Sinéad Hynes

Exploring the need for a new UK occupational therapy intervention for people with dementia and family carers: Community Occupational Therapy in Dementia (COTiD). A focus group study

Objectives: In the Netherlands, Graff et al. found Community Occupational Therapy in Dementia (COTiD) demonstrated benefits to people with dementia and family carers. In this study, focus groups took place with people with dementia and family carers to explore how to make COTiD relevant to the UK context. Method: Six focus groups (three with people living with dementia (n = 18) and three with family carers (n = 21)) took place. Participants were asked for their impressions of the intervention, the extent to which it could meet their needs, and what modifications were needed. Audio-recordings of the groups were transcribed and analysed. Results: Three key themes emerged covering ‘loss and living with dementia’, ‘what helped us’, and ‘consistency and continuity’. People with dementia and family carers spoke about the impact of their diagnosis on them and their family and what strategies helped. Issues such as timing, follow-up, and the importance of an early intervention in preventing crises were highlighted. There was some concern over the length of the intervention and the disruption it might cause to current schedules. Conclusion: Overall, participants were optimistic about COTiD being used in the United Kingdom if it was to be introduced in a flexible and timely manner, incorporating the needs and existing strategies of the person with dementia. These outcomes have led to changes, such as incorporating more flexibility into COTiD, being made to the intervention prior to its implementation in the United Kingdom.

Community occupational therapy for people with dementia and their family carers: A national survey of United Kingdom occupational therapy practice:

Introduction A national survey was conducted with United Kingdom (UK) occupational therapists to scope occupational therapy service provision for people with dementia and their family carers in the community. Method This was an online questionnaire with topics on occupational therapists’ roles, service provision, referral, assistive technology and assessment tools. Recruitment was through direct invitation, and promotion via occupational therapy networks, websites and newsletters. Results A total of 197 responded. Occupational therapy referrals most commonly came from the multidisciplinary team. Over half primarily undertook profession-specific work, with occupational therapy assessments the most common profession-specific task. Two-thirds of referrals for initial assessments were for people with mild-to-moderate dementia. A median of 2.5 hours for assessment/intervention was spent for each person with dementia. Almost two-thirds used the Model of Human Occupation Screening Tool. Most could prescribe personal activities of daily living equipment and Telecare, with few able to prescribe equipment for reminiscence or leisure. Conclusion This national survey increases knowledge of UK community occupational therapy practice and service provision for people with dementia and their family carers. It informs occupational therapists about national trends within this practice area, and development of the community occupational therapy intervention (COTiD-UK) as part of the Valuing Active Life in Dementia research programme.

Community occupational therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID] programme): study protocol for a randomised controlled trial

BackgroundA community-based occupational therapy intervention for people with mild to moderate dementia and their family carers (Community Occupational Therapy in Dementia (COTiD)) was found clinically and cost effective in the Netherlands but not in Germany. This highlights the need to adapt and implement complex interventions to specific national contexts. The current trial aims to evaluate the United Kingdom-adapted occupational therapy intervention for people with mild to moderate dementia and their family carers living in the community (COTiD-UK) compared with treatment as usual.Methods/DesignThis study is a multi-centre, parallel-group, pragmatic randomised trial with internal pilot. We aim to allocate 480 pairs, with each pair comprising a person with mild to moderate dementia and a family carer, who provides at least 4 hours of practical support per week, at random between COTiD-UK and treatment as usual. We shall assess participants at baseline, 12 and 26 weeks, and by telephone at 52 and 78 weeks (first 40 % of recruits only) after randomisation. The primary outcome measure is the Bristol Activities of Daily Living Scale (BADLS) at 26 weeks. Secondary outcome measures will include quality of life, mood, and resource use. To assess intervention delivery, and client experience, we shall collect qualitative data via audio recordings of COTiD-UK sessions and conduct semi-structured interviews with pairs and occupational therapists.DiscussionCOTiD-UK is an evidence-based person-centred intervention that reflects the current priority to enable people with dementia to remain in their own homes by improving their capabilities whilst reducing carer burden. If COTiD-UK is clinically and cost effective, this has major implications for the future delivery of dementia services across the UK.Trial registrationCurrent Controlled Trials ISRCTN10748953Date of registration: 18 September 2014.

Intensive working memory training: A single case experimental design in a patient following hypoxic brain damage

Abstract Background: Recent reports suggest that intensive, progressive training on working memory tasks can lead to generalized cognitive gains. Case study: A patient, following hypoxic brain damage, showed significant difficulties in working memory and time-perception. This study examined the impact and specificity of any benefits resulting from automated working memory training (AWMT) in comparison with the effects of an equivalent programme that emphasized automated novel problem-solving (APST) which served as an active control. Following initial assessment, the patient trained for 4 weeks (20 days), 20–30 minutes a day on the APST tasks before repeating key outcome measures. He then trained for an identical period on AWMT. Results: There were no cognitive gains apparent following APST. Furthermore, there were no disproportionate gains on digit span following AWMT. AWMT was, however, associated with improvement in time-perception that had previously been resistant to rehabilitation. In line with previous reports, AWMT was also followed by gains on a measure of planning. Conclusion: The results provide encouraging evidence that AWMT may have generalized benefits in the context of impaired WM capacity following brain injury.

Enablers and challenges to occupational therapists’ research engagement: A qualitative study:

Introduction To develop occupational therapy’s evidence base and improve its clinical outcomes, occupational therapists must increase their research involvement. Barriers to research consumption and leadership are well documented, but those relating to delivering research interventions, less so. Yet, interventions need to be researched within practice to demonstrate their clinical effectiveness. This study aims to improve understanding of challenges and enablers experienced by occupational therapists who deliver interventions within research programmes. Method Twenty-eight occupational therapists who participated in the Valuing Active Life in Dementia (VALID) research programme reported their experiences in five focus groups. Data were analysed thematically to identify key and subthemes. Results Occupational therapists reported that overwhelming paperwork, use of videos, recruitment and introducing a new intervention challenged their research involvement, whereas support, protected time and a positive attitude enabled it. The impact of these challenges and enablers varied between therapists and organisations. Conclusion Challenges and enablers to research involvement can be identified but must be addressed within individual and organisational contexts. Multifaceted collective action to minimise challenges and maximise enablers can facilitate clinicians’ involvement in research. Using this approach should enable occupational therapists to increase their research involvement, thus demonstrating the clinical effectiveness of their interventions.

Developing a Computerised Multiple Elements Test for Organisational Difficulties

Abstract Executive function is best measured in loosely structured, multi-component tasks that reflect real-life demands. These tasks require participants to develop a strategy, keep a plan in mind and monitor time. Errors include ignoring stated goals (‘goal neglect’), over-allocation of time to one task and violating rules. Teasing apart such errors can be complicated and these assessments can be difficult to control and time-consuming to administer. This paper reports an evaluation of a new, easy-to-administer computer-based multiple component test, the Computerised Multiple Elements Test (CMET). In Study 1 20 older adults (55–70 years) completed the task under different conditions. Study 2 examines the relationships between CMET and performance on measures of related constructs. The results show that poor CMET performance correlated with self-reported frequency of everyday cognitive lapses. There is a reasonable basis for further exploration of the CMET as a quick, practical and potentially sensitive measure of organisational skills.

Validating an Irish-Language Version of the Rivermead Behavioural Memory Test — Second Edition:

Introduction: This study translates and assesses the psychometric properties of an Irish-language version of the Rivermead Behavioural Memory Test — Second Edition (Wilson et al 2003), a screening measure for memory impairment in adults. Method: All four versions of the Rivermead Behavioural Memory Test — Second Edition were translated to Irish and administered to a sample of 21 participants aged 21–64 years. Equivalent translation of the Rivermead Behavioural Memory Test — Second Edition was achieved through multiple translations and back-translations of the instrument and field-testing with both bilingual and monolingual participants. Findings: Strong evidence of concurrent validity was clear from the results. Test—retest reliability of the measure proved to be low in comparison with the English version. In general, the four parallel versions seem to be of equal difficulty, and the Irish version of the Rivermead Behavioural Memory Test — Second Edition was no more difficult than the English version. Conclusion: The results support an Irish Rivermead Behavioural Memory Test — Second Edition as a valid test of everyday memory. Overall, the reliability of the tool is acceptable, but results must be considered cautiously due to the preliminary nature of the study and given the small sample size.

A Cognitive Occupation-Based Programme for People with Multiple Sclerosis: A Study to Test Feasibility and Clinical Outcomes

Cognitive impairments are common in MS and affect personal, social, and occupational functioning. There is a developing body of evidence highlighting the role of cognitive rehabilitation, but there is still no evidence for a validated holistic approach. The aim of this study was to assess the effectiveness of Cognitive Occupation-Based Programme for People with Multiple Sclerosis (COB-MS) for improving daily life and cognitive impairment. This study used an experimental pretest/posttest design with eight-week follow-up. Participants were recruited from MS networks using convenience sampling. The primary outcome measure was the GAS. Secondary outcomes included the OSA-DLS, CVLT-II, BVMT-R, SDMT, TMT, BRIEF-A, and EMQ-R. Twelve participants were recruited, aged 39–73 years (mean: 55.08; SD: 9.61). There were statistically significant improvements in the GAS (p < .002), CVLT-II: total free recall (p < .000), short delay free recall (p < .018), long delay free recall (p < .008), BVMT-R total recall (p < .000), TMT part B (p < .044), and EMQ-R (p < .006). Except for the BRIEF-A, clinically significant improvements were observed in secondary outcome measures at posttest and follow-up. Limitations include selection bias and subtle practice effects in cognitive measures. Results suggest that a larger scale study is justified considering improvements seen in daily life and cognitive measures.

Intensive training but no benefits to everyday life: computerised cognitive training

In its current form, computerised cognitive training should not be used in occupational therapy practice. The evidence of effectiveness is just not convincing. Recent years have seen incredible changes in internet connectivity and the availability of computers and hand-held devices. This makes possible different forms of computerised training that can be used easily by large groups of people. If occupational therapists had an effective computerised training task available to them it would have the potential to speed the therapeutic process, allow them to treat more people and give patients the flexibility to practise from any location. Computers make it possible to produce repetitive training over long durations that can adapt to the user’s skill level. Computerised cognitive training typically consists of daily training (often five days a week) over a period of time that is generally for a minimum of four weeks, but is often significantly more. Daily training length also varies but typically sits somewhere between 15 and 30 minutes. The benefits of repetitive training have, however, generally proved elusive. With the surge in computerised training research in the healthy and developmental populations, unsurprisingly investigations into its potential efficacy following neurological damage have begun, particularly in traumatic brain injury, stroke, and more recently in people with multiple sclerosis.[1,2] Unfortunately, results have not shown any significant improvement to daily functioning for these populations. Systematic reviews of the topic have not been encouraging.[1,3] In many cases transfer to everyday life was not even measured in studies, which in itself questions the relevance of any findings to therapeutic practice. There is a strong need to develop evidence-based interventions that specifically target the areas of functioning that people have difficulty with.[2] Occupational therapy research has been slow to develop, and especially test, such interventions in neurological conditions when compared with its psychology counterparts. Much needs to be done to address this gap. It is encouraging that humans will get progressively better at almost any non-trivial task that they practise. This is evident in the literature as elsewhere. Wellpowered and conducted studies using randomisation and active, conservative control conditions have reported some generalisation of gains.[4–6] Numerous factors are likely to be relevant to these improvements including familiarity with what is required, increased confidence through success, the development of strategies that minimise task demands, and so forth. However, if tasks are practised in the hope of spreading benefits to everyday skills this needs to be demonstrated rather than assumed. It seems, to date, that studies with fewer participants are more likely to produce extreme, and in many cases unreliable, results. When combined with positive publication biases (from authors and journals) the picture is almost inevitably rosier than from a single high-powered (hence more reliable) study.[e.g. 6] It raises important cautionary points, particularly about the likely efficacy of the multibillion-dollar ‘brain training’ software industry’s products. It is now possible for people, including those at risk from cognitive impairment through age, neurological illness, or developmental difficulty, to engage in intensive computerised cognitive training at low financial cost. From a treatment and rehabilitation point of view the results are not encouraging: there is a real risk with current programmes that people would be spending long periods in ultimately fruitless activity. It is clear that as mixed and contradictory results continue to be found in terms of differing cognitive training regimes a full identification of the methodological issues needs to happen and be targeted before it makes its way into occupational therapy practice. We are an occupation-focused and evidence-driven profession and computerised training does not comfortably fit within this framework. Unless there

Is it possible to have both standardised and person-centred care?

Often in healthcare that we have a programmed way of responding. This is particularly true of assessment —covering questions, ticking boxes and making decisions. We are all aware of the importance of using standardised, reliable assessments and outcome measures but have we created an environment that seeks too much information? Have we come to a stage where we are too thorough in our interactions with patients and we are losing the person somewhere along the way in the process? Dementia is a common, complex and challenging condition, and a systematic needs assessment is essential in ensuring appropriate care is received. Needs assessments provide the groundwork from which to begin working with people. People with ‘complex needs’, such as people with dementia, often have the greatest number of unmet needs (Hancock et al., 2006) and are challenging in terms of assessment and providing person-centred care. Even with a clear view of the unmet needs of a person, intervening with dementia can be complicated. Can you have standardised, yet person-centred care? If staff were trained to work under a comprehensive model to guide their care, person-centred standardised care may be possible. Introducing the Biopsychosocial Model of Dementia (for full description, see Spector & Orrell, 2010) as a framework with which to work with residents of care homes could prove effective. The biopsychosocial (BPS) model (Spector & Orrell, 2010) views dementia as having both fixed and tractable factors. Fixed factors cannot be changed, whereas tractable factors may be identified and focused on in intervention. The BPS model presents dementia as a condition that can be changed though individualised intervention—both pharmacological and non-pharmacological. By carefully selecting treatments that focus on the aspects that can be changed, it may be possible to positively impact the individual with dementia. Dementia could act as a litmus test of sorts here. If the model works and applies with the complexities of dementia, then the likelihood of them working with other residents is quite high. A systematic needs assessment would play a key role here as a first step in identifying these fixed and tractable factors. Orrell et al. (2007) found that the process of carrying out a needs assessment can lead to a decrease in unmet needs among residents—making staff and carers aware of areas of need could lead to changes even without a structured intervention. The BPS model gives a holistic overview of the person which accounts for these life changes, such as changes of roles, responsibilities and habits, and maintains the residents’ ‘personhood’, as described by Kitwood (1997). Together, they identify where the intervention is needed, in terms of biological and psychosocial factors, and what can be changed in order to achieve this. Taking the entire timeline of the person into consideration allows you to plan for the future and also work with the strengths that have come from that person’s past experiences and strategies of coping. Using a needs assessment under the BPS model encourages partnership with the residents and ensures appropriate, targeted, person-centred care. Dementia is ever-increasingly being viewed as something that is amenable to change, and residents are being acknowledged as the experts of their own condition. Using a rigorous needs assessment under a holistic model, such as the BPS model, and implementing well-evidenced person-centred interventions in care homes have the potential to positively impact the person with dementia and their carer. We may lose some of the rigour of standardisation in striving to be patient-focused, but if the end result benefits the patient, then the right result is achieved. We must at least try to achieve this standard of person-focused yet rigorous assessment.