Reflections on a personalized cognitive rehabilitation intervention: Experiences of people living with dementia and their carers participating in the GREAT trial.

Cognitive rehabilitation for people living with early-stage dementia improves functional ability in areas targeted in the therapy, but little is known about how participants experience this intervention. This qualitative paper investigates participants' views about a cognitive rehabilitation intervention in a randomized controlled trial (the GREAT trial) and aims to help explain and interpret the findings and to inform further intervention development. Using in-depth thematic analysis, 43 semi-structured interviews (35 individual and 8 dyadic) were conducted with 25 people living with dementia and 26 family carers from three sites. The person-centred, individualized approach was valued. Some participants' views about dementia were questioned as a consequence of taking part in the therapy; they considered the effectiveness of the intervention in the context of the progressive nature of the condition. Certain participants continued to be doubtful, focussing on the inevitability of decline, rather than the possibility of reablement. Such views may have influenced engagement. The therapeutic relationship played a vital role as it was how personalized care was provided and participants' views had changed positively. Therapists engendered greater confidence and reduced anxiety and social isolation. Positive responses support personalized rehabilitative care to address the specific needs of people living with dementia.

How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians.

LAY ABSTRACT: Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets.

UK clinicians' views on the use of formulations for the management of BPSD: a multidisciplinary survey.

BACKGROUND AND OBJECTIVES: The process of formulating in the area of dementia care is at an early stage of development. A review published in 2016, identified 14 different types of formulation-based approaches for the management of Behavioural and Psychological Symptoms of Dementia (BPSD). The present study examines professionals' views about the use of systematic formulations for choosing first-line non-pharmacological interventions for BPSD. METHODS: A 34-item online survey, with six items about formulation-based interventions for the management of BPSD, was circulated to multi-disciplinary UK dementia networks. Quantitative data were examined for the use of formulation-based frameworks in practice. Thematic analyses provided insight into the practicalities of using formulations. RESULTS: The majority of the 355 participants responding to the questions stated they used formulation-led models to inform interventions, but 24% stated they did not. Thirty-two types of formulation frameworks were named, and there was a diverse spread across the UK. The Newcastle model was the most frequently used framework, with fifty percent of the participants who formulated reporting using this framework. Four themes regarding the use of formulation emerged, relating to function, process, reported outcomes and obstacles. CONCLUSION: Formulation-based approaches to targeting intervention are becoming popular in dementia care in the UK. More types of formulation frameworks are used in practice compared with the 2016 review. The use of formulations are seen as key to offering an alternative to pharmacological treatments. Understanding both the value of formulation-led approaches and the obstacles to their use are important to implementing NICE 2018 recommendations.

Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: the GREAT RCT.

BACKGROUND: Cognitive rehabilitation (CR) is an individualised, person-centred intervention for people with mild to moderate dementia that addresses the impact of cognitive impairment on everyday functioning. OBJECTIVES: To determine whether or not CR is a clinically effective and cost-effective intervention for people with mild to moderate Alzheimer's disease or vascular or mixed dementia, and their carers. DESIGN: This multicentre randomised controlled trial compared CR with treatment as usual (TAU). Following a baseline assessment and goal-setting to identify areas of everyday functioning that could be improved or better managed, participants were randomised (1 : 1) via secure web access to an independent randomisation centre to receive either TAU or CR and followed up at 3 and 9 months post randomisation. SETTING: Community. PARTICIPANTS: Participants had an International Classification of Diseases, Tenth Edition, diagnosis of Alzheimer's disease or vascular or mixed dementia, had mild to moderate cognitive impairment (Mini Mental State Examination score of ≥ 18 points), were stable on medication if prescribed, and had a family carer who was willing to contribute. The exclusion criteria were people with a history of brain injury or other neurological disorder and an inability to speak English. To achieve adequate power, we needed 350 people to complete the trial, with 175 people in each trial arm. INTERVENTION: Cognitive rehabilitation consisted of 10 therapy sessions over 3 months, followed by four maintenance sessions over 6 months, delivered in participants' homes. The therapists were nine occupational therapists and one nurse. OUTCOME MEASURES: The primary outcome was self-reported goal attainment at 3 months. Goal attainment was also assessed at 9 months. Carers provided independent ratings of goal attainment at both time points. The secondary outcomes were participant quality of life, mood, self-efficacy and cognition, and carer stress, health status and quality of life. The assessments at 3 and 9 months were conducted by researchers who were blind to the participants' group allocation. RESULTS: A total of 475 participants were randomised (CR arm, n = 239; TAU arm, n = 236), 427 participants (90%) completed the trial and 426 participants were analysed (CR arm, n = 208, TAU arm, n = 218). At 3 months, there were statistically significant large positive effects for participant-rated goal attainment [mean change in the CR arm: 2.57; mean change in the TAU arm: 0.86; Cohen'sd = 0.97, 95% confidence interval (CI) 0.75 to 1.19], corroborated by carer ratings (Cohen'sd = 1.11, 95% CI 0.89 to 1.34). These effects were maintained at 9 months for both the participant ratings (Cohen's d = 0.94, 95% CI 0.71 to 1.17) and the carer ratings (Cohen's d = 0.96, 95% CI 0.73 to 1.20). There were no significant differences in the secondary outcomes. In the cost-utility analyses, there was no evidence of cost-effectiveness in terms of gains in the quality-adjusted life-years (QALYs) of the person with dementia (measured using the DEMentia Quality Of Life questionnaire utility score) or the QALYs of the carer (measured using the EuroQol-5 Dimensions, three-level version) from either cost perspective. In the cost-effectiveness analyses, by reference to the primary outcome of participant-rated goal attainment, CR was cost-effective from both the health and social care perspective and the societal perspective at willingness-to-pay values of £2500 and above for improvement in the goal attainment measure. There was no evidence on the cost-effectiveness of the self-efficacy measure (the Generalized Self-Efficacy Scale) from either cost perspective. LIMITATIONS: Possible limitations arose from the non-feasibility of using observational outcome measures, the lack of a general measure of functional ability and the exclusion of people without a carer or with rarer forms of dementia. CONCLUSIONS: Cognitive rehabilitation is clinically effective in enabling people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy sessions. FUTURE WORK: Next steps will focus on the implementation of CR into NHS and social care services and on extending the approach to people with rarer forms of dementia. TRIAL REGISTRATION: Current Controlled Trials ISRCTN21027481. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 10. See the NIHR Journals Library website for further project information.

BACKGROUND: Cognitive rehabilitation (CR) is a personalised intervention to help people with early-stage dementia to manage everyday activities. This individualised therapy is conducted in people's own homes over several sessions. A therapist works with the person and the carer to identify realistic and relevant goals, plan how to tackle these and support people in achieving them. Previous small studies suggested that CR could be beneficial. METHODS: The Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer's and related dementias: multicentre single-blind randomised controlled Trial (GREAT) was run in eight centres to find out whether or not CR improves everyday functioning. Participants were in the early stages of having Alzheimer's disease, vascular dementia or mixed dementia, with a family carer involved. At the first assessment, participants identified areas in which they would like to see improvements, and set goals. Participants and carers rated how well participants were currently doing in relation to these goals and completed questionnaires, for example about mood and quality of life. Participants were then randomly selected to either receive CR or continue with treatment as usual (TAU). CR consisted of 10 weekly sessions with the therapist over 3 months, followed by four sessions over the next 6 months. Participants were reassessed after 3 and 9 months. RESULTS: We included 475 participants, and 427 participants (90%) completed the trial (209 participants in the CR arm and 218 participants in the TAU arm). After 3 months, the ratings by both participants and carers in the CR group showed that participants were doing significantly better in relation to their goals, and this was maintained 6 months later. Ratings for the TAU-arm participants did not improve significantly. There were no other differences between the groups. There was a strong economic case for CR. CONCLUSIONS: Cognitive rehabilitation is effective in enabling people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy sessions. Next steps will focus on the implementation of CR into NHS and social care services.

Individual goal-oriented cognitive rehabilitation to improve everyday functioning for people with early-stage dementia: A multicentre randomised controlled trial (the GREAT trial).

OBJECTIVES: To determine whether individual goal-oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild-to-moderate dementia. DESIGN AND METHODS: Parallel group multicentre single-blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD-10 diagnosis of Alzheimer, vascular or mixed dementia, and mild-to-moderate cognitive impairment (Mini-Mental State Examination [MMSE] score ≥ 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months. Participants were followed up 3 and 9 months post randomisation by blinded researchers. The primary outcome was self-reported goal attainment at 3 months. Secondary outcomes at 3 and 9 months included informant-reported goal attainment, quality of life, mood, self-efficacy, and cognition and study partner stress and quality of life. RESULTS: We randomised (1:1) 475 people with dementia; 445 (CR = 281) were included in the intention to treat analysis at 3 months and 426 (CR = 208) at 9 months. At 3 months, there were statistically significant large positive effects for participant-rated goal attainment (d = 0.97; 95% CI, 0.75-1.19), corroborated by informant ratings (d = 1.11; 95% CI, 0.89-1.34). These effects were maintained at 9 months for both participant (d = 0.94; 95% CI, 0.71-1.17) and informant (d = 0.96; 95% CI, 0.73-1.2) ratings. The observed gains related to goals directly targeted in the therapy. There were no significant differences in secondary outcomes. CONCLUSIONS: CR enables people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy.

Therapeutic Lies in Dementia Care: Should Psychologists Teach Others to be Person-Centred Liars?

BACKGROUND: Therapeutic lies are frequently used communication strategies, often employed when the person with dementia does not share the same reality as the carer (James and Jackman, 2017; Tuckett 2004; Blum, 1994). Their use is complex and controversial, and a number of protocols have been produced to guide their usage (Mental Health Foundation, 2016). AIMS: The study examined clinicians' perspective on using therapeutic lies in their daily practice and their roles in encouraging the proper use of such a communication strategy. METHOD: This project sampled the views of clinicians, mainly psychologists, before and after attending a workshop on communication in dementia care; they were asked whether psychologists should have a role in teaching others to lie more effectively. RESULTS: It was found that following a comprehensive discussion on the use of lies, the clinicians recognized they lied more than they had originally thought, and were also significantly more supportive of having a role in teaching others to lie effectively. CONCLUSIONS: Clinicians, mainly psychologists, increased their support in the use of therapeutic lying. They considered others would benefit from the psychologists giving supervision in how to lie effectively.

A process evaluation of a Psychomotor Dance Therapy Intervention (DANCIN) for behavior change in dementia: attitudes and beliefs of participating residents and staff.

BACKGROUND: In a previous paper, we presented results from a 12-week study of a Psychomotor DANCe Therapy INtervention (DANCIN) based on Danzón Latin Ballroom that involves motor, emotional-affective, and cognitive domains, using a multiple-baseline single-case design in three care homes. This paper reports the results of a complementary process evaluation to elicit the attitudes and beliefs of home care staff, participating residents, and family members with the aim of refining the content of DANCIN in dementia care. METHODS: An external researcher collected bespoke questionnaires from ten participating residents, 32 care home staff, and three participants' family members who provided impromptu feedback in one of the care homes. The Behavior Change Technique Taxonomy v1 (BCTTv1) provided a methodological tool for identifying active components of the DANCIN approach warranting further exploration, development, and implementation. RESULTS: Ten residents found DANCIN beneficial in terms of mood and socialization in the care home. Overall, 78% of the staff thought DANCIN led to improvements in residents' mood; 75% agreed that there were improvements in behavior; 56% reported increased job satisfaction; 78% of staff were enthusiastic about receiving further training. Based on participants' responses, four BCTTv1 labels-Social support (emotional), Focus on past success and verbal persuasion to boost self-efficacy, Restructuring the social environment and Habit formation-were identified to describe the intervention. Residents and staff recommended including additional musical genres and extending the session length. Discussions of implementing a supervision system to sustain DANCIN regularly regardless of management or staff turnover were suggested. CONCLUSIONS: Care home residents with mild to moderate dementia wanted to continue DANCIN as part of their routine care and staff and family members were largely supportive of this approach. This study argues in favor of further dissemination of DANCIN in care homes. We provide recommendations for the future development of DANCIN based on the views of key stakeholder groups.

Older adults' views and experiences of doll therapy in residential care homes.

BACKGROUND AND PURPOSE: The mechanisms underlying the success of doll therapy are poorly understood. The aims of this study were to explore how people in care, doll users and non-users, make sense of doll use in their settings. METHODOLOGY: A grounded theory approach was used, recruiting participants from three residential care homes involving four male and 12 female residents. Data collection occurred in two phases; five participants took part in a focus group and later 11 participants were interviewed individually. Eight of the 11 participants had dementia, and four participants were actively using dolls. RESULTS AND CONCLUSION: The results are presented as themes, and sub-themes, consisting of four main categories (intrapersonal features, interpersonal features, behavioural benefits, ethical and moderating factors). This thematic analysis shows that residents generally support the use of dolls, believing that dolls can have a positive impact on some users. The mechanisms by which this impact is achieved are discussed together with the ethical concerns.

Micro-skills of group formulations in care settings.

This study examines some of the micro-skills associated with the moment-to-moment decisions and actions involved in delivering group formulation sessions in dementia care settings. We discuss the therapeutic framework used by therapists from a number of Challenging Behaviour Services in the UK (Newcastle, Northumberland, South Tyneside, Teesside, Sutton and Merton, Northern Ireland) which is frequently referred to as the Newcastle or Colombo approach. Through a theoretical review and practice illustration, the study pays particular attention to the role of therapists' questions and questioning styles in group formulation sessions, providing a framework which aims to facilitate care staffs' understanding, reflection and empathy regarding their residents who are displaying 'challenging behaviours'. The study also provides a potential guide to the training of therapists working in this area and thereby attempts to benefit clinical practices in an area where pharmacological approaches are usually the treatment of choice.

Christian worship leaders' attitudes and observations of people with dementia.

BACKGROUND: The cognitive, emotional, and psychological consequences of dementia are profound and can include memory loss, processing and, communication difficulties, social isolation and agitation. Procedural memory remains fairly intact in people with dementia (PWD) and is readily triggered via sensory cues and prompts. As religious services are often highly structured, it is likely that PWD can participate competently, potentially enhancing their quality of life, and wellbeing. AIMS: This study aimed to investigate Christian worship leaders' attitudes and observations of PWD attending religious services, to identify recurring themes, and to generate hypotheses regarding the effects of participation in religious services on PWD. METHOD: The participants were Christian worship leaders experienced in conducting religious services for PWD. The study adopted a grounded theory approach consisting of two phases: a focus group of four worship leaders at Phase 1 and a series of one-to-one interviews with eight worship leaders at Phase 2. RESULTS: Five linked themes emerged: familiarity and structure; enhanced sensory cues; significance of worship leader's approach; social support from and for family and carers; and the personality and characteristics of the PWD. These themes were used to develop a conceptual model, sharing the moderating and mediating factors of wellbeing. CONCLUSION: Religious worship appeared to constitute a naturalistic psychosocial intervention comprised of the service itself and the social context. Further investigation and conceptualisation of the interaction between PWD and their social environment is warranted, and collaboration with those people who constitute the PWD's social support network.

Do people with dementia find lies and deception in dementia care acceptable?

OBJECTIVES: Research suggests that the use of lies and deception are prevalent in dementia care settings. This issue has been explored from the view point of carers and professionals, and the acceptability and ethicality of deception in dementia care remains an area of heated debate. This article explored the issue of lies and deception in dementia care from the unique perspective of the people being lied to: People with Dementia. METHOD: This study used a qualitative methodology, specifically, Grounded Theory (GT). The study used a two-phased design. Phase one involved a series of one-to-one interviews with People with Dementia. During phase two, the participants were re-interviewed in order to develop the emerging theory. RESULTS: Lies were considered to be acceptable if told in People with Dementia's best interest. This best interest decision was complex, and influenced by factors such as the person with dementia's awareness of the lie, and the carer's motivation for lying. A model depicting these factors is discussed. CONCLUSION: This study enables the perspective of People with Dementia to be considered, therefore providing a more complete understanding of the use of deceptive practices in dementia care settings. This study suggests that the use of lies and deception in dementia care warrants further investigation.

Brief psychosocial therapy for the treatment of agitation in Alzheimer disease (the CALM-AD trial).

BACKGROUND: Good practice guidelines state that a psychological intervention should usually precede pharmacotherapy, but there are no data evaluating the feasibility of psychological interventions used in this way. METHODS: At the first stage of a randomized blinded placebo-controlled trial, 318 patients with Alzheimer disease (AD) with clinically significant agitated behavior were treated in an open design with a psychological intervention (brief psychosocial therapy [BPST]) for 4 weeks, preceding randomization to pharmacotherapy. The therapy involved social interaction, personalized music, or removal of environmental triggers. RESULTS: Overall, 318 patients with AD completed BPST with an improvement of 5.6 points on the total Cohen-Mansfield Agitation Inventory (CMAI; mean [SD], 63.3 [16.0] to 57.7 [18.4], t = 4.8, df = 317, p < 0.0001). Therapy worksheets were completed in six of the eight centers, with the key elements of the intervention delivered according to the manual for >95% of patients. More detailed evaluation of outcome was completed for the 198 patients with AD from these centers, who experienced a mean improvement of 6.6 points on the total CMAI (mean [SD], 62.2 [14.3] to 55.6 [15.8], t = 6.5, df = 197, p < 0.0001). Overall, 43% of participants achieved a 30% improvement in their level of agitation. CONCLUSION: The specific attributable benefits of BPST cannot be determined from an open trial. However, the BPST therapy was feasible and was successfully delivered according to an operationalized manual. The encouraging outcome indicates the need for a randomized controlled trial of BPST.

Impact of training on rating competence in cognitive therapy.

This naturalistic study examines the impact of a training package on the inter-rater reliability scores of a scale devised to measure competence in cognitive therapy (CT). The study was conducted at the Newcastle Cognitive and Behavioural Therapies Centre, where trainees are routinely required to submit videotapes of their therapeutic work for marking independently by two supervisors. This process was used as vehicle for the present work, whereby the trainees' videos were assessed in terms of their competence using a recently revised rating scale (CTS-R). The inter-rater reliability of the supervisors' ratings was assessed both before and after the administration of a teaching package designed to improve the reliability in the use of the CTS-R. The results showed an improvement in the inter-rater agreement of five out of 12 items of the scale. The overall agreement also improved significantly following training.

The observed impact of training on competence in clinical supervision.

OBJECTIVES: The present study analysed the impact and relative effectiveness of routine training (consultancy) versus routine training plus feedback on clinical supervision. DESIGN: The behaviours of one supervisor and six supervisees were observed longitudinally, and comparisons made between a baseline condition and two subsequent experimental training conditions (with and without feedback) and a maintenance period. METHOD: An observational instrument was used to code N = 1387 interactions between the supervisor and the supervisees. Supervisees' satisfaction with supervision was also recorded longitudinally. RESULTS: The inter-observer reliability was very good initially (K > or = 0.81) and did not "drift". Supervision improved during the experimental phase, but most markedly during the maintenance phase. The results appear to reflect a lag effect for the interventions, which can be most readily explained in terms of a socialization period during which both supervisor and supervisee adapted their styles of interaction. CONCLUSION: Competence in supervision appears to require training. The present methodology affords a promising approach to developing and analysing the effectiveness of supervision.