Figural Fluency Test (RFFT) was developed. Chapter 6 examines the validity and reliability of the digital RFFT among
the general population. Further, Chapter 7 describes the study design of a cluster
randomised controlled trial, investigating the uptake and effectiveness of an online tailored dementia risk reduction programme in middle-aged descendants of people
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memory clinics in the Netherlands. Finally, in Chapter 8, I will discuss the main
findings of this dissertation 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.
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