The Impact of Cognitive Functioning on Daily Occupations for People with Multiple Sclerosis: A Qualitative Study

Background: Cognitive rehabilitation research in multiple sclerosis is ever-developing, but the impact of cognitive difficulties, seen in 40% to 80% of people, on daily occupations is not well known. The aim of this study is to explore the needs of people with MS who have self-reported cognitive deficits. Methods: An exploratory qualitative descriptive research design was used. Data was collected through semi-structured telephone interviews with the participants. Recordings were transcribed and analyzed thematically. Results: Seven participants were recruited (mean age 47). Three themes were developed through associations found in the data. “Neglected symptom” reported the participants’ frustrations around the importance afforded to cognition by health care providers. “Impact on participation in daily occupations” described the everyday impacts of cognitive difficulties. “Adaptations and adjustments to continued participation” reported how the participants manage, despite their difficulties. Conclusion: The findings describe how cognitive difficulties affect individuals with multiple sclerosis and their occupations, as well as the dissatisfaction felt with the progress in and access to cognitive treatment and research. The results indicate the need for occupation-focused interventions in cognition for people with multiple sclerosis that address daily challenges

Training working memory and fluid intelligence in older adults: developing measures and exploring outcomes

This thesis investigates computerised cognitive training in older adults, with a focus on training working memory and fluid intelligence. A series of studies is reported, with two broad aims. The first was to develop and validate outcome measures appropriate for use in this population, and the second was to examine whether established gains in cognitive functioning generalised to everyday life. In relation to the first aim, two studies were conducted which concerned the development of a sensitive measure of organisational abilities within a computerised paradigm, the Games Evaluation Task (GET). A further study made use of an existing naturalistic measure, the Multiple Errands Task (MET, Shallice & Burgess, 1991), and investigated whether it was possible to obtain reliable ratings of performance on the basis of video footage taken from the participant’s perspective by means of a body-worn camera. Both the GET and MET were used as outcome measures in the subsequent training studies. In relation to the second aim, three studies of cognitive training are reported. The first is a case study of a man with problems in working memory and time perception following a stroke. He underwent training on an intensive working memory package within a single-case experimental design that incorporated an active control condition. This approach was then extended in a larger sample of healthy older adults, who trained intensively on tasks that focussed either on working memory, or fluid intelligence and problem solving. In the final study participants trained on a combination of both working memory and fluid intelligence tasks. In addition, they watched training videos that focused on teaching various cognitive strategies. The aim of this video supplement was to help participants draw links between the computer training and real-life situations, and hence to foster generalisation of any benefits to everyday life. The thesis concludes with a general discussion which examines the major findings of the studies presented, their clinical applications, the limitations of the research and possible future directions

Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial.

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953

Community Occupational Therapy in Dementia intervention for people with mild to moderate dementia and their family carers in the UK: the VALID research programme including RCT

BackgroundPeople with dementia find it increasingly difficult to carry out daily activities (activities of daily living), and may require increasing support from family carers. Researchers in the Netherlands developed the Community Occupational Therapy in Dementia intervention, which was delivered in 10 1-hour sessions over 5 weeks to people with dementia and their family carers at home. Community Occupational Therapy in Dementia was found to be clinically effective and cost-effective.ObjectivesTranslate and adapt Community Occupational Therapy in Dementia to develop the Community Occupational Therapy in Dementia - the UK version intervention and training programme and to optimise its suitability for use within the UK. To estimate the clinical effectiveness and cost-effectiveness of Community Occupational Therapy in Dementia - the UK version for people with mild to moderate dementia and their family carers compared with treatment as usual.DesignThe development phase used mixed methods to develop Community Occupational Therapy in Dementia - the UK version: translation, expert review, and adaptation of the manual and training materials; training occupational therapists; focus groups and interviews, including occupational therapists, managers, people with dementia and family carers; consensus conference; and an online survey of occupational therapists to scope UK practice. A multicentre, two-arm, parallel-group, single-blind individually randomised pragmatic trial was preceded by an internal pilot. Pairs were randomly allocated between Community Occupational Therapy in Dementia - the UK version and treatment as usual. A cost–utility analysis, fidelity study and qualitative study were also completed.SettingCommunity services for people with dementia across England.ParticipantsPeople with mild to moderate dementia recruited in pairs with a family carer/supporter.InterventionsCommunity Occupational Therapy in Dementia - the UK version is an activity-based, goal-setting approach for people with dementia and family carers, and is delivered at home by an occupational therapist for 10 hours over 10 weeks. Treatment as usual comprised the usual local service provision, which may or may not include standard occupational therapy.Main outcome measuresData were collected through interviews conducted in person with dyads at baseline and at 12 and 26 weeks post randomisation, and then over the telephone with a reduced sample of just carers at 52 and 78 weeks post randomisation. The primary outcome was the Bristol Activities of Daily Living Scale at 26 weeks. The secondary outcomes were as follows: person with dementia – cognition, activities of daily living, quality of life and mood; carer – sense of competence, quality of life and mood; all participants – social contacts, leisure activities and serious adverse events.ResultsThe Community Occupational Therapy in Dementia manual and training materials were translated and reviewed. In total, 44 occupational therapists were trained and delivered Community Occupational Therapy in Dementia to 130 pairs. A total of 197 occupational therapists completed the survey, of whom 138 also provided qualitative data. In total, 31 people attended the consensus conference. Community Occupational Therapy in Dementia - the UK version has more flexibility than Community Occupational Therapy in Dementia in terms of content and delivery; for example, occupational therapists can use the wider range of assessment tools that are already in regular use within UK practice and the time span for delivery is 10 weeks to better meet the needs of pairs and be more feasible for services to deliver. In total, 31 occupational therapists provided Community Occupational Therapy in Dementia - the UK version within the randomised controlled trial. A total of 468 pairs were randomised (249 pairs to Community Occupational Therapy in Dementia - the UK version, 219 pairs to treatment as usual). People with dementia ranged in age from 55 to 97 years (mean 78.6 years), and family carers ranged in age from 29 to 94 years (mean 69.1 years). The majority of those with dementia (74.8%) were married; 19.2% lived alone. Most family carers (72.6%) were spouses but 22.2% were adult children. At 26 weeks, 406 (87%) pairs remained in the trial, and the Bristol Activities of Daily Living Scale total score did not differ at the 5% level when comparing groups (adjusted mean difference estimate 0.35, 95% confidence interval –0.81 to 1.51; p = 0.55). The adjusted (for baseline Bristol Activities of Daily Living Scale total score and randomised group) intracluster correlation coefficient estimate at week 26 was 0.043. There were no significant differences in secondary outcomes. At 52 and 78 weeks, there were no differences between the two groups in Bristol Activities of Daily Living Scale total score and secondary outcomes. The probability that Community Occupational Therapy in Dementia - the UK version is cost-effective at a threshold of willingness to pay per quality-adjusted life-year of £20,000 is 0.02%. In the qualitative interviews, participants reported positive benefits and outcomes. Of the 249 pairs allocated to Community Occupational Therapy in Dementia - the UK version, 227 reached the goal-setting phase, and 838 of the 920 goals set (90.8%) were fully or partially achieved.LimitationsThe development phase took longer than estimated because of translation time and organisational delays in delivering the intervention. Recruitment to the randomised controlled trial took longer than expected. Fidelity overall was moderate, with variation across sites and therapists. It is possible that Community Occupational Therapy in Dementia - the UK version did not work well in the UK service model in which usual care differs from that in the Netherlands.ConclusionsThis programme used a rigorous process to develop Community Occupational Therapy in Dementia - the UK version but found no statistical evidence of clinical effectiveness or cost-effectiveness compared with usual care. Qualitative findings provided positive examples of how Community Occupational Therapy in Dementia - the UK version had enabled people to live well with dementia

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 (pThis research was supported by funding from the National University of Ireland Galway Millennium Fund 2016/2017.peer-reviewe

A cognitive occupation-based programme for people with multiple sclerosis: A new occupational therapy cognitive rehabilitation intervention

Introduction: Cognitive difficulties have been reported to have the greatest effect on function and quality of life in people with multiple sclerosis, affecting 50 60% of people. To date, few interventions have been developed to treat cognitive issues in multiple sclerosis. Here we report on a Cognitive Occupation-Based programme (COB-MS) for people with Multiple Sclerosis an evidence-based intervention to address everyday problems encountered due to cognitive difficulties. The aim of this research was to explore the views of people with multiple sclerosis and occupational therapists on the programme and its potential implementation in practice. Methods: Data were elicited from a purposive sample of 12 people from two stakeholder groups, people with multiple sclerosis (n ¼ 5) and occupational therapists (n ¼ 7), through focus groups and interviews. The programme and related materials were presented, and contributions recorded, transcribed and thematically analysed. Results: Two main themes were identified from analysis of the data: response to the intervention and challenges to implementing the programme. Occupational therapists agreed that the COB-MS is client-centred. People with multiple sclerosis thought that it was a validating intervention. The overall format was viewed to be useful and feasible. Conclusion: The COB-MS for people with Multiple Sclerosis is the first known cognitive intervention using an occupation frame of reference to address difficulties faced among persons with multiple sclerosis and was found to be timely and relevant to the needs of the population.This research is funded in part by a National MS Society Postdoctoral Fellowship Award #MB 0016 and the Occupational Science and Occupational Therapy Research Initiative Fund Seed Grant 2015.peer-reviewe

Validating an Irish-language version of the Rivermead Behavioural Memory Test - Second Edition

Journal articleThis 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

The impact of cognitive functioning on daily occupations for people with multiple sclerosis: A qualitative study

Background: Cognitive rehabilitation research in multiple sclerosis is ever-developing, but the impact of cognitive difficulties, seen in 40% to 80% of people, on daily occupations is not well known. The aim of this study is to explore the needs of people with MS who have self-reported cognitive deficits. Methods: An exploratory qualitative descriptive research design was used. Data was collected through semi-structured telephone interviews with the participants. Recordings were transcribed and analyzed thematically. Results: Seven participants were recruited (mean age 47). Three themes were developed through associations found in the data. Neglected symptom reported the participants frustrations around the importance afforded to cognition by health care providers. Impact on participation in daily occupations described the everyday impacts of cognitive difficulties. Adaptations and adjustments to continued participation reported how the participants manage, despite their difficulties. Conclusion: The findings describe how cognitive difficulties affect individuals with multiple sclerosis and their occupations, as well as the dissatisfaction felt with the progress in and access to cognitive treatment and research. The results indicate the need for occupation-focused interventions in cognition for people with multiple sclerosis that address daily challenges.peer-reviewe

Dementia service needs and recommendations for LGBTQIA+ community

Dementia service needs and recommendations for LGBTQIA+ communit