3.1 Adherence and drop-outs
A full description of trial participants has been reported previously [13]. Participants were dichotomised into two groups: those that trained more than 20 hours over the study (high adherence, n = 20), and those that trained less than 20 hours over the study (low adherence, n = 5) or dropped-out (n = 3). The median hours trained for high adherence group was 37.8 [IQR: 30.5–52.2], compared to 17.1 [IQR: 16.8–18.8] in the low adherence group. The majority of high adherers were healthy (n = 10, 100% of healthy), or MCI (n = 5, 83% of MCI), with fewer from the AD group (n = 5, 42% of AD). In contrast, the low adherence group consisted mainly of AD (n = 7, 88%), with only one MCI participant. Barriers and facilitators from the qualitative analysis are arrayed against the high and low adherence groups in Table 1.
Table 1
Joint display of participants with high vs low adherence rates and drop-outs with barriers and facilitators to training arrayed against adherence.
|
Quantitative
|
Qualitative
|
Integration
|
Participant
|
Drop-out Y/N
|
No. hours trained
|
Facilitators
|
Barriers
|
Example quotes
|
Interpretations
|
Completers and high adherence (> 20 hours [23]) (n = 20)
|
|
Healthy 16
|
N
|
114.1
|
• Benefit/relaxation
• Timing
• Enjoyment and interest
• Determination
• Look forward to
• Competition
• Acceptance
• Achievement
• Variety
• Challenge
• Repetition
• Visible progress
• Routine
• Reminders
• Learning
• Carer support
• Completer-finisher
• Commitment
|
• Distractions
• Confusing instructions
• Environment
• Busy/stressed
• Tiredness
• Low mood
• Frustration
• Negative feelings linked to performance
• Holidays/illness
• Technology problems
• Lack of portability
• Forgetting sessions
• Difficulty level
• Dexterity/arthritis
• Visual impairment
|
“even though they were frustrating I enjoyed doing them because I wanted to do them better or get a better score because I knew I could do them”– healthy (15)
“it showed you where you hadn’t done so well and where you had so there was an element of motivation from that” healthy (1)
“just because I don’t like a game doesn’t mean to say you should stop doing it because I’ve got to keep getting used to it haven’t I? Respond to the challenge” MCI (10)
“each time when you get a better score than last time….. I felt as though I was achieving something” AD (13)
|
More likely to see the challenge, accepting that performance would be fluctuant and less effects on mood with this. Participants more determined, if they experienced setbacks more likely to spur them on than deter them. Motivated by achievement, progress and challenge. Some required reminders.
Fewer barriers and more were external than internal.
|
AD 6
|
N
|
70.0
|
Healthy 15
|
N
|
56.7
|
MCI 12
|
N
|
53.2
|
Healthy 10
|
N
|
52.3
|
AD 17
|
N
|
52.2
|
Healthy 19
|
N
|
46.1
|
Healthy 11
|
N
|
45.8
|
Healthy 1
|
N
|
40.7
|
Healthy 20
|
N
|
38.8
|
Healthy 4
|
N
|
36.8
|
MCI 7
|
N
|
35.8
|
MCI 5
|
N
|
33.3
|
MCI 9
|
N
|
33.2
|
MCI 10
|
N
|
30.8
|
Healthy 6
|
N
|
29.6
|
AD 13
|
N
|
29.2
|
AD 26
|
N
|
26.3
|
Healthy 7
|
N
|
25.7
|
AD 21
|
N
|
23.7
|
Median [IQR] hours trained
|
37.8 [30.5–52.2]
|
Drop-outs and low adherence (< 20 hours) (n = 8)
|
MCI 3
|
N
|
19.8
|
• Interest and enjoyment
• Investment
• Completer-finisher
• Commitment
• Feedback
• Time (completed the exercises quickly)
• Routine
• High levels of pre-morbid education
• Carer support
• Carer step-back
• Facilitator support
• Ability to do the exercises
• Computer-literate
• Visible progress
• Repetition
• Satisfying
• Quiet environment
|
• Apathy
• Confusing or lack of instructions
• Remembering instructions
• Fluctuating performance
• Negative feelings linked with poorer performance
• Dementia symptoms
• Difficulty level
• Missed sessions, difficult to get started again
• New situations daunting
• Frustration
• Fear of failure
• Patient-carer friction
• More challenging than anticipated
• Lack of insight
• Forgetting sessions
• Illness
• Time
• Computer literacy
• Lack of portability
• Game purpose
• Patronising or “childish”
• Tired/fatigue
• Anxiety and stress
• Speed of the exercises
• Reliance on carer to set up and help with the training
• Dexterity/arthritis
• Visual impairment
|
“he got irritated with me trying to get him to do them…..” Carer for AD (12)
“I mean you used to love doing cross words and Sudoku, and you know all things like that, but now you have no interest in that have you?” Carer for AD (2)
“when I get up in the morning some days I can get up and feel fine and I can get things done and other times I feel a bit woozy and not with it then everything’s difficult for me to do then” – AD (11)
it made me feel stupid, it really did” AD (5)
“I found that the- some of the puzzles it was difficult to work out how you were to proceed, whereas most of them had a little beginning session where you could learn how to do what you were going to do, some of them I couldn’t find any such learning aspects” MCI (3)
“I think if somebody had been used to playing games on the computer they would find it much easier to do because they’d be that quicker, but he hadn’t really used the computer much for the last six months so you get out of the habit of using it…and that makes it more difficult” carer for AD (12)
|
Majority (7) of participants had a diagnosis of AD (1 MCI). The three drop-outs had high numbers of barriers, with relatively fewer facilitators. Carer support was the most common facilitator. Participants who didn’t drop-out but had low adherence experienced more enjoyment, interest, and better ability to complete the exercises with visible progress. Common barriers to both drop-out and low adherence were: difficulty interpreting the instructions, severity of the dementia and the difficulty level of the exercises. Frustration and lack of familiarity with technology were also common. Drop-outs were more likely to have apathy and lack of insight than those with low adherence. Drop-outs were more reliant on carer support and experienced friction with carers. Those with low adherence rates benefited from carer support, but also carers taking a step back.
|
AD 19
|
N
|
18.8
|
AD 11
|
N
|
17.1
|
AD 25
|
N
|
16.8
|
AD 15
|
N
|
11.5
|
AD 2
|
Y
|
-
|
AD 5
|
Y
|
-
|
AD 12
|
Y
|
-
|
Median [IQR] hours trained
|
17.1 [16.8–18.8]
|
There were a greater number of barriers amongst the low adherence and drop-out group. In particular, barriers that were not present amongst the high adherence group were: apathy, severity of cognitive impairment, fluctuating symptoms, ability to remember instructions, difficulty with new situations and skills, fear of failure, patient-carer friction, carer reliance, lack of insight, lack of computer literacy, and higher levels of anxiety, stress and frustration. In contrast to participants with low adherence, barriers were more easily overcome by high adherers, which were viewed as a challenge. Barriers in the high adherence group were more likely to be modifiable; for example, minimising distractions, having a suitable environment, training when less tired and busy, in comparison with less modifiable factors, such as dementia severity, apathy, lack of insight, and carer reliance. Although high adherers also experienced frustration and negative feelings related to poor performance, they were more likely to overcome this by “taking time out” or accepting their performance was likely to fluctuate. High adherers were particularly facilitated and motivated by achievement, challenge, and visible progress. Similar facilitators were present in the low adherence group (ability to complete exercises, visible progress and satisfaction), but they were more likely to need facilitator or carer support to complete the training, including carers being able to step-back when needed in some instances.
3.2 Integrated participant profiles
Participants were divided into three quantitative groups: increase in CRR (n = 6), no change in CRR (n = 9), and reduction in CRR (n = 7) post-training. In Table 2, the quantitative outcomes are arrayed against the qualitative experiences for each participant in their respective CRR groups, to identify whether benefits in the quantitative arm translated into qualitative benefits, or where the two are discordant.
Table 2
Joint display of participants grouped by quantitative response to training (CRR change), arrayed against their individual quantitative outcomes, and qualitative experiences from training.
|
Quantitative
|
Qualitative
|
|
Participant
|
CRR change
|
Other quantitative changes
|
Positive experiences/outcomes
|
Negative experiences/outcomes
|
Interpretation
|
CRR increased
|
All participants with an increase in CRR (n = 6) were from the AD or MCI group. Majority had positive experiences (enjoyment, increased awareness or brain activity, challenge), but few noticed significant effects to memory, mood or ADLs. Few negative effects, frustration was common. Change in other quantitative outcomes was variable, but the majority (n = 4) had stable or improving cognition or improved or stable quality of life (n = 5), or mood (n = 4). These were consistent across QUAN and QUAL measures.
None improved in ADLs, consistent across QUAN and QUAL analyses.
|
AD 19
|
+ 5
|
ACE-III 0
GDS 0
DEMQOL + 4
IADL − 1
|
• “Makes you think about different things”
• Focus and enjoyment
• Visible progress in speed and ability
• No memory decline = positive
|
• Frustration
• Patient-carer strain
• Increased awareness of deficits (negative)
• No effects on ADLs
• No mood effects
|
AD 15
|
+ 3
|
ACE-III − 6
GDS + 1
DEMQOL − 1
IADL 0
|
• Felt good when achieving something
• Enjoyment
• Visible progress
|
• No effects on ADLs
• No memory effects
• No mood effects
|
AD 13
|
+ 2
|
ACE-III + 10
GDS 0
DEMQOL + 6
IADL + 2
|
• “Made you think”, use logical thought
• Felt challenged
• Improved awareness
• Possible memory effects
• Satisfied, pleased with scores
|
• No effects on ADLs
• Mild frustration
|
AD 6
|
+ 1
|
ACE-III + 7
GDS + 2
DEMQOL + 1
IADL 0
|
• Active mind benefit
• “Cheerful” when performing well, but could feel “down” when not
|
• No effects on ADLs
• Occasional frustration (performance related)
• No memory effects
|
AD 11
|
+ 1
|
ACE-III 0
GDS − 4
DEMQOL + 1
IADL − 1
|
• Pleased and happy with better ability
• Good days more than bad days
• Felt challenged, “pushed”, had to “think a lot”
|
• Frustrated and depressed with difficult exercises
• No effects on ADLs
• No memory effects
|
MCI 9
|
+ 1
|
ACE-III − 1
GDS − 2
DEMQOL + 3
IADL 0
|
• Challenge
• Stable memory = positive
• Discipline
• “Exercise mind in a different direction”
• Increased awareness of brain activity
• Marginal memory improvement “a little sharper”
|
• No ADL effects
• Frustration with visuospatial exercises
|
CRR neutral
|
Majority were healthy or MCI with no change in CRR (n = 8), only 1 from the AD group. Three participants felt their memory had been improved by the training, which was consistent with the QUAN (ACE-III score) data. Only one person improved on the IADL which was not identified qualitatively. One participant qualitatively identified ADL improvement but this was not consistent with QUAN measures. Majority (n = 7) had improved or stable QoL which was supported by positive QUAL experiences. Majority (n = 7) had stable or improved mood on
QUAN analysis, but only four reported improved mood qualitatively.
|
Healthy 1
|
0
|
ACE-III − 1
GDS + 1
DEMQOL + 4
IADL 0
|
• Interest
• Competition
• Enjoyment
• Benefit
|
• No effects on ADLs
• No memory effects
• No mood effects
• Mild frustration
|
Healthy 4
|
0
|
ACE-III + 1
GDS + 1
DEMQOL 0
IADL 0
|
• Nil positive
|
• No effects on ADLS
• No memory effects
• Frustration
• Anxiety – abated with time
|
Healthy 6
|
0
|
ACE-III + 1
GDS 0
DEMQOL − 2
IADL 0
|
• Active mind
• “Taught a certain routine that could improve certain things”
• Learning & enjoyment
|
• No effects on ADLs
• Unsure if memory improved
• No mood effects
• Mild frustration
|
Healthy 16
|
0
|
ACE-III + 4
GDS 0
DEMQOL + 3
IADL 0
|
• Felt memory improved in and out of the programme but unsure by how much
• Happy and pleased with scores and progress
• Achievement
|
• No effects on ADLs
• Occasional frustration
|
Healthy 20
|
0
|
ACE-III − 1
GDS 0
DEMQOL + 2
IADL 0
|
• Positive mood related to improved scores
• Achievement
• “Made you think”
|
• No effects on ADLs
• No memory effects
|
MCI 3
|
0
|
ACE-III + 4
GDS 0
DEMQOL + 2
IADL − 1
|
• Interest & enjoyment
|
• No effects on ADLs
• No memory effects
• No mood effects
|
MCI 5
|
0
|
ACE-III − 3
GDS − 2
DEMQOL + 8
IADL 0
|
• Challenge
• Mood improved
|
• No effects on ADLs
• No memory effects
• Frustration
|
MCI 7
|
0
|
ACE-III + 5
GDS − 2
DEMQOL + 11
IADL 0
|
• Challenge & achievement
• Enjoyment
• Concentration
• Improved mood
• Active mind
• Improved organisation
• Improved memory
• Improved multi-tasking
|
• Frustration with some exercises
|
AD 17
|
0
|
ACE-III + 2
GDS 0
DEMQOL − 6
IADL + 2
|
• Had to “think very hard”
• Improved abilities
• Challenging
• Improved awareness
• Improved memory
|
• Frustration
• No effects on ADLs
|
CRR reduced
|
All participants that had reduced CRR were healthy or MCI. Majority reported benefits (active mind, enjoyment, progress, improved awareness). No participant identified improvement to ADL, consistent with QUAN data. Four participant identified effects to mood (3 positive, 1 negative), consistent with QUAN data in 2 participants. 2 participants identified improved memory which was consistent with QUAN data in one case.
|
Healthy 11
|
-9
|
ACE-III − 1
GDS 0
DEMQOL 0
IADL 0
|
• Active mind
• “Use your brain differently”
|
• No effects on ADLS
• No memory effects
• No mood effects
• Frustration
|
Healthy 10
|
-8
|
ACE-III − 1
GDS − 1
DEMQOL 6
IADL 0
|
• Increased awareness
• Visible progress
• Enjoyment
|
• No effects on ADLS
• No memory effects
• No mood effects
• Frustration
|
Healthy 19
|
-5
|
ACE-III + 1
GDS − 1
DEMQOL − 2
IADL 0
|
• Enjoyment
• “Making you push yourself”
• Challenging
• Visible progress
• Pleased with good scores
|
• No effects on ADLs
• No effects on memory
• No effects on mood
• Disappointed with scores
• Some tension
|
Healthy 7
|
-1
|
ACE-III − 1
GDS 0
DEMQOL 0
IADL 0
|
• Competitive
• Enjoyment
|
• No effects on ADLs
• No effects on memory
• Frustration and anxiety
|
Healthy 15
|
-1
|
ACE-III 0
GDS − 1
DEMQOL 4
IADL 0
|
• Active mind
• Challenge
• Visible progress
• Enjoyment
• Positive mood related to scores
|
• No effects on ADLs
• No memory effects
|
MCI 10
|
-1
|
ACE-III + 1
GDS + 1
DEMQOL − 1
IADL − 1
|
• Stimulating
• Enjoyment
• Improved memory
• Improved mood
|
• No effects on ADLs
• Frustration
|
MCI 12
|
-1
|
ACE-III − 5
GDS − 1
DEMQOL − 7
IADL 0
|
• Pleased with abilities
• Challenge
• Enjoyment
• Improved awareness
• Improved memory
• Improved mood
|
• No effects on ADLs
• Frustration
|
No CRR data
|
No effects on ADLs identified qualitatively, although one participant did improve on IADL. Two participants felt memory improved, one felt it had deteriorated, and only one corroborated with the QUAN data. No effects on mood qualitatively, but worsened in all participants quantitatively. All three reported benefits to the programme.
|
AD 21
|
-
|
ACE-III + 6
GDS + 1
DEMQOL + 10
IADL + 2
|
• “Gets your brain working”
• Challenging
• Enjoyment
• Satisfaction
|
• No effects on ADLs
• No effects on memory (possibly worse)
• No effects on mood
• Frustration
|
AD 25
|
-
|
ACE-III + 1
GDS + 2
DEMQOL − 9
IADL − 1
|
• Felt “exercised”
• Enjoyment related to performance
• Memory improved
• Visible progress
• Satisfying
|
• No effects on ADLs
• No mood effects
• Significant frustration
|
AD 26
|
-
|
ACE-III − 1
GDS + 1
DEMQOL + 16
IADL 0
|
• Generally pleased
• “Made me think more”
• Memory improved
• Challenging
• Enjoyment
|
• Felt “could have done better”
• No effects on ADLs
• No mood effects
• Frustration
|
The majority of participants whose CRR increased were in the AD group (n = 5, 83%), with one MCI participant. No healthy participants had an increase in CRR post-training. Changes in the other quantitative outcomes for this group were variable (cognition, QoL, mood, function), but most had stable or improving cognition (n = 4), stable QoL (n = 5), or mood (n = 4). The majority did not improve in function, and this was consistent across quantitative and qualitative measures. On average, cognition improved by 1.7 (5.8) points on the ACE-III, consistent with few participants identifying improvements in memory, and those that did, felt they were either stable or marginally improved. On average, mood improved by 0.5 (2.2) points on the GDS; however, the qualitative data were more variable and complex. Participants could be frustrated by the programme, and negative feelings were linked to poorer performance, but participants also reported positive experiences linked to greater awareness, progress and achievement. Majority of participants in this group benefited from the programme both in quantitative and qualitative measures, despite three participants (AD 11, 15, and 19) being in the low adherence group.
In the neutral CRR group, the majority were healthy or MCI (n = 8), with only one participant from the AD group. Mean quantitative benefits were small on average in this group [cognition 1.3 (2.7), GDS 0.2 (1.1), QoL 2.4 (5.1), IADL 0.1 (0.8)] which was reflected in few participants identifying qualitative benefits. Three participants benefited from improved cognition, which was also identified in the qualitative data. Only one participant improved in function on IADL, but this was not identified in the qualitative data. All participants, except one, identified more positive benefits to training (interest, enjoyment, learning, brain activity, challenge and achievement), than negative (mild frustration and anxiety), suggesting an overall benefit to training.
In the CRR reduction group, all participants were either healthy (n = 5), or MCI (n = 2), with none from the AD group. The majority reported benefits (active mind, enjoyment, progress, improved awareness), which were greater than the negative aspects (frustration, disappointment with scores). No participant identified improvement to ADL, consistent with quantitative data. Four participants identified effects to mood (3 positive, 1 negative), consistent with quantitative data in two participants. Two participants identified improved memory which was consistent with quantitative data in one case.
Three participants were not classified by CRR due to inability to complete the haemodynamic assessment at follow-up. These participants all had a diagnosis of AD, and reported benefits to the programme, including memory improvement in two cases. Quantitatively, mood deteriorated in all three, despite largely positive qualitative experiences.
Overall, participants demonstrated benefits from training, either both from quantitative and qualitative analysis, or in one of the domains. Only one participant had limited benefits from both (Healthy #4), and there was no clear integrated profile that did not demonstrate benefits to training.
3.3 Demographics, experiences, and recommendations of those that dropped-out, had low adherence or fewer benefits
Table 3 summarises the qualitative experiences and recommendations from participants with low adherence, fewer training benefits, or drop-out from the study. The mean age of this group was 71.2 ± 7.9 years and the majority (78%) were male. Seven (78%) participants had a diagnosis of AD (low adherence or drop-out), and only one with MCI (low adherence) and one healthy participant (few benefits on quantitative and qualitative analysis). Mean years of education were 16.1 ± 3.8 years, and median alcohol intake was 6 [IQR: 0–14] units per week. The majority (67%) were established on anti-dementia drugs, and deficits were mild at baseline (mean ACE-III score: 80.5 ± 16.8). There was some evidence of reduced mood, QoL of life, and function at baseline (Table 3).
Table 3
Joint display of participants with fewer benefits on quantitative analysis, lower adherence, or higher drop-out rates, arrayed against qualitative experiences and recommendations.
|
Qualitative experiences
|
Qualitative Recommendations
|
Example quotes
|
Interpretation
|
Participant
|
Healthy (4)
|
• Perceptions of effectiveness influenced by pre-conceptions, commercial programme
• Unlikely to have benefit above crosswords, jigsaws
• No clear benefits identified qualitatively
• Some anxiety and frustration
|
• Felt there are other activities more preferable i.e. walking, crosswords
• Wouldn’t choose to do CT specifically for dementia prevention
|
“I wouldn’t have done the brain training program without the research that was behind it. I started off with the preconception that a brain training program was not terribly valid let’s say. I finished it without any change of heart”
“if you enjoy doing them, fine, are they any better than doing crosswords, are they any better than doing jigsaw, are they any better, I doubt it”
|
Participants with low adherence, few benefits, or drop-out tended to be older, male, with a diagnosis of AD. Mean education years was high, but the majority were on anti-dementia drugs, and had limitations to ADLs, and some evidence of low mood at baseline. Cognitive impairment was relatively mild.
One healthy participant had good adherence (36.8 hours), but had few quantitative and qualitative benefits, largely due to significant preconceptions around CT effectiveness.
Participants with low adherence or drop-out reported friction with carers, high levels of anxiety, stress, and frustrations, and more difficulty with following the instructions or understanding the purpose of the exercise. However, some still benefited from training with enjoyment, progress, achievement, and stability of cognition over the study.
Participants recommended commencing the programme earlier in the diagnosis, better tailoring to abilities and education, clearer instructions with more reminders, a more graduated programme from pencil and paper to computer, and more personalisation of feedback.
|
MCI (3)
|
• Limited benefits identified qualitatively apart from interest and enjoyment
|
• Felt programme too short to identify benefits
• Would prefer more/clearer instructions for the exercises
• Would prefer more choice in the exercises and to skip those they didn’t enjoy
|
“It’s been too short I suppose, nine or ten weeks could I blame that programme on things that have happened in the last- I’m not sure that anything major has happened in those nine weeks so I can’t blame the programme on anything”
“well I found that the- some of the puzzles were, it was difficult to work out how you were to proceed, whereas most of them had a little beginning session where you could learn how to do what you were going to do, some of them I couldn’t find any such learning aspects”
|
AD (19)
|
• Participant and carer identified benefits in keeping mentally active, improving focus, stability of memory
• Did cause friction between patient and carer and lacked insight
• Increased awareness but this wasn’t necessarily positive
• Enjoyed doing the training
|
• No suggestions for improvement
|
“it makes you think about different things but I don’t- I can’t explain what it is its just I’m interested in doing what was in that” - patient
“yeah despite that nagging it was good particularly if its, once it picked up again after we had that break but you [patient] were doing them more quickly and sometimes surprisingly quickly got through them and there’s nothing wrong with having that little focus in the day as well” - carer
“I think that for me it turned out to be more challenging than I’d expected, the difficulty day-to-day was the reminder to do it sometimes felt like nagging
that was kind of a daily reminder of where you are when in fact sometimes you can forget where you are, it just sort of put it in your face and the other thing I found out quite quickly was it was better that I left [patient] to do all the puzzles on her own was much better than me at the start hovering over, she got on better with them when I stepped back and she did it on her own”- carer
|
AD (11)
|
• Struggled with some exercises and this negatively affected mood
• Pleased with ability on other exercises
• Enjoyed the challenge, saw benefit to mental activity
|
• Would like reminders of the instructions throughout the exercises
• Instructions could be clearer
• Speed could be slower with a more gradual increment in difficulty
• Would have liked text-message reminders
|
“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
“oh great, I thought I can do these look and then they come back and tell you I’ve done this better, I was a lot better with that one” - patient
“I think it would help on some of them because some of them got a bit too quick and it’s like when you’re doing that memory one with the beach, the more you’ve answered, the faster, and the more things come down and the faster it seemed to be going”- patient
|
AD (25)
|
• Saw benefit to keeping mentally active
• Saw visible progress in the exercises and in memory
• Enjoyed some exercises but very frustrated by others, particularly with poor/limited instructions
|
• Felt instructions could have been clearer
• Would prefer more information on the purpose of the game and the transfer to daily life
• More personalised feedback on performance
• Missed sessions due to lack of portability
|
“well, 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”
“I just got frustrated with those mind games that I thought the explanation that was given at the beginning of the, of some of them, were just poorly written, very poorly written and so as a consequence it took me ages”
“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?”
|
AD (15)
|
• Felt as though was achieving something, could see visible progress through the scores
• Enjoyed the training
• Main barrier was time and fitting the programme in
|
• More personalised feedback on performance or explanation of the scoring
|
“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? I felt it was achieving something”
“because I’ve got a lot going on I’ve found it difficult to get the time to do it”
“sometimes I got a five which I’m assuming was one of five got the top marks I don’t know but probably to give an indication of what the marks were or where you stood with those marks”
|
AD (2)
|
• Negatively increased awareness of dementia
• Training caused anxiety, stress, frustration, and friction with carer
• Engagement limited by apathy, severity of dementia, and lack of insight
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• Speed of the exercises was too fast
• Would prefer activities not using a computer
• Greater benefits from informal reminiscence with carer
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“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.”- carer
“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
“Well it isn’t fine really, I mean, I recognise that in me. But I feel that there is nothing there that I want to pursue.”-patient
“Well I had to use the computer to register your answers, but they were over so quickly, you became very stressed by how quickly it moved on to the next exercise” - carer
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AD (5)
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• Training caused significant anxiety, stress, fear of failure, frustration, and friction with carer
• Engagement hampered by low pre-morbid education, difficulty of exercises, and computer literacy
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• Better tailoring of training to education, occupation, and functional levels
• Slower increment in difficulty level
• Clearer instructions
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“I was getting frustrated really wasn’t I, that was the problem. I shouldn’t get annoyed with you but it was happening which isn’t good”- carer
“I suppose it’s very hard to tailor something that isn’t yours to particular people, whether a bit more pre-interview or something to go a bit more depth into people’s background”- carer
“I’m not saying it should be words of one syllable but they weren’t easily understandable for each game, what the premise was of that particular activity was going to do”- carer
“because I never use one…I’ve never typed or text or emails I don’t do anything because by the time I find the letter I’ve had enough”- patient
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AD (12)
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• Training caused significant friction with carer
• Engagement was limited by apathy, dementia severity, lack of insight
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• Suggested CT earlier in the disease may have greater benefit
• Slower increment in speed and difficulty
• More personalisation of the exercises to current brain function
• Facilitated sessions and paper and pen exercises may be more appropriate
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“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 gets, he tends to get, annoyed with me if I’m trying to get him to do something”- carer
“getting somebody who its difficult at this stage to do more than one time a week say, it’s difficult, the other thing was that perhaps if he had done this a year ago he might have been more ofay with doing it.”- carer
“I would find it easier with paper and pen than I would be with a computer”- carer
“you found it difficult I think you knew the answers to the questions but what you did find difficult to do was to operate the computer quickly”- carer
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One healthy participant had few benefits to training, from both quantitative and qualitative analysis. Their perception and experiences of training were strongly influenced by their preconceptions on the effectiveness of CT, and in particular, the commercial nature of CT programmes. Participants with low adherence or drop-out reported friction with carers, high levels of anxiety, stress, and frustration, and more difficulty with following the instructions or understanding the purpose of the exercise. However, many of the participants identified benefits to training: enjoyment, progress, achievement and stability of cognition over the study.
Participants recommended commencing the programme earlier in the diagnosis, with better screening and tailoring to cognitive abilities and education. Participants needed clearer instructions with more reminders throughout the exercises, and some would benefit from a more graded programme from pencil and paper to computer, and more facilitator support. Participants also valued greater personalisation of feedback with more explanation on the purpose or objectives of the exercises.