Field-testing phase of the development of individual cognitive stimulation therapy (iCST) for dementia

Evaluation of the training and support package

The knowledge and confidence ratings of carers who participated in a debrief visit remained stable or improved in the majority of cases. For those who reported improvement, application of the intervention ‘in practice’ may have served to enhance the understanding of ‘theoretical’ information about the programme provided in the training session [16]. Carers felt the support they had received was of high quality, but rarely requested help beyond the training and researcher initiated calls, which may be indicative that the intervention is easy to deliver, and the training and support package was fit for purpose.

Appraisal of activities and themes

The majority of the programme themes were highly rated. The least successful themes were ‘orientation’ , ‘food’ , and ‘being creative’ , which received mixed or negative feedback. As a result these themes were subject to review and modification for the second draft of the materials. The relationship between engagement in an activity and assessment of its difficulty was not straightforward. Some participants found it difficult to engage in activities they perceived as ‘easy’. Problems associated with inadequately pitched activities are reported in other studies of activity-based interventions [17, 18]. Adverse effects of activities deemed ‘too easy’, can include boredom, or adoption of repetitive self-stimulating behaviours. At the other end of the scale, if activities are too challenging, the person may be left feeling frustrated, confused or agitated. However, Gigliotti & Jarrott comment that pitching activities at an ‘average’ level may not be the solution, as they may not provide enough stimulation [19]. This makes sense alongside the findings that ‘moderate’ or ‘high’ difficulty ratings did not necessarily predict negative ratings in other dimensions measured (eg: interest, communication, enjoyment). In order to feel stimulated by activities, some individuals may require them to be progressively more challenging, whereas other people take more pleasure in being able to complete tasks with ease. An alternative explanation for the findings may be that people begin to find activities easier if their cognition improves along with participation. Furthermore, the implications of a ‘ceiling effect’ on the potential cognitive benefits of participating in cognitively stimulating activities may need to be considered. If a person is functioning at a high level, the intervention may be of limited use until they reach a certain threshold of impairment in cognitive performance. It is likely that the most effective activities are appropriate for the person’s level of functioning, and this may be subject to change over time. Teri and Logsdon highlight the need for activities to be appropriate for the person’s level of functioning, and acknowledge that although identification of pleasant and appropriately pitched activities can be challenging for carers, and may be related to their creativity, there are benefits to doing so for both the care giver and recipient [17]. For the carer, the benefits of providing appropriate and enjoyable activities for the person include; improved sense of self-efficacy [19], reduction in feelings of burden [19], enhanced relationship with the person [20, 21], and improved wellbeing [22]. For people with dementia, participating in pleasant activities can alleviate depression [23] as well as enhancing the relationship with the carer [21].

In the first draft of the iCST programme materials, two levels of difficulty (level A and level B) were provided for most of the activities, but not all. Since some dyads sometimes struggled to find a balance in the difficulty of the activities, and evidence in the literature emphasises the importance of appropriately tailored activities, activities with one level of difficulty were reviewed, and where appropriate split into two defined levels in the second draft so that carers to increase the choices available. In the main RCT, researchers were available to support carers in tailoring the programme and choosing activities [24].

Outcomes observed by carers

Although the measures were driven towards obtaining data about dyads’ perceptions of the materials and activities, and experience of the programme, many of the carers commented on the impact taking part in the research had on both themselves, and the person. Carers felt that that participating in the activities was beneficial for the person, and noted improvements in their mood, alertness, and communication during and following the sessions. These outcomes are consistently associated with group CST [2], perhaps indicating that the properties of CST that impact cognition, communication skills, and quality of life are retained in this individualised format. No formal measures of outcomes (eg: cognition, quality of life) were conducted so the positive impacts of participating in the field-testing described by carers can only be treated as anecdotal at this stage. However, the effectiveness of the intervention was not the main focus of the field-testing phase, and has been investigated fully in the main RCT [9, 24].

Impact on communication

The programme was seen as a catalyst for communication and a source of mutual enjoyment, which encouraged carers to spend time with the person. Communication between the carer and person can become increasingly challenging through the course of dementia. Gillies asserts that this is not simply due to any difficulties with expression and understanding of language the person may develop, but can occur when the nature or boundaries of the relationship between the carer and person change [25]. Both the quantity and quality of conversation can be marred by maladaptive patterns of communication including; the person withdrawing and initiating conversation less, cycles of repetitive questions from the person met with repetitive reminders or frustration from the carer, and getting information wrong or being unable to recall things leading to the carer correcting or ‘testing’ the person. iCST’s focus on opinions rather than facts, emphasis on errorless learning principles, and introduction of new ideas and topics to engage with may serve to alleviate the cycle of these dysfunctional communications, which may account for improvements in communication reported by carers in this study.

Enhancing the quality of dyadic communication can have a profound impact on the person, beyond the pleasure of engaging with, and relating to their carer. According to Kitwood social interactions affect the maintenance of identity [26]. Kitwood’s definition of identity stipulates ‘knowing who one is’ and ‘maintaining a sense of continuity with the past, and some kind of consistency across the course of present life’. Although a person’s sense of identity persists in dementia, cognitive impairment and social-psychological factors (eg: experience of social exclusion, depression) can make maintenance increasingly difficult. As a result, the input of others becomes very important, particularly the way in which they reinforce the person’s ‘life story narrative’ in their behaviour and responses towards them. The person’s carer, as the principal or exclusive source of interaction, will inevitably play a vital role in affirming their ‘narrative’, so poor quality interactions have the potential to exert a deleterious effect on the preservation of self identity. The positive impact of iCST on quality of dyadic communication reported by carers suggests that the programme may have compelling potential wider-reaching benefits for the person related to maintaining identity.

Benefits of mutual engagement in an activity

The loss of mutual hobbies, leisure activities and social events which sometimes occurs after the onset of dementia can be difficult for carers to come to terms with, and can be a source of stress [27]. The determinants of carer experience of gratification or frustration and burden are complex but, by providing carers and people with a mutual interest, iCST may be used as a simple aid to reduce this stress.

Benefits of observing person’s skills

Several carers expressed surprise at how ‘well’ the person performed in the activities. Family carers tend to underestimate the person’s ability to perform activities of daily living (ADL) [28], and their perception of the person’s level of impairment often differs to those of independent observers, or professional carers [29]. The closeness of the relationship [29] and carers’ subjective burden [30] are thought to have an influence on these estimations. Observing the person’s success in iCST sessions appeared to develop carers’ understanding of the person’s abilities and interests, and how to cope with the experience of their cognitive impairments.

Impact of findings on drafting of iCST programme

Feedback from this study, along with data obtained from the interviews and focus groups carried out as part of the development process contributed to the second draft of the intervention materials [31]. Alterations to the first draft of the materials were largely editorial including; correction of spelling and grammar mistakes, improvements to enhance the clarity of instructions, adjustments to the size of some text and images, and changes to the ‘monitoring progress’ forms. No changes were made to the programme in response to feasibility issues identified (eg: finding time for sessions, difficulties with iCST technique) at draft two stage. However, these issues were reviewed as part of the consensus process, resulting in amendments to the guidance provided in the final draft of the manual [31].

Limitations

A significant limitation of the field-testing study was the small sample size (n = 22) and the gaps in both qualitative and quantitative data collected from researchers and dyads. The rate of dyads who did not complete a final visit with a researcher was particularly high (59 %, 13). With only a small number of complete set up and final visit data sets it was difficult to analyze and meaningfully interpret the quantitative ratings provided by carers and researchers. This was also a problem with the data from the monitoring progress forms concerning evaluation of each session theme. Qualitative data was obtained from a bigger proportion of the sample (n = 19) (eg: feedback from the telephone support calls, monitoring progress forms, final visit questionnaires) and was used to derive meaning from the ratings.

The iCST themes were rated a varying number of times by a varying number of dyads, therefore less in depth data was obtained for certain themes. The research team aimed to distribute the six manuals as equally as possible, given the numbers recruited, but the type of data gathered was impacted by dropouts and those who did not participate in a final visit. Lack of breadth of data was problematic when identifying activities that needed reworking for draft two of the materials. In some cases, for example, when only two dyads had rated a theme and their feedback was opposing, it was difficult to justify any modifications to the activities.

The sample was not ethically diverse, thus the findings reported may not be representative of the experience or needs of carers and people with dementia of other cultures. As a result, the content of the resources provided for the activities may not fully reflect the interests of a diverse population of participants. However, this may be the case within as well as between cultures. Indeed, as described above, many of the session themes received both positive and negative ratings and some comments were very specific (eg: ‘decided to leave session as mother has never done anything creative’) which suggests that personal preference and interests may ultimately be the most influential factor in the level of enjoyment and engagement in each session theme, as well as how challenging the activities are. A larger and more diverse sample would have been more likely to reveal any stronger trends in appraisals of the themes. However even with a larger sample, the notion of creating an individualised programme of activities ‘suitable for all’ is somewhat paradoxical, so to address this, it is important the intervention is as flexible as possible with the potential to adapt activities to best suit the dyad. Encouragingly, the most successful psychosocial interventions for carers have similar qualities to iCST in that they are tailored to the needs of individuals and involve both the caregiver and recipient.