Three focus group discussions were conducted in 2017 with four to six participants each to achieve data saturation. The participant characteristics are provided in Table 1. The age of the participants ranged from 26 to 61 years (mean 48.8, standard deviation (SD) 12.0), and 80% of the participants were female. The majority (80%) of the participants had a high educational level (see Supplementary file 2 for the definitions of the educational levels).
Table 1
Participant characteristics (N = 15)
Focus group | Respondent | Sex | Age range | Educational level |
1 | 1 | Female | 20–30 | High |
1 | 2 | Female | 40–50 | High |
1 | 3 | Female | 40–50 | Low |
1 | 4 | Male | 50–60 | Low |
1 | 5 | Female | 30–40 | High |
1 | 6 | Male | 60–70 | High |
2 | 7 | Female | 50–60 | High |
2 | 8 | Male | 50–60 | High |
2 | 9 | Female | 60–70 | Middle |
2 | 10 | Female | 20–30 | High |
2 | 11 | Female | 40–50 | High |
3 | 12 | Female | 60–70 | High |
3 | 13 | Female | 50–60 | High |
3 | 14 | Female | 60–70 | High |
3 | 15 | Female | 50–60 | High |
Four themes were identified in the analysis, of which three themes emerged directly from the topic guide: 1) knowledge on dementia and dementia risk reduction, 2) beliefs and attitudes towards dementia risk assessment and dementia risk reduction and 3) the requirements for a dementia risk reduction program. One theme was not foreseen in the topic guide but instead featured prominently in the analysis, namely, the experiences of having a parent with dementia, including the related practical and emotional consequences for oneself. Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and dementia risk reduction, participants first exchanged their experiences of having a parent with dementia before we were able to discuss the topics in our topic guide. Each theme is described in the following sections.
Experiences of having a parent with dementia
Participants underlined the need to talk and share their experiences of having a parent with dementia with people who have similar experiences: ‘At this time, what I need most is to share my experiences with people who are going through the same things’ (female, 26 years). For example, the participants perceived dementia as a severe disease and saw their parent becoming a different person: ‘I feel that it is a demeaning illness because, as a person, you are so different after getting sick’ (female, 52 years). Nevertheless, the participants were relieved when their parent finally got diagnosed: ‘(…) so, really, it was quite a relief that I finally knew what it was; we thought for a long time that she had severe depression’ (female, 45 years). Having a diagnosis improved the understanding of their parent: ‘Yes, that is why I was ultimately relieved that it had been diagnosed, that I knew then, and then, I kind of resigned myself to it because certainly in the beginning, years ago, I thought, mum, please hurry up, what do you mean, you can’t find the way anymore?’ (female, 50 years).
Having a parent with dementia has practical and emotional consequences. A practical consequence is taking care of their parent, which requires time: ‘Well, of course, I’m a busybody, I mean, as an informal carer. I visit on average two to three times a week, so yes, that is rather intense’ (female, 60 years). An emotional consequence of having a parent with dementia is the anxiety to develop dementia: ‘My mother was diagnosed with Alzheimer’s when she was 57, and she died of it when she was 67 (…) me and my brothers, we sometimes talk about it; we are simply afraid that we may be confronted with it at the same age’ (female, 49 years). Nevertheless, learning to cope with having a parent with dementia was more pressing than thinking about their own risk of developing dementia: ‘I am more concerned about my parents than about myself’ (male, 50 years).
Knowledge on dementia and dementia risk reduction
The general knowledge of dementia varied between participants, regardless of their age, gender and educational level. Several participants explained the use of dementia as an umbrella term: ‘Well, I think that dementia is an umbrella term, covering all those [types of dementia]’ (female, 60 years). Some of the participants thought that Alzheimer’s disease is worse than “normal” dementia: ‘Of course, Alzheimer’s disease is a worse type than ordinary dementia’ (female, 52 years). A small number of participants even explained the pathology of dementia, although hesitantly: ‘It’s to do with proteins in the brain, that the transmission of signals is poorer, and so on’ (female, 52 years). Most participants were uncertain about the heritability of dementia: ‘I’m not sure whether it is hereditary or not, or perhaps early-onset dementia is, I really don’t know’ (female, 60 years). One participant was even hesitant to obtain information about the heritability of dementia: ‘uh, well, the hereditary factor, that, uh, I’m hesitant about that; it appears to exist, but I wouldn’t presume to … I am also reluctant to really look for information about this. Perhaps I just don’t want to know’ (female, 49 years).
Regarding their knowledge of dementia risk reduction, participants were initially uncertain whether the development of dementia later in life could be prevented or delayed: ‘I have no idea whether I can do something about it’ (male, 65 years). Therefore, non-modifiable risk factors were often mentioned first, such as age, genetics and family history. After encouraging them, participants also correctly guessed the majority of the currently known modifiable risk factors for dementia, such as poor diet and lack of cognitive activities. Participants also had suspicions and questions about other possible risk factors for dementia, such as sleeping behaviour, stress, traumatic experiences and mental wellbeing: ‘and mental wellbeing also has an effect, if you have a positive attitude? […] and stress?’ What about sleeping?’ (female, 61 years). Furthermore, several participants believed that a regular check of cholesterol, blood pressure and diabetes could also contribute to dementia risk reduction: ‘Yes, and what we can do about it? Well, be watchful and check often’ (male, 50 years). All the identified risk factors by the group are presented in Table 2.
Table 2
Identified risk factors for dementia by the focus group participants
Non-modifiable risk factors | Modifiable risk factors | Modifiable risk factors (suspicions) |
Age | Poor diet (e.g., salt) | Sleeping behaviour |
Genetics | Physical inactivity | Stress |
Family history | Smoking | Traumatic experiences |
| Alcohol use | Mental wellbeing |
| Cognitive activities | |
| High cholesterol | |
| Hypertension | |
| Diabetes | |
| Cardiovascular diseases | |
The majority of the participants indicated that most of their knowledge was gained from the internet, family and friends or a caregiver in healthcare. Participants indicated that their general practitioner only provided minimal information about heritability: ‘I have discussed it with my GP, who gave me very little information. He said we can do a test or something (…), but otherwise he didn’t give me much information’ (female, 49 years). Overall, the participants were eager to receive more information on dementia and dementia risk reduction.
Beliefs and attitudes towards dementia risk assessment and dementia risk reduction
Initially, most participants believed that a dementia risk assessment is a genetic test that shows the chance of developing dementia later in life. Given that they were unaware or uncertain about the opportunity to reduce their risk of developing dementia, most participants were also uncertain whether they would want to have their dementia risk assessed. Some participants indicated that they would like to have their risk assessed and subsequently reduce their dementia risk, but they were uncertain about whether this was possible. Their beliefs and attitudes towards dementia risk assessment and dementia risk reduction are reflected in their motives to assess dementia risk and reduce their dementia risk, which are shown below.
The most frequently mentioned motive to assess dementia risk was the possibility of acting upon the outcome of a risk assessment: ‘I would only want it if you know you can do something about it because otherwise it’s just a dark cloud hanging over your head’ (female, 26 years). Another motive was the optimism of having a treatment to cure dementia in the future: ‘I would also like to know because I’m now confident that medication will be available in a few years’ (female, 27 years). Several other motives to assess and reduce dementia risk were mentioned after providing the participants with information regarding dementia risk reduction. One of these motives was to adopt healthy behaviour for dementia risk reduction to age healthily: ‘Yes, I would do anything for it. I want to grow old in good health’ (female, 52). Additionally, the possibility of still turning the tide of the development of dementia was a motive: ‘I would like to know that. I think, well, I hope that I can still do a lot to turn the tide and do all sorts of things to stretch it out as long as possible’ (female, 60 years). Another participant added that there is no harm in trying: ‘Yes, I feel like this can’t really hurt. Maybe there is something in what they say. Oh yes, … I don’t know, really, do something with your life, drink less alcohol. I don’t know, but well, it doesn’t hurt to try’ (female, 26 years). Some participants found it already valuable to obtain insight into their health and lifestyle: ‘I’m a bit of a control freak. I’d like to know’ (male, 50 years). Another motive was ‘to have self-control’: ‘I very much want to stay in charge (…) that is most important to me. That’s why I would like to know (…). I am the kind of person who would opt for euthanasia at the final stage’ (female, 60 years). Finally, one participant also mentioned their current cognitive health as a motive to adopt a healthy behaviour for dementia risk reduction: ‘I’d say yes because I forget a lot of things even now; I sometimes wonder what I did this morning’ (female, 60 years).
Nevertheless, participants also mentioned several motives not to assess and reduce their dementia risk. A frequently mentioned motive not to assess dementia risk was that they are still young, and this would be something to consider in the future: ‘No, I think in 20 years, or 30’ (male, 50 years). However, one of the participants noticed that it could be possible to suffer from dementia already at her current age: ‘But, yes, that’s a bit funny. I think, you know, I’m 60, but that’s nonsense, of course because there were 60-year-olds in my mother’s nursing home’ (female, 60 years). Furthermore, the participants indicated that the outcome of a dementia risk assessment would cause restless feelings or anxiety given that it is unknown when symptoms will appear and how severe the symptoms will be: ‘and then you’re done for. Then, you may be living with a cloud over your head, but when and how, you don’t know’ (female, 59 years). They also indicated that the outcome of the dementia risk assessment does not provide certainty that they will develop dementia: ‘Yes, and maybe you’re not even sure’ (female, 59 years). Another participant added that a healthy lifestyle is no guarantee to prevent dementia: ‘no matter how busy you are, those very active people, they get it too, yes’ (female, 61 years). Finally, the participants believed that the ultimate choice is a balance of interest between enjoying moments in life and having a healthy lifestyle: ‘You have to weigh up the interests, I think. So I think that I would consider something like, wow, I am enjoying myself so much now, I will have a drink now and then maybe have a week less later on’ (female, 50 years).
Requirements for a dementia risk reduction program
The participants expressed their need for more information on dementia and dementia risk reduction and would like to receive this information in a dementia risk reduction program. However, their choice to participate in a dementia risk program also depends on the content of the program, intensity of the program, type of advice given in the program, outcome measure of the program and specific functions of the program. They mentioned several requirements for a dementia risk reduction program, which are presented in Table 3.
Table 3
Requirements for a dementia risk reduction program
Requirements |
Central point of reliable, clear and up to date information about dementia and dementia risk reduction |
Regular check-ups with an easy interpretable outcome measure and amenable for acting on (e.g., revealing room for improvement in lifestyle) |
Personalized lifestyle advice, including the benefits of adhering to the advice |
Not too time consuming. The intensity of the program should not avert enjoying life next to a job and care of parent(s) |
Possibility to share information with siblings |
Easy accessible (e.g., without having to ask the general practitioner) |
Regular reminders by for example text messages |
Adopting a healthy behaviour is their own responsibility and independently performed without the help of healthcare providers |
Should cause no guilt feelings when not adhering to the lifestyle advice |