Qualitative Analysis of the Cognition and Flow (CoGFlowS) Study: An Individualized Approach to Cognitive Training for Dementia Is Needed

Abstract

Background:

Cognitive training (CT) may have benefits for both healthy older adults (HC) and those with early cognitive disorders [mild cognitive impairment (MCI) and dementia]. However, few studies have qualitatively evaluated home-based, computerized CT programs.

Objective:

We present the qualitative arm of a feasibility randomized controlled trial evaluating a CT program for HC and people living with MCI or dementia.

Methods:

Participants underwent semi-structured interviews after 12 weeks of CT. Where possible, participants were interviewed with their carers. The interview schedule and analysis were underpinned by the health belief model. Interviews were audio-recorded, transcribed, open-coded, and categorized into themes. The analytical framework was developed, and themes were condensed under five major categories: benefits, barriers, threat, self-efficacy, and cues to action.

Results:

37 participants underwent interviews. CT was feasible and acceptable to participants. Benefits included: enjoyment, improved awareness, benchmarking cognitive function, reassurance of abilities and giving back control. Barriers were more prevalent among those with dementia: problems with technology, frustration, conflict between patients and carers, apathy and lack of insight, anxiety or low mood, and lack of portability. HC and MCI perceived the severity of dementia risk as high, partially mitigated by CT. Participants living with dementia valued a more individualized approach to training, accounting for baseline characteristics.

Conclusion:

CT was a feasible intervention for HC and people living with dementia and MCI. Benefits were present, but the identified barriers need to be addressed for CT to be implemented successfully.

Keywords

Alzheimer’s disease cognitive dysfunction healthy aging mild cognitive impairment

INTRODUCTION

Cognitive training (CT) is a structured, guided program of repeated practice on standardized tasks designed to target specific cognitive domains [1]. Recent systematic reviews and meta-analyses suggest CT may improve cognitive function in healthy older adults and those with early dementia and mild cognitive impairment (MCI) [2 –4]. As a non-pharmacological intervention, CT may be attractive to patients owing to the limited potential for side-effects [5]. However, successful implementation requires sufficient engagement, commitment, and motivation from individuals [6]. Therefore, it is important to demonstrate that opportunity costs to the individual are offset [7]. Thus far, the majority of studies have quantitatively investigated the effectiveness of CT [2 –4], or the mechanisms by which it may induce neuroplasticity [8]. It is important to understand the views, perceptions, and beliefs of individuals which may moderate their interaction and engagement with CT, and thus modulate efficacy [6]. The majority of CT programs have been developed in healthy populations, but the barriers to successful engagement may differ considerably for those living with cognitive disorders [9]. Qualitative studies of psycho-social interventions for dementia have found benefits for people living with dementia [10]. The majority of these studies evaluated facilitated or group-based therapies such as: cognitive stimulation therapy, cognitive rehabilitation, and reminiscence therapy [10]. Computerized home-based CT is increasingly researched given its flexibility, portability, and lower associated costs, time, and travel demands [11]. This may come at a cost of reduced effectiveness, as it requires motivation and commitment to maintain adherence [2, 12]. Furthermore, the ability to conduct remote assessments and interventions has become increasingly important in the context of the COVID-19 pandemic. Few studies have qualitatively analyzed the barriers to implementing home-based computerized CT programs in those with cognitive impairment, and the challenges may be distinct from those associated with group-based programs, and those conducted in healthy populations [9, 13]. Previous studies have evaluated home-based computerized CT in healthy older adults and MCI [11], and cognitive impairment associated with HIV and schizophrenia [13]. Thus, qualitative evaluation of home-based CT is needed to help inform the timely design and implementation of effective CT programs for healthy older adults and people living with dementia.

The aim of this study was therefore to qualitatively evaluate a home-based, computerized CT program for healthy older adults and people living with MCI or dementia, and to qualitatively investigate the results obtained in the quantitative phase (explanatory sequential mixed methods study). A healthy comparator group was specifically included to facilitate comparisons with those with cognitive disorders in terms of the barriers, and to understand how cognitive interventions that have been developed for healthy populations may require adapting and tailoring for those with cognitive disorders. This study sought to identify the experiences and perceptions of participants undergoing home-based CT, and the barriers to successful program engagement in the context of the health belief model (HBM) [14].

METHODS

Study design and sample selection

This was the qualitative phase of an explanatory sequential mixed methods research study [15]. The quantitative phase was a feasibility randomized-controlled trial of CT in healthy older adults, and people living with MCI and Alzheimer’s disease (AD), which has recently been published [16]. The final data integration phase of the mixed methods study is ongoing and will be reported when completed. Figure 1 summarizes the structure of the mixed methods research study and the relationship between the phases. Healthy older adults were included as a control or comparator group in both the quantitative [16] and qualitative strands of the study. Participants in the training arm of the trial were offered the option of a focus group or semi-structured qualitative interview at the end of the 12-week training period. Where possible, carers for people living with dementia or MCI were recruited and interviewed as dyads. Thus, this was a convenience sample, and size was limited by overall recruitment to the trial, but data saturation was reached for the majority of themes. Participants who did not complete the training or dropped-out were also eligible to be interviewed in the qualitative study. Participants were recruited between March 2019 and April 2020. Figure 2 summarizes the recruitment process. The study had ethical approval from the Bradford-Leeds research ethics committee (ref: 18/YH/0396), and study procedures were conducted in accordance with Declaration of Helsinki. All participants provided written, informed consent or personal consultee declaration where participants lacked capacity. This study was conducted and reported in line with guidance on qualitative research [17].

Fig. 1

Schematic diagram of the CogFlowS study summarizing the explanatory sequential mixed methods design, and stage of quantitative (QUAN) and qualitative (QUAL) data collection and integration.

Fig. 2

Recruitment flow chart for the study. Participants who dropped out were eligible for interview in the qualitative study. Where possible carers were interviewed alongside participants with a diagnosis of mild cognitive impairment (MCI) or dementia (Alzheimer’s disease; AD). In this instance, one interview transcript was produced per dyad.

Study specific inclusion criteria were as follows: healthy controls were free of any medical co-morbidity or medication that could adversely affect cognition (e.g., stroke, brain tumor, sedative drugs), MCI (NIA/AA or Petersen criteria), or AD (NIA/AA 2011 criteria) with mild to moderate deficits (Montreal Cognitive Assessment score of > 9), willing to participate, capacity to consent to the study or personal consultee, patients on and off anti-dementia medications were included (acetylcholinesterase inhibitors, glutamate receptor antagonists), good understanding of written and spoken English, age≥50 years, access to the internet and a computer/laptop. Exclusion criteria were defined by the larger quantitative trial and confined to major medical co-morbidities [severe heart failure (ejection fraction < 20%), carotid artery stenosis, severe respiratory disease, major stroke] which are known to affect cerebral blood flow (a key outcome in the main trial). In addition, participants already enrolled into other interventional studies were excluded.

Intervention

The protocol for the study has been published previously [15]. In brief, participants were randomized using sealed envelope©, with a block-size of four and stratified by patient group. Participants were asked to train for 30 min, five times per week for 12 weeks. The CT program was an online based, multi-domain software program provided by Lumosity©. Exercises were selected to cover five core cognitive domains (attention, verbal fluency, language, visuospatial, and memory) assessed in the quantitative arm of the trial [15]. Full details of the program can be found in the pre-published protocol and quantitative trial results [15, 16]. The program was adaptive, such that the difficulty increased incrementally according to participant performance. It was anticipated that at the initial levels, the majority of participants (including those with cognitive disorders) would be able to engage with the CT program. However, feasibility of the intervention across the three groups was a key research question. The program was only available on a desktop computer or laptop, not on a tablet or smartphone due to lack of compatibility with these devices. Participants used their own computers and laptops. Although loans were available, none were required for the purpose of the study. Participants were provided with a demonstration of the CT program at the end of the baseline assessment. A set-up guide and troubleshooting information for commonly occurring issues was provided for the participant to access the CT program at home. Where participants were unable to set-up the training at home, a researcher (LB) undertook a home visit to arrange the training. Thereafter, a weekly telephone call or email was provided at the participant’s preference for support and to troubleshoot any issues that arose with the training program. A number of technological issues arose which were resolved through Lumosity© as the study progressed.

Philosophical positions

The CogFlowS study assumes a position of multiple worldviews; a postposivitism approach was adopted for the quantitative outcome measures [16], whereas a constructivism approach was used for the qualitative aspects of feasibility, and the barriers and facilitators to CT. The final position assumed by this study was pragmatism, which was applied to the mixed methods analysis of this study (unpublished data) [18 –20]. Multiple worldviews allow the researcher to assume multiple stances taking both biased and unbiased approaches; delivered in this study through a mixture of quantitative and qualitative techniques [20]. In the pragmatic approach, the research questions are prioritized [18 –20], therefore a practical approach was taken to guide methodological choices to answer the research questions in this study. The pragmatic or multiple paradigm positions lend themselves better to studies of feasibility which often combine both qualitative and quantitative methods. This facilitates a practical approach to understanding the success or nature of a trial, puts feasibility as the primary focus, and allows the researcher to utilize multiple methods and resources to meet this aim.

Conceptual framework

The use of a conceptual framework remains contentious among qualitative researchers, though when used appropriately, it can strengthen the quality and rigor of the research [21]. Here, the health belief model (HBM) was used as the core theoretical framework to underpin the research questions, the design of the interviews and focus groups, and to form the foundation of the analysis and reporting of the results of this study. The application of CT in practice requires both motivation and time commitment, and therefore a significant change in behavior to adopt the intervention into daily life. Thus, a framework reflecting the complexity of behavior change was used to construct the qualitative aspect of the study. The HBM was first described by Becker et al. in 1974 in order to model preventative health behaviors in the United States, and to successfully design and implement interventions to target behavioral change [14]. The HBM is composed of six core constructs (Table 1, Fig. 3) [14]. An updated version of this model was developed by Rosenstock in 1994, who added the perceived threat (sum of severity and susceptibility), taken as an indicator of motivation to avoid particular outcomes, and expectations (sum of benefits, barriers, and self-efficacy), taken as an indication to the extent or motivation toward a given action [14 , 23]. The HBM has been used across a range of disciplines to study and understand preventative health behaviors, including: infectious diseases, vaccination, and chronic disease [22 , 25]. The HBM is not the only available model for behavioral change. In a scoping review by Davis et al. [26], 82 different theories were identified for modelling behavioral change. Among the most frequently studied were: Social Cognitive Theory, Theory of Planned Behavior/Reasoned Action, and the Transtheoretical Model of Change [26]. The HBM does have a number of limitations, namely, a lack of predictive power, poor construct definition, and inconsistent application [24, 27]. However, a recent review by the National Institute of Health and Clinical Excellence (NICE) suggested that when applied systematically, the HBM can provide a comprehensive model for understanding behavior change [27]. Currently, guidance is lacking on the most appropriate model to use, with limited evidence for any model in informing behavioral interventions, and this choice remains largely at the discretion and preference of the researcher [26].

Table 1

The six constructs of the health belief model [14]

	Health belief model constructs
1.	Risk susceptibility
	The subjective perception of the risk the individual is at from a state or condition.
2.	Risk severity
	Subjective evaluation of the seriousness of the consequences associated with the state or condition.
3.	Benefits to action
	The subjectively understood positive benefits of taking a health action to offset a perceived threat. This perception will be influenced not only by specific proximal factors, but an individual’s overall ‘health motivation’.
4.	Barriers to action
	The perceived negatively valued aspects of taking the action or overcoming anticipated barriers to taking it.
5.	Self-efficacy
	Act or task specific self-confidence, i.e., belief in one’s ability to execute a given behavior.
6.	Cues to action
	Reminders or prompts to take actions consistent with an intention, ranging from advertising to personal communications from health professionals, family members and/or peers.

Fig. 3

The health belief model adapted from [44].

Researcher position, reflexivity, and rigor

The main research priority was the quantitative evaluation of the randomized trial, and we acknowledge that the post-positivism approach will have fed into the design and evaluation of the qualitative strand of this study. To mitigate against this, and to ensure qualitative rigor throughout the study conduct, a primarily qualitative researcher (RE) objectively reviewed the design, analysis, and interpretation of the study. Furthermore, to mitigate against the risk of bias presented by one researcher (LB) conducting all of the quantitative and qualitative analysis in this study, the analysis and interpretations were independently reviewed by RE.

Interviews

Focus-groups were not conducted due to lack of participant interest and insufficient numbers completing the training at similar times. The interval schedule was underpinned by the six core constructs of the HBM: perceived barriers, perceived benefits, self-efficacy, cues to action, perceived susceptibility, and perceived severity (Fig. 3) [14]. Interviews were conducted by LB in participant’s homes, or at their follow-up visit to the Cerebral Haemodynamics in Ageing and Stroke Medicine research space at the Leicester Royal Infirmary. Where possible, participants with a diagnosis of dementia or MCI were interviewed jointly with their carers as a dyad. Thus, each dyad resulted in one interview transcript. A topic guide was developed by two researchers (LB & RE) to prompt topics that needed to be discussed and was framed around the HBM. Development of the topic guide was an iterative process, and concepts which emerged from the initial interviews were subsequently incorporated into later interviews. The topic guide was modified as appropriate to the context of the conversation during the interview. The topic guide can be seen in the Supplementary Material. Due to COVID-19, three interviews were conducted remotely by video-link. Interviews were recorded using a digital audio recorder, and notes were made on non-verbal and paralinguistic clues. Interviews were approximately 20–30 min duration.

Data analysis

The findings from the semi-structured interviews were evaluated using framework analysis [28]. The digital recordings of the interviews and focus groups were transcribed verbatim, the transcripts were read in detail, i.e., line-by-line, and open codes were formed categorizing and conceptualizing the responses and identifying the major themes. The coding of the first few transcripts was checked by a second researcher (RE) to ensure consistency in coding.

Following this initial coding the analytical framework was developed; this was an iterative process and developed through coding of additional transcripts. Once the final transcript was coded, the analytical framework was used to generate the framework matrix. The framework matrix was developed in NVivo 11 (QSR International) and allowed for the recognition of patterns and outliers within the data. Transcripts were reviewed by participants for accuracy (respondent validation) [29]. All participants had only few, or minor, corrections to the transcripts.

RESULTS

Thirty-seven participants (10 healthy older adults, 4 MCI, 5 AD, 9 carer-patient dyads [2 MCI, 7 AD]) completed semi-structured interviews. Three of these participants dropped out early from the main trial but were still invited to and completed the interviews as patient-carer dyads. The mean age of participants who completed the training was 68 years and 39%were female. The baseline characteristics and main trial outcomes for the training group are summarized in Table 2. Of the 28 transcripts, 25 responses were received from participants, with all having no or minor changes. There was consistency between carer and participant coding. Results are presented according to the six main constructs of the HBM.

Table 2

The baseline characteristics and major trial outcomes of participants who completed the CT program and semi-structured interviews for the qualitative study. Data are mean±standard deviation (SD), or number (percentage). Data for post-intervention are delta change from baseline scores. MCI, mild cognitive impairment; ACE-III, Addenbrooke’s Cognitive Examination III; DEMQOL, Dementia Quality of Life; GDS-15, Geriatric Depression Scale (15 item); IADL, Instrumental Activities of Daily Living

Demographics /outcome	Healthy	MCI	Dementia
n	10	6	12
Mean age (y)	63.0±7.1	69.8±11.4	71.2±8.2
Sex (n, %female)	6 (60)	2 (33)	9 (75)
Ethnicity (n, %Caucasian)	10 (100)	6 (100)	12 (100)
Education (y)	18.5±3.6	14.8±3.3	14.4±3.5
Mean±SD Pre-intervention
Cognition (ACE-III)	97.2±2.8	91.3±6.5	77.2±13.5
Quality of life (DEMQOL)	106.4±5.9	90.8±8.3	94.5±12.0
Mood (GDS-15)	0.8±0.6	3.3±1.4	2.8±2.9
Everyday activities (Lawton IADL)	8±0	7.7±0.5	5.4±1.9
Mean±SD Δ change Post-intervention
ACE-III	0.2±1.6	0.2±3.9	2.1±4.8
DEMQOL	1.5±2.7	2.7±6.4	2.4±7.7
GDS-15	–0.1±0.7	–1.0±1.3	0.3±1.8
Lawton IADL	0.0±0.0	–0.3±0.5	0.3±1.3

Perceived barriers

Overall, there were a number of barriers identified from the semi-structured interviews. Barriers common to both healthy and patient groups included: difficulty with the instructions, poor visual acuity, dexterity, and arthritis (particularly for exercises requiring speed), environmental distractors, technical issues, fatigue, learning curve. Problems with technology, in particular, could cause significant frustration, and hamper motivation and engagement. Participants felt they needed greater support, and there was a sense of futility when problems were encountered:

“the frog leap one I found that really kind of frustrating because even though I felt that I was doing what I was supposed to, it wasn’t picking up and I had to keep repeating it over and over again, and then I felt that was soul destroying for me because I kind of felt that I was following but effectively it was saying that I wasn’t” –p7 (MCI)

Frustration was commonly reported by all participants and was related to: problems with technology, difficulty with certain exercises, less enjoyable exercises, inability to improve or progress, and insufficient instructions.

Three participants dropped out of the training program with a diagnosis of dementia, but there were no drop-outs among the healthy or MCI groups. Barriers were high among the three drop-outs, in particular, high levels of anxiety and stress, apathy, and problems with technology were present among these participants. These barriers are now discussed in more detail.

Compared to participants with a diagnosis of dementia, the majority of healthy participants found the program user-friendly and straight-forward. However, healthy participants felt the instructions could be improved, particularly information on scoring of the exercises:

“I wouldn’t say difficult. . . but they don’t describe it fully. . . they certainly don’t go into how the thing is scored, whether it’s against the clock or not.” –p4 (healthy)

For healthy participants, time and work commitments were a key barrier to training, and more-so than in the participants with dementia. Participants were often fatigued after work, and this hampered engagement:

“I think I managed to do three a week, each week, but it wasn’t always that easy. . . ecause I’m working often the only time I can do the training is kind of in the evening and that’s meant I’m sometimes a bit tired by the time I get to it” –p10 (healthy)

The lack of portability in the program prevented healthy participants from being able to “train on the go”. Certainly, flexibility to fit the program in around their schedule was an important priority for older adults and fixed or facilitated sessions were less acceptable to participants.

Participants recognized that trying to complete the program while tired or over-practicing exercises could affect their performance and be counter-productive, particularly where that did not translate into improved performance:

“yeah I think it made myself more aware of the fact that actually I’m tired, I’m not focusing I’ve got something else on my mind and I guess it raised my level of awareness of that side of things” –p10 (healthy)

Participants noted there was a learning curve, but that over time their understanding and thus performance and enjoyment improved with practice:

“I got less frustrated with it as I went on. So why was I frustrated? It was new, I think probably most people would get frustrated with a new computer system when they first use it and I don’t really know what it is it wants you to do and so in that sense it was frustrating, certainly, the anxiety of doing the training got less and less with time” –p4 (healthy)

Participants with dementia reported finding the instructions “confusing”, and the exercises were not always intuitive. In particular, reminders of the instructions throughout the exercises would have been beneficial:

“mainly when you couldn’t remember what you were doing because it tells you at the beginning what to do and then you get onto the game and then you get confused, you forget what its told you so it doesn’t jog your memory what to do, you just have to keep going and hope you get it right” –p11 (AD)

Pre-morbid education levels and computer literacy were lower among participants with AD and MCI than healthy participants, and limited engagement with, and understanding of, the program for some participants.

In keeping with healthy participants, the majority of participants with dementia also preferred a flexible, home-based program. However, this was associated with fewer social benefits, and increased friction between participants and their carers which some felt may be reduced with group or facilitated sessions:

“I just wonder whether if this was conducted in a room. . . where people got together apart from their families because I think though [patient] is really good with the kids, he tends to get annoyed with me if I’m trying to get him to do something” –carer for p12 (AD)

Although portability was a priority for healthy participants, this was less important for participants with AD or MCI, who were more familiar with a desktop computer than tablets or smart phones. In addition, working on a computer reduced barriers for those with lower visual acuity and arthritis:

“because my eyesight is no longer a hundred percent I’m quite happy on a computer. I’m more at home at doing it on the computer, the small keys on my mobile, you know” –p9 (MCI)

Compared to healthy participants, exposure to and proficiency with technology was more variable among participants with dementia or MCI, and was a barrier to successful engagement, particularly with time-based exercises:

“you found some of them too fast for you to coordinate the mouse or the keyboard. The speed was just a bit fast sometimes” –carer of p26 (AD)

Compared to healthy participants, the “learning curve” was more challenging for participants with dementia, and many struggled with adapting to new situations and acquiring new skills. For a minority of participants with dementia (n = 3), difficulty with completing the exercises were insurmountable and led to negative feelings, reduced self-esteem, and ultimately drop out from the program:

“Carer: You just couldn’t pass them. Couldn’t pass the exercises could you? So it made you feel a failure that you couldn’t cope with the exercises.

Patient: I don’t know about that. Or maybe I just didn’t want to. If you like I’ve given up.” –Carer and p2 (AD).

Participants with a diagnosis of AD had more variable effects to mood than healthy participants or those with MCI; ranging from positive effects, to mild annoyance or irritation, to significant anxiety and stress resulting in drop-out from the study:

“I think like with the word one, a bit depressed because I thought I should be able to do these and that gets me down because I think it’s hard, I think there’s something wrong with me” –p11 (AD)

For participants with AD, apathy, lack of insight, and severity of the dementia could be significant barriers to engaging with the training program. Two participants were unable to complete the study, in part due to lack of motivation, and dementia severity:

“Motivation is something that’s really gone, you know, motivating [patient] to do a lot of things isn’t as easy as it used to be” –carer for p12 (AD)

Perceived benefits

Although barriers were present, there was a high completion rate of the program (25 out of 28 participants completed), and a number of benefits were identified by participants: enjoyment and interest, benefit to self or others, learning new skills, visible progress, entertainment, taking back control, relief and reassurance, benchmarking, maintaining an active mind, and improved awareness.

In particular, enjoyment was a common feature to those who completed the program and participants identified a sense of benefit either to others by improving knowledge through research or to themselves by participating and completing the program:

“I definitely felt that it improved my abilities to think because I had something to think about very hard in those programs” –p17 (AD)

Enjoyment was linked to performance, with participants finding exercises more enjoyable where they performed better or progressed further. Regardless of diagnosis, all participants saw benefit to keeping the mind active, (the “use it or lose it” principle), and akin to “exercising a muscle”. Both healthy and participants with dementia felt the program increased their awareness of areas they struggled with, allowing them to focus on, and improve this domain:

“I think it made me more aware of areas that I struggle . . . I wasn’t concentrating, so that showed me that when I think I’m concentrating I’m not always” –p13 (AD)

Healthy participants and those with MCI were less likely to identify benefits to function than those with dementia, and may have been as a result of a relatively high level of baseline function:

“well I’ve not really got any challenges with my day to day activities really because I’ve got mild cognitive impairment so it’s not the worst part of it” - p5 (MCI)

Few healthy participants or those with a diagnosis of MCI noticed direct effects of the program on their mood, but a number commented on positive feelings they experienced during the program, which tended to be linked with their performance, a sense of achievement, or progression:

“yeah it made me feel quite happy, it made me feel if I’d got a better score I felt that I’d progressed so it made me feel good because I’d achieved something even if it was only ten points more or something. I just felt good because I’d achieved something a bit better” - p16 (healthy)

Participants with dementia were more likely to identify benefits to their memory than healthy participants, which may have been due to greater scope for improvement, but also due to greater “buy in” as a result of higher perceived potential for benefit. In keeping with healthy participants, few people with dementia identified transfer effects or functional improvements. One participant with MCI was able to develop strategies taken from the program and apply them to their daily life:

“I think it has helped me to re-look at things and break it down and do it by its size rather than trying to do what you used to do and do everything in one go” –p7 (MCI)

Unique to participants with dementia, MCI and their carers was a sense of relief and reassurance in their ability manage the program and complete the exercises. Participants used the program to benchmark their current level of cognitive function, and reassure themselves of their ability:

“I was pleased with my abilities, it proved that I was, there was quite a lot there that I could cope with” –p12 (MCI)

Among participants with dementia and MCI, stability of symptoms, and prevention of deterioration, was as beneficial as improvement:

“the path we’re on we understand eventually is downward and the fact that there was no downward progression was good” –carer for p19 (AD)

For participants with dementia, benefits to the program were related to the stage of cognitive impairment, where benefits were seen to be greater for those at an earlier stage of cognitive decline:

“I think the idea’s good, it’s just at what stage you’d get somebody to do it . . . maybe the earlier you did this the better it would be to keep them stimulated for longer” –carer of p12 (AD)

Despite the negative effects on mood described in the barriers section, participants with dementia, also described positive feelings, particularly where they saw improvement, progress, or achievement:

“to see that I was actually achieving something, getting better at certain things than I started off I suppose that’s really the ideal thing is to see an achievement isn’t it?” –p15 (AD)

Finally, for participants with dementia or MCI, completing the program gave participants a sense of control, allowing them to take a positive action against a degenerative disease with few treatment options:

“because you feel you’re improving something and of course you know as you get older things are going to deteriorate and you feel as though you’re doing something to stop that” –p10 (MCI)

Perceived threat (risk susceptibility and severity)

Perceptions of risk susceptibility varied between participants, but was felt to be multifactorial (age, diet and lifestyle, physical and mental activity, sleep, and family history). Participants felt the risk was inevitably high due to the prevalence of dementia, and cognitive decline was considered to be part of “normal aging”. Risk was perceived to be lower in participants with a more positive outlook. Healthy participants and those with MCI felt there was as an opportunity to apply preventative strategies to strengthen their cognition and protect against dementia:

“the main thing is to stay positive and to help yourself now and do everything that you can to even delay that . . . but it’s just making the most of what you have now and strengthening it as much as you can” –p7 (MCI)

Current state of memory was seen to be predictive of future dementia risk, with a better memory being more protective:

“only that my father has severe memory loss and I just think that my memory is not as brilliant as it should be generally so that makes you think I wonder what it will be like in the future” –p7 (healthy)

For all participants, the severity of the risk was acknowledged to be high and was dependent on a number of factors (social support, severity of the dementia, level of insight, early planning and preparation).

Self-efficacy

Developing “strategies” by which to successfully complete or circumvent the exercises was seen as a challenge and motivating factor. The majority of participants were motivated by monitoring their progress and performance through the program, and certainly, perceived improvements facilitated program adherence:

“mostly because I wanted to sort of see what effects it did actually have on me, so I thought the more I do it the better my score on some of the games . . . that means that I improved myself, my memory, so I achieved that much so that really sort of pushed me to keep doing it, doing better so that I could improve myself basically” –p16 (healthy)

However, for some, monitoring scores and progress was counter-productive, particularly when they were not improving:

“some days you did better and other days he’d do worse than the very first time he did it, then you got a bit down hearted” –carer of p11 (AD)

One participant described the feedback as a “generic pat on the back” and would be more valuable if it was more personalized. In general, participants would have preferred a more tailored program, taking into account education, occupation, and current dementia severity, with personalized feedback on performance:

“they’ve got to be explaining what you’re supposed to be doing and a purpose other than the obvious thing of identifying sea urchins, sea animals, that’s obvious what that’s about but what is that actually helping? To get some feedback on my brain, I am coping, how I’m doing?” –p25 (AD)

Participants also enjoyed the challenge, and although more difficult exercises entered an element of frustration, participants recognized that these exercises were pushing or stretching them more than simpler exercises that were easier to complete:

“well keeping your brain active and making new links and making you push yourself to do things that you might not otherwise do so you know some of the activities I probably wouldn’t choose to do but making me do those . . . ” –p19 (healthy)

Adherence to the program was generally good but for some participants this deteriorated over time:

“when I first came here and I went home I was doing it religiously, but then it slipped my mind and then I found it difficult to get it back in the routine” –p13 (AD)

Adherence was fostered through a sense of commitment and investment to completing the training:

“well since I’d started it- invested the time that I had I wouldn’t want to stop it part way through . . . but also I’m interested to see what it could tell you about my own condition” –p3 (MCI)

Participants preferred exercises to be “prescribed”, providing a better challenge, and reducing the risk of training a limited number of cognitive domains, and prevent participants selecting exercises which more enjoyable, but not necessarily “training” the brain:

“if you chose the games you’d probably only choose the easy games and I quite liked the challenge with what I found the more difficult ones because I got quite determined I wanted to be able to do it!” –p16 (healthy)

Furthermore, healthy participants and those with MCI acknowledged their ability was likely to fluctuate and were more accepting of that, which provided additional resilience:

“I knew that even though I was working as hard as I could there were days when it was not one of my good days but I just accepted that and I didn’t feel like it affected my mood” –p7 (MCI)

The competitive nature of the program was also a motivating factor, not wanting to be “beaten by the computer”. Participants felt encouraged by the positive feedback and reinforcement the program provided which instilled a sense of achievement and satisfaction:

“at the end of each day’s thing it said keep it up didn’t it? It gave him a sentence, a bit of encouragement, come back for the next session” –carer of p26 (AD)

Cues to action

The majority of participants were able to meet the target of five sessions per week, and different strategies were employed to achieve this (e.g., incorporation into daily routine, prompts or reminders). For participants with AD and MCI, carer support was often integral to completing the program. For some this was a positive experience, becoming a shared journey between participants and their carers, with carers enjoying the participant’s engagement with the program:

“well he wouldn’t have managed if I hadn’t helped him to get onto it every time but that got better . . . but I quite enjoyed watching him do them but you know, you did get frustrated if you couldn’t remember what to do” –carer for p21 (AD)

For carers there was the added challenge of taking a “step-back” and allowing the participant to undertake the program without providing too much support:

“sometimes it is quite challenging not to interfere too much, to leave him to it . . . I try to take a step back” –carer of p21 (AD)

For participants with dementia, it was important to balance variety of exercises with sufficient repetition such that participants could track their progress and facilitate familiarity with the exercises:

“The repetition of the puzzles as we became more familiar made it smoother and less restrained but at the start it was a bit frustrating” –carer of p19 (AD)

Participants had mixed views on the role of CT in dementia risk reduction, many aligned the benefits with keeping mentally active, and while it was seen “not to do any harm”, participants felt it may delay but not prevent the trajectory toward dementia:

“if you’re inclined to get dementia it will help keep it off a little bit but I think if you’re going to get dementia you’re going to get it anyway, nothing can stop it” –p11 (healthy)

Participants discussed the role of brain stimulation in dementia risk reduction and getting that message through is a potential cue or trigger to adopting behavior change. However, there was a level of skepticism, particularly among healthy participants around the effectiveness of CT, and a number of participants cited the importance of having sufficient evidence which would primarily affect their decision whether or not to undergo a preventative program:

“I don’t whether there’s scientific evidence to prove that, I work on evidence, so if I think there’s evidence to support that . . . I would certainly do it but I know there is evidence that people who have an active mind, who participate, and socialize and so on, are less likely to suffer from dementia so I know those factors I’m not sure of brain training in inverted commas directly will affect that but again I would be interested see whether the data proves that I’d certainly do it” –p6 (healthy)

Certainly, evidence was more often cited as a trigger to taking up behavioral intervention than more generic sources, such as the media. One participant entered the study with preconceptions about the lack of effectiveness of CT, which they felt were reinforced by the program, and would opt to do other activities for mental stimulation. Preconceptions were influenced by the commercial nature of the program, and concerns around the validity of prior research. For some participants with dementia there were alternative activities that provided more benefit and stimulation, for example one participant and carer discussing informal reminiscence:

“I just have to repeat everything several times but then suddenly you will remember something. We try and talk about things from the past, lovely holidays, travelling the world, and people that we’ve met, and you know I try and get you to remember things” –carer of p2 (AD)

Figure 4 conceptualizes the major themes and their relationship to the HBM, and Table 3 summarizes the interview data under the six constructs of the HBM.

Fig. 4

Sub-themes within four major themes of the health belief model.

Table 3

The six constructs of the health belief model with interview data summarized under each theme by diagnosis

Theme	Participant No.	Quote from interview
Risk susceptibility
Healthy	20	“I don’t think so well I hope not [dementia risk]. I do try and do exercise and as much sleep as possible at night and eat fairly well, I’m not overweight if there’s anything else I could do to prevent it [dementia] I’d do it”
MCI	3	“I would imagine that there’s a distinct chance that [dementia] might happen, I mean it does happen quite a lot to most people and given that I know my memory is failing in fact”
Risk severity/dementia severity
Healthy	4	“Quite high I should think and it depends on, obviously depends on level, and depends on a whole variety of other things as well. So do I want to develop dementia? No thank you, if I’m offered the choice but I don’t think I’m being offered a choice”
MCI	9	“it’s difficult, I have a good friend who is now deeply into dementia and he’s still managing to live at home independent because there’s about half a dozen people watching over him all the time. I would hope that I would still be able to, even if I couldn’t get out about, still be able to live independently in my own home and I don’t know, I’ve not really noticed any serious impairment it’s just that I did get worried twelve months ago and sought the doctor’s advice and here I am and I’m far more reassured than I was twelve months ago”
Dementia	15	“at the moment I can do everything that I always have done, my memory is certainly different, a lot different to what it was although I can still do my job or job that I did my apprenticeship in so I’m ok there so at the moment I’m not too bad but obviously that’s a downward spiral I suppose so it will change I’m aware of that and I know it will change at some point”
Benefits to action
Healthy	6	“I don’t whether there’s scientific evidence to prove that, I work on evidence . . . but I don’t know that there is evidence to support that so if it proves that is the case I would certainly do it [brain training] but I know there is evidence that people who have an active mind, who participate, and socialize and so on, are less likely to suffer from dementia so I know those factors. I’m not sure if brain training in inverted commas directly will affect that but again I would be interested see whether the data proves that I’d certainly do it”
MCI	7	“because I could see the benefit from it and I felt it was good for me and I felt that that sort of challenging, I enjoyed it and I felt it really did work and I’ve found that there was definitely a benefit to it”
Dementia	25	“the brain games exercised me and that was good, and I think that with some of the games I was doing pretty well and I improved a little bit as the time went on so that’s been good”
Barriers to action
Healthy	10	“well I think your intervening with Lumosity and to get the penguin pursuit fix because that that was an annoyance whenever it came up it would be oh for heaven’s sake do I even bother to do this because it’s going to upset everything I can’t won’t be able to get past it easily and so maybe I should just stop for tonight”
MCI	12	Carer: “but then of course the problem is that you want to interject and tell her what’s right and what’s wrong which is obviously not what the program is about at all and therefore you would try to stop to do that”
Dementia	2	Carer: “You just couldn’t pass them. Couldn’t pass the exercises could you. So it made you feel a failure that you couldn’t cope with the exercises”
		Patient: “I don’t know about that. Or maybe I just didn’t want to. If you like I’ve given up”
		Carer: “I think yes you have become disillusioned with what’s happening to you”
Self-efficacy
Healthy	15	“so I thought the more I do it the better my score on some of the games and that means that I improved myself, my memory, so I achieved that much so that really sort of pushed me into keep doing it, doing better so that I could improve myself basically”
MCI	12	“I was pleased with my abilities, it proved that I was, there was quite a lot there that I could cope with, practice makes perfect of course and a lot of them are there for challenges and to test people and some would find them hard and some probably wouldn’t find particular ones hard but I do find things like that a challenge”
Dementia	13	“sometimes I used to feel quite satisfied when I got a personal best, you know, I know they weren’t great scores and probably a five year old would have done as well but they were good to me”
Cues to action
Healthy	1	“it [brain training] might lower it [risk of dementia] but I don’t know whether there’s enough evidence yet to say that for definite so that’s just based on really what I hear in the media”
MCI	10	Carer: “I think [patient’s] improved since he’s been aware of trying to use your brain and when you get that message that’s quite a big factor I think”
Dementia	21	Carer: “but I kept having to remind him [patient], you know let’s get the puzzles tonight or, and then once we got going then it was fine, he’d just forget”

DISCUSSION

Summary of results

In summary, the study and CT program were feasible and acceptable to healthy older adults and participants with dementia or MCI, as evidenced by the high completion rate and number of perceived benefits. Key priorities for all participants were: flexibility in the timing of the program, and greater personalization of the training and the feedback on an individual basis. Key barriers to participation were: lack of device portability, poor instructions, difficulties with technology, apathy, dementia severity, and conflict between patients and carers. There was limited qualitative evidence for the presence of any transfer effects. However, participants did see benefit in keeping mentally active as part of a healthy lifestyle contributing to the prevention of dementia, and maintenance of cognitive function. Perceptions regarding risk susceptibility to dementia varied between participants but risk severity was perceived to be high. Participants felt there was a lack of sufficient evidence on whether CT could mitigate this risk, but some would consider the use of a CT program if the benefits were scientifically proven.

Results in context of the HBM

Despite the high number of barriers to action, particularly among participants with a diagnosis of dementia, completion rate of the trial was high (89%completed the program). Although benefits were present, few perceived transfer effects were identified, and benefits were more general (e.g., increased awareness, sense of control), consistent with previous studies [30]. Participants with dementia or MCI were more likely to identify benefits to their memory or abilities compared to healthy older adults, which may be due to greater “buy-in”, given they had potentially more to gain from completing the program. The high completion rate is therefore discordant with the balance of barriers and benefits identified in this analysis. Despite significant barriers to training, many participants were able to maintain motivation and adherence. A central theory to the HBM is that where the severity of the threat is perceived to be high, the individual is more likely to engage in health related behaviors perceived to reduce that risk [23]. Thus, the willingness to take part in and complete a trial of CT for healthy older adults and MCI may reflect the high perceived severity of a dementia diagnosis recognized by all participants. Similarly, participants with dementia may be willing to adopt a cognitive intervention despite its side effects due to the high chance of deterioration, and limited treatment options available. Although perceived susceptibility was felt to be low and multifactorial, the overall perceived threat (combination of perceived severity and susceptibility), was seen to be high which may moderate individual’s decision making [23]. Perceived threat is dependent on the level of knowledge on dementia risk [14]. This was a sample of well-educated healthy older adults, and in part this may have moderated the interaction with the CT program. Interestingly, participants were not overly influenced by media reports, and were largely evidence driven in their choices to adopt cognitive intervention to prevent dementia or sustain cognitive function. Family history was commonly identified as a significant risk factor by healthy participants and acted as a prompt to engage in cognitively healthy lifestyles, and both physical exercise and cognitive stimulation were seen to facilitate this. Maintaining independence is a key priority for healthy older adults [31] and preventative programs are appealing to maintain cognitive function [11, 30]. However, healthy older adults in Finland expressed similar doubts on the effectiveness of prevention strategies, with an element of futility, and strongly-held perceptions on hereditary dementia risk [32]. Thus, where risk is felt to be non-modifiable, this may hamper engagement with preventative programs.

Table 4

Barriers identified to CT in this study for participants with dementia and the recommendations for adaptation of future CT programs

Barrier	Recommendation
Participant characteristics
Low self-efficacy	•Motivational interviewing pre-intervention and identification of potential barriers
Anxiety and depression	•Intervention pre-screening
	•Combined cognitive-behavioral therapy with training
Apathy	•Intervention pre-screening
	•Motivational interviewing alongside the intervention
Conflict between patient and carers	•Option for home- or group-based, or a combination of the two
	•Greater facilitator in-person or telephone support
Dementia severity	•Intervention pre-screening
	•Lower difficulty levels to make the intervention applicable to a wider range of people living with dementia
Intervention characteristics
Lack of individualized feedback	•Provide information on individual performance, areas of weaknesses, and ways in which performance could be improved
Lack of tailored intervention	•Pre-screening of education level, literacy, and occupation to tailor the difficulty level and applicability of exercises
Lack of computer literacy	•Pre-intervention screening and testing to identify suitability of intervention
	•Pre-intervention training
	•Increase number of devices available for the program to offer choice to participants based on which technology they are most comfortable with
	•Paper and pen alternatives for those with low levels of computer literacy
	•The option to slow the increment in difficulty
Poor instructions	•Involve people living with dementia and their carers in the development of the instructions to ensure they are easy to follow and relate to the exercise clearly
	•Reminders of the instructions available throughout for reference
Abstract exercises	•Indicate the purpose of the exercise and how it might translate to everyday life
	•Increase the relevance of exercises to everyday task so they are more applicable to everyday life

Self-efficacy describes the belief and confidence an individual has in their ability to execute a given task [33]. Thus, where self-efficacy is perceived to be low in relation to an intervention, this will reduce engagement [33]. In addition to self-efficacy, perceived locus of control, as internal (i.e., within the individual’s control) rather than external (beyond their control), is also important for successful behavior change [33]. Thus, people need both the skills to effect change, and the belief and confidence to do so [33]. For the majority of participants, CT was able to improve and foster a sense of self-efficacy by providing regular positive feedback and improving participant’s self-esteem and motivation through a sense of achievement. In particular, CT was empowering for participants with MCI and dementia, improving their sense of control by allowing them to take a positive action to improve their cognitive function. However, this was not universal and self-efficacy was greater among healthy older adults compared to those with cognitive impairment. Indeed, three participants with dementia dropped out of the program, in part due to lack of confidence and self-efficacy to complete the program. These participants also had a number of internal barriers (e.g., severity of dementia, apathy), which were not easily modifiable to enhance engagement with the program. The concept of futility in dementia prevention has been previously identified as a barrier to successful engagement [9, 34] and was evident among participants in this study. One solution may be to combine CT with cognitive behavior therapy to address the impact of negative emotions or thoughts on program engagement [9].

Barriers to engaging effectively with the program were more prevalent among participants with dementia compared to healthy older adults and people living with MCI. Apathy is one of the most common neuro-psychiatric symptoms in dementia and is associated with poorer outcomes [35, 36], and was a significant barrier here, resulting in reduced motivation and engagement. Apathy is commonly associated with lack of insight, which was a significant barrier to CT for patients with cognitive impairment associated with HIV and schizophrenia [13]. Lack of insight may reduce the perceived susceptibility and vulnerability to further deterioration in cognitive function, and thus may inhibit a person’s willingness to engage with cognitive intervention. Self-awareness and insight can be enhanced by CT, and have been demonstrated previously for those with acquired brain injury [10] and healthy older adults [30]. However, increasing awareness and insight can also result in anxiety, emotional stress, and poor self-esteem, consistent with previous studies [10 , 37]. Compared to healthy older adults and those with MCI, participants with dementia were less resilient to difficulties, and self-efficacy was more likely to be compromised at a lower threshold as a result. Thus, CT presents specific challenges that are unique for patients with dementia, which will require specific adaptations and additional support.

Intervention components, feasibility, and recommendations

Majority of participants in this study preferred a flexible, home based program, due to time and work commitments. Group based CT may be more effective than home based [3], but is limited by: time and motivation, life commitments (e.g., family, work), [13 , 39], poor health and mobility, and transport [30, 40]. Here, CT resulted in conflict between patients and their carers, and carers had a tendency to over-support participants. Group-based CT was felt to potentially avoid this friction and may also provide greater social interaction. This may be particularly beneficial to those who are lonely, isolated, or cognitively impaired [30 , 39], and has been identified as a key aspect of “successful aging” [41]. A particular advantage of group-based sessions may be to offer normalization of experiences related to memory loss and aging [34, 37]. However, group-based cognitive interventions can have side-effects (i.e., anxiety), which can negatively impact on engagement with the program [10, 30]. Anxiety was a barrier for participants with dementia, and resulted in drop-out in this study and others [13]. Therefore, CT needs to be flexible and meet the needs of the individual.

Access to technology can be a barrier to implementing home-based programs [30, 42], although this was not identified here or in other studies [11, 40]. Problems with technology can be a significant source of frustration for participants [11 , 40], and participants need access to an environment conducive to training [13 , 39]. Furthermore, learning a new skill, combined with technology can be problematic for older adults, and more-so those with cognitive impairment [39]. A graded increase from paper and pen to computer exercises may reduce the number of new skills required at the outset. Increasingly, a wide array of platforms are available to engage with CT, but platform preference varied between participants, and multiple options should be available. However, programs are not easily adapted and translated between platforms, reducing accessibility.

Participants valued more individualized feedback [11], and programs should be tailored to individual’s occupation, education, and dementia severity to ensure they are achievable. Many CT programs have been developed and tested in healthy populations and may not be applicable to patients with dementia. Thus, CT programs need to be developed and evaluated specifically for different populations. Exercises should be relatable to everyday life and were found to be abstract and confusing by participants in this study and others, resulting in reduced engagement [11 , 39]. Table 4 summarizes the key recommendations for the adaptation of CT programs for people living with dementia.

Strengths, limitations, and future directions

The strengths of this study were a relatively large sample reaching data saturation for the majority of themes, and the use of the HBM to underpin the design and analysis of the study [43]. Selection bias may have selected participants who are more computer-literate and who have access to technology. Although the HBM has a number of limitations, when applied systematically, it can provide a comprehensive model for understanding behavior change [18]. Three interviews were conducted remotely by video-link which may have reduced the recording quality and identification of para-linguistic cues. Future studies should investigate the comparable acceptability of different types of cognitive interventions.

CONCLUSIONS

In conclusion, a home-based computerized CT program was feasible and acceptable to healthy older adults, and the majority of participants with dementia and MCI, and their carers. However, a number of key barriers were identified which need to be considered in order for home-based CT programs to be adapted for people living with dementia and facilitate successful implementation.

Footnotes

ACKNOWLEDGMENTS

We would like to acknowledge the input of the members of the patient and public involvement group and trial steering committee in the development and oversight of this study. We would like to acknowledge Lumosity© for providing the cognitive training software used in this study.

LB is a Dunhill clinical research training fellow (RTF1806∖27). TGR is a National Institute for Health (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily of NIHR or the Department of Health and Social Care. Lumosity© provided the cognitive training program but did not provide any financial support and were not involved in the design or implementation of the study.

Authors’ disclosures available online ().

The supplementary material is available in the electronic version of this article: .

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