Multidomain Dementia Risk Reduction in Primary Care is Feasible: A Proof-of-concept study

Demographics

Sex, age, marital status, and level of education were surveyed. The participants’ area-based neighborhood socioeconomic status (SES) was determined based on their four-digit postal code. Every postal code in the Netherlands has an assigned measure of SES, which is determined based on the financial welfare, educational level, and recent employment history of all private households within this postal code. This measure was obtained from Statistics Netherlands (25). Neighborhoods with a score < –0.1 were categorized as low SES, whereas neighborhoods with a score > 0.1 were categorized as high SES. Neighborhoods with scores between –0.1 and 0.1 were categorized as middle SES [20].

Lifestyle factors and health conditions

LIBRA is a comprehensive modifiable dementia risk score summarizing the presence or absence of 12 modifiable risk and protective factors into one numeric value and has been extensively validated to predict cognitive decline, incident dementia, and biomarkers of brain damage [21–26]. Here, the total LIBRA score and underlying individual risk and protective factors were used as outcome measures [27]. Lifestyle factors included in LIBRA were assessed at baseline and follow-up using questionnaires. Items on smoking behavior, alcohol consumption, body height and weight (to calculate body mass index (BMI)) were included [28]. Low-to-moderate alcohol consumption was defined as adherence to the Dutch guidelines of maximum seven standard units of alcohol per week [29]. Obesity was defined as a BMI≥30 kg/m². Physical activity level was assessed using the European Prospective Investigation into Cancer and Nutrition (EPIC) physical activity questionnaire [30]. Participants were then considered physically inactive if they were inactive or moderately inactive based on the Cambridge Physical Activity Index [31]. Lifetime engagement in cognitively stimulating activities was measured via the Cognitive Reserve Index questionnaire (CRIq) at baseline [32]. This scale consists of three subscales: education, working activity, and leisure time. Participants answer since when and how frequent they have been engaged in specific activities during their life, and answers result in a total score commonly ranging from about 70 to 160 [32]. A CRIq score of ≥130 was considered cognitively active. At follow-up, custom items were used that asked about the current frequency of engagement in activities included in the leisure time CRIq subscale, relative to the frequency at baseline. These custom items were used to detect potential changes to cognitive activity engagement over the three-month study period, which is not possible with the original CRIq. Changes to education or working activity over three months were considered unlikely in our study population and thus not included at follow-up. These custom items were summed for every individual and standardized into z-scores. Individuals with a z-score below or equal to –1 (i.e., a one standard deviation (SD) or worse change in leisure time activity frequency than the population mean) got categorized as “low cognitively active” at follow-up. Individuals with a value above or equal to 1 (i.e., a one SD or better change in leisure time activity frequency than the population mean) got categorized as “high cognitively active”. All others got allocated the same category as at baseline. Mediterranean diet adherence was determined using the Mediterranean Diet Adherence Screener (MEDAS [33]). High adherence to the Mediterranean diet was defined as having a score ≥8. Depressive symptoms were assessed with the Patient Health Questionnaire 9 (PHQ-9). A score of ≥10 was used as cut-off [34]. Health conditions (hypertension, dyslipidemia, diabetes, coronary heart disease, and chronic kidney disease) were based on self-reported history of diagnosis and patient health record data. Participants’ blood pressure was measured during the baseline consultation. Measurements of blood lipids, glycemia, and blood pressure at follow-up were also collected if they were available through the participants’ health records. Measurements were considered as baseline measurements if they were collected maximum 6 months before the consultation date and up to two weeks afterwards. Follow-up measurements were considered if they were collected between two weeks after the baseline consultation and up to one year later. A practice nurse of the general practice assembled data on the above listed health conditions and measurements of the participants and transferred these to the research team.

Knowledge on dementia risk reduction

Knowledge about dementia risk reduction was examined via 13 statements (see Supplementary Material 2) which have been used previously [35–38]. Participants could respond on 5-point Likert scale, ranging from “completely disagree” to “completely agree”. Lack of awareness of the potential for dementia risk reduction was defined as agreeing to the statement “There is nothing one can do to reduce their risk of getting dementia”. All other statements surveyed knowledge of specific modifiable dementia risk and protective factors. Knowledge of dementia risk reduction was operationalized by assigning scores to each of the 13 statements and taking the sum. With “complete agreement” to a correct statement, four points were assigned to the participant’s score. With “agreement”, three points were assigned, and so on. Complete disagreement to a correct statement led to zero points being assigned. For the general (incorrect) statement on dementia risk reduction, the scoring was the inverse to that described above.

Other measures

Custom items on lifestyle changes, facilitators and barriers towards it, and social-cognitive determinants of behavior (i.e., attitude, self-efficacy, and intention for a healthy lifestyle) were included in the online surveys. The follow-up survey also probed for experiences with, and perspectives on, the PCP consultation, the discussed personal dementia risk reduction profile, and the MyBraincoach app, in order to assess acceptability and demand for the intervention. In addition, objective app usage data was available as the number of activated themes and the total opened daily notifications in MyBraincoach app. Participants in the app-supported arm were categorized into low intensity users and high intensity users based on median split by total opened daily notifications.

General view on participation and discussion of the dementia risk factor profile

Most interviewed participants indicated they were happy to have participated and found participation easy. On the content of the intervention, opinions differed. Some participants found the information they received during the consultation and within the app interesting, whereas a few others found the information too basic and indicated they did not learn a lot of new things. A couple of participants also mentioned they would have liked more information on dementia itself, its early signs, and the current “condition” of their own brains. Regarding the consultation with the PCP, most interviewees indicated they were satisfied with its content. However, even though the PCPs were instructed to set personal lifestyle goals with the participants during the consultation, some of the interviewed participants said this did not happen and they instead got more general advice. This appeared less valuable to them. Other participants emphasized that it is important to them to take their personal situation, values, and goals into account during such consultations. They also mentioned that discussing dementia risk reduction with their PCP resulted in an increased awareness and gave them an extra stimulus to make lifestyle improvements.

(male, high education): “And that is indeed another contribution. You hear again ‘exercise is good’, ‘moving three times a week is good’, ‘eating healthy is good’, ‘what is healthy eating’, ‘what do you eat then: a lot of vegetables, a lot of fruit, you know, not too much fruit because there are a lot of sugars in there’, that kind of stuff. All that information, you indeed become aware of again. ‘Keep it up.’ And I was already occupied with that, but it did give me an extra push to keep up.”

Most participants indicated they enjoyed the personal contact, and many appreciated a scheduled follow-up consultation. Almost all interviewed participants who did not get offered a follow-up consultation mentioned that they would have liked this to monitor their status and evaluate any efforts made, ideally six to twelve months after the initial consultation.

(male, high education): “What I missed is another check-up with the GP. To discuss the progress, like ‘how is it going?’, ‘stick to your goals’. Because now, it just was that app, and alright, there are goals in there, which you try to focus on, but I think for some people, for me as well, an incentive to keep this commitment is needed, and you need a follow-up consultation to make sure things are happening.”

Other suggested improvements included regular health check-ups from a certain age and the provision of a small report of what was discussed during their consultation to take home.

The MyBraincoach app

On the smartphone app, most participants felt like it helped them to stay focused on their lifestyle goals, even if the info within the app was already known. They said the app offered nice little nudges or triggers after the initial consultation with the PCP.

(male, intermediate education): “Yes exactly, I always used to think it just happens to you, but actually you can do something yourself with your lifestyle, so that if you do get it, that it happens as late as possible.”

Some participants suggested that further personalization of the app would be nice. Some wanted more tips, recipes, or indicated that a video or more visual content would be appreciated. Two interviewees mentioned they would like to monitor their lifestyle within the app, along with advice that matches this personal data, or the potential benefit that you may attain if you make certain changes. Lastly, some participants wanted a more general theme on dementia to be included in the app.

Lifestyle changes

Certain participants reported they made lifestyle changes because of, or supported by, the intervention. One interviewee bought a blood pressure monitor, another improved their diet (e.g., more olive oil, less meat, more fish, more nuts), and yet another implemented more moments for relaxation.

(male, intermediate education): “We actually, when we got the app, I looked at it together with my wife and it indicated that body weight was a theme for us. So, we looked together what this actually means. Because of this, we said ‘let’s pay some more attention to our diet’, to live a bit healthier.”

(female, intermediate education): “Now I always use olive oil to fry things and I also started using [a brand of margarine]. It’s more expensive but has omega 3. Also, moving a bit more. My husband doesn’t have high cholesterol anymore. I get my results in a couple weeks and I’m curious if mine also improved.”

Some interviewees indicated they felt as if the app gave them an extra stimulus to change a certain behavior as they were now aware it was also beneficial for their brain health. However, some interviewees also reported they did not make any lifestyle changes.

Barriers and facilitators for behavior change

Participants mentioned several facilitators and barriers for lifestyle changes. Facilitators included professionals support, support from the people around them, accurate risk perception, intrinsic motivation, more free time, and seeing progress. Aging was also mentioned as a facilitator, as some participants indicated they became more aware of their health, dementia, and asked themselves what they still wanted to do with their lives, which according to them could trigger positive change. Several interviewees also mentioned that follow-up visits, during which your personal progress is evaluated, are helpful towards change. Lastly, discipline or “just doing it” was mentioned often. Reported barriers for behavior change were health problems, financial limitations, lack of knowledge and awareness, stress, lack of time, and lack of support from the personal environment.

(male, high education): “Yes, we are currently busy starting up a factory. So, with that comes a bit of stress of course. I do notice that in my diet. So, if I have a lot of stress, I’ll choose less good food options more often, and I’ll definitely eat more.”

General view on discussing dementia risk reduction during a consultation

None of the four interviewed PCPs had discussed dementia risk reduction or brain health with patients before this study. They reported the consultation took about 20–30 minutes, and this worked well for them, although two PCPs also pointed to a general lack of time. The PCPs’ experiences were overall positive. Especially the fact that the modifiable risk factors for dementia are already routinely discussed as part of cardiovascular risk management resulted in them concluding that it would be of added value to bring up brain health, and easy to implement this in primary care. Two PCPs specifically mentioned that they already discussed all the themes relevant for brain health promotion, just without referring specifically to the fact that this may also lower the risk for dementia.

“No, I don’t think it would take up a lot of additional time if it [the topic of brain health] gets added to our standard discussion points. I already ask patients routinely about their social contacts, loneliness, hobbies. I actually already discuss these topics. So, I think it would be a small effort to take on the topic of brain health.”

Three PCPs mentioned they noticed improvements in their participating patients in terms of behavior, motivation, or awareness. One PCP reported one of their patients with diabetes finally agreed to start with insulin, and because of this now has good glycemic values. The PCP thought that participation in this study and the mention that good glycemic control is beneficial for the brain, may have triggered this change. Two PCPs emphasized the increased awareness of their patients.

“This also opened people’s eyes a little bit. You know, people would respond like ‘Oh yes, I don’t engage in physical activity that much’ or ‘I should read a book a bit more often.’ Yes, it inspired them.”

Needs and wishes for effectively discussing dementia risk reduction with patients

Three PCPs reported they appreciated the brain health profiles that were made for them to use during the consultation as it facilitated the conversation. In general, they find conversation starters, especially ones that are visual and simple, very helpful. One PCP said her patients sometimes did not recognize themselves in the brain health profile, which then made the consultation more difficult. Two PCPs emphasized the general importance of being face-to-face with a patient to properly connect with them to facilitate behavior change. In addition, follow-up visits were important according to two PCPs to continue monitoring and evaluate progress.

Two PCPs mentioned they often give their patients something to take home. Two PCPs liked online materials such as an app or website, whereas one other PCP preferred hard-copy materials. One PCP specifically reported that a visual chart to be used during the consultation would be very useful, aiming at improving risk perception, what can be done to reduce risk, and even better if it can show the risk reduction in a more tangible way (e.g., disease free life years). When asking the interviewees what they thought about a brain health promotion smartphone app, all PCPs were very positive about referring their patients to an app like this and thought their patients would be interested to use it. One PCP added she thought apps were especially used by more highly educated patients and less so by low-educated patients, who according to her, preferred simple, visual printed materials.

“But that would be really nice for us to know that this app exists, we can download it and then have a look and see if it may be fitting for some people and then we can offer this [to patients].”

All PCPs indicated they would like to receive education on the topic of dementia risk reduction. For example, covering how important genetics are within the total risk, or how important each modifiable risk factor is. They prefer this education to be face-to-face in group as this allows them to discuss what is learned with colleagues.

Discussing dementia risk reduction in general practices in low socioeconomic settings

One interviewed PCP worked at a general practice in a low socioeconomic setting. Her view differed from the other interviewed PCPs. According to her, implementation of brain health promotion or dementia risk reduction in the practice where she worked would be overly ambitious. Specifically, she stated that her colleagues and she were already happy if their patients showed up for their appointments or took their medication as prescribed. According to her, looking further ahead with something like dementia risk reduction aims too high, as a lot of their patients simply have other issues or struggles that make it difficult to care about things (far) in the future.

“Yes, there are people with a debt management plan, people without a job, people going through a divorce, people from different cultural background so that makes things very different then. They don’t think beyond the now.”