Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.

INTRODUCTION: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. METHODS: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. RESULTS: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. CONCLUSION: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. PATIENT OR PUBLIC CONTRIBUTION: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.

Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial.

OBJECTIVE: To determine the effectiveness of an exercise and functional activity therapy intervention in adults with early dementia or mild cognitive impairment compared with usual care. DESIGN: Randomised controlled trial. SETTING: Participants' homes and communities at five sites in the United Kingdom. PARTICIPANTS: 365 adults with early dementia or mild cognitive impairment who were living at home, and family members or carers. INTERVENTION: The intervention, Promoting activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED), was a specially designed, dementia specific, rehabilitation programme focusing on strength, balance, physical activity, and performance of activities of daily living, which was tailored and progressive and addressed risk and the psychological needs of people with dementia. Up to 50 therapy sessions were provided over 12 months. The control group received usual care plus a falls risk assessment. Procedures were adapted during the covid-19 pandemic. MAIN OUTCOME MEASURES: The primary outcome was score on the carer (informant) reported disability assessment for dementia scale 12 months after randomisation. Secondary outcomes were self-reported activities of daily living, physical activity, quality of life, balance, functional mobility, fear of falling, frailty, cognition, mood, carer strain, service use at 12 months, and falls between months 4 and 15. RESULTS: 365 patient participants were randomised, 183 to intervention and 182 to control. The median age of participants was 80 years (range 65-95), median Montreal cognitive assessment score was 20 out of 30 (range 13-26), and 58% (n=210) were men. Intervention participants received a median of 31 therapy sessions (interquartile range 22-40) and reported completing a mean 121 minutes of PrAISED exercise each week. Primary outcome data were available for 149 intervention and 141 control participants. Scores on the disability assessment for dementia scale did not differ between groups: adjusted mean difference -1.3, 95% confidence interval -5.2 to 2.6; Cohen's d effect size -0.06, 95% confidence interval -0.26 to 0.15; P=0.51). Upper 95% confidence intervals excluded small to moderate effects on any of the range of outcome measures. Between months 4 and 15 the intervention group experienced 79 falls and the control group 200 falls (adjusted incidence rate ratio 0.78, 95% confidence interval 0.5 to 1.3; P=0.3). CONCLUSION: The intensive PrAISED programme of exercise and functional activity training did not improve activities of daily living, physical activity, or quality of life; reduce falls; or improve any other secondary health status outcomes, despite good uptake. Future research should consider alternative approaches to maintaining ability and wellbeing in people with dementia. TRIAL REGISTRATION: ISRCTN Registry ISRCTN15320670.

The facilitators and barriers to improving functional activity and wellbeing in people with dementia: a qualitative study from the process evaluation of Promoting Activity, Independence and Stability in Early Dementia (PrAISED).

BACKGROUND: The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial showed no measurable benefits in activities of daily living, physical activity or quality of life. OBJECTIVE: To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so. METHODS: A process evaluation using qualitative methods, comprising interviews and researcher notes. SETTING: Data were collected in participants' homes or remotely by telephone or videoconferencing. SAMPLE: A total of 88 interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. A total of 69 interviews were conducted with 26 therapists. RESULTS: Participants valued the intervention as proactively addressing health issues that were of concern to them, and as a source of social contact, interaction, information and advice. Facilitators to achieving positive outcomes included perceiving progress towards desired goals, positive expectations, therapists' skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carry-over between sessions; chronic physical health problems and intercurrent acute illness and injury; 'tapering' (progressively infrequent supervision intended to help develop habits and independent activity); and the COVID-19 pandemic. CONCLUSIONS: Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame 'health gain' and trial outcomes.

Association between pain intensity and depressive symptoms in community-dwelling adults: longitudinal findings from the Survey of Health, Ageing and Retirement in Europe (SHARE).

PURPOSE: To investigate the longitudinal associations between pain and depressive symptoms in adults. METHODS: Prospective cohort study on data from 28,515 community-dwelling adults ≥ 50 years, free from depression at baseline (Wave 5), with follow-up in Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE). Significant depressive symptoms were defined by a EURO-D score ≥ 4. The longitudinal association between baseline pain intensity and significant depressive symptoms at follow-up was analysed using logistic regression models; odds ratios (ORs) and confidence intervals (CI) were calculated, adjusting for socio-demographic and clinical factors, physical inactivity, loneliness, mobility and functional impairments. RESULTS: Mean age was 65.4 years (standard deviation 9.0, range 50-99); 14,360 (50.4%) participants were women. Mean follow-up was 23.4 (standard deviation 3.4) months. At baseline, 2803 (9.8%) participants reported mild pain, 5253 (18.4%) moderate pain and 1431 (5.0%) severe pain. At follow-up, 3868 (13.6%) participants-1451 (10.3%) men and 2417 (16.8%) women-reported significant depressive symptoms. After adjustment, mild, moderate and severe baseline pain, versus no pain, were associated with an increased likelihood of significant depressive symptoms at follow-up: ORs (95% CI) were 1.20 (1.06-1.35), 1.32 (1.20-1.46) and 1.39 (1.19-1.63), respectively. These associations were more pronounced in men compared to women, and consistent in participants aged 50-64 years, those without mobility or functional impairment, and those without loneliness at baseline. CONCLUSION: Higher baseline pain intensity was longitudinally associated with a greater risk of significant depressive symptoms at 2-year follow-up, in community-dwelling adults without baseline depression.

"We Just Don't Know Where They Are": The Geographical Distribution of Exercise Classes for Older People, Including Those Living with Dementia in the East Midlands.

Older people living with dementia are advised to exercise to remain independent. Although several exercise classes for older people take place across the UK, there is limited information about the geographical distribution of these classes. This study identified the location and explored the population characteristics of the classes in a UK region, to aid improved access to exercise. Using a geographical information system, data were collected on population characteristics, including size and age, socio-economic status, and rurality of the exercise classes in one area of the UK (East Midlands, population 5 million). The relationship between data sets was explored and a visual representation of these patterns was provided. A systematic internet search identified 520 exercise classes, evenly spread across the region and areas of socio-economic deprivation: 471 (90%) were in urban areas; 428 (80%) were in areas where less than 20% of the population was over 65 years of age; and 13 (2%) stated that they were suitable for people with dementia. People living with dementia are less likely than older people without dementia to have access to exercise classes.

Chronic pain in people living with dementia: challenges to recognising and managing pain, and personalising intervention by phenotype.

Pain is common in people with dementia, and pain can exacerbate the behavioural and psychological symptoms of dementia. Effective pain management is challenging, not least in people with dementia. Impairments of cognition, communication and abstract thought can make communicating pain unreliable or impossible. It is unclear which biopsychosocial interventions for pain management are effective in people with dementia, and which interventions for behavioural and psychological symptoms of dementia are effective in people with pain. The result is that drugs, physical therapies and psychological therapies might be either underused or overused. People with dementia and pain could be helped by assessment processes that characterise an individual's pain experience and dementia behaviours in a mechanistic manner, phenotyping. Chronic pain management has moved from a 'one size fits all' approach, towards personalised medicine, where interventions recommended for an individual depend upon the key mechanisms underlying their pain, and the relative values they place on benefits and adverse effects. Mechanistic phenotyping through careful personalised evaluation would define the mechanisms driving pain and dementia behaviours in an individual, enabling the formulation of a personalised intervention strategy. Central pain processing mechanisms are particularly likely to be important in people with pain and dementia, and interventions to accommodate and address these may be particularly helpful, not only to relieve pain but also the symptoms of dementia.

A Qualitative Study on the Experiences of Therapists Delivering the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Intervention During the COVID-19 Pandemic.

BACKGROUND: The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) intervention is a programme of physical activity and exercise designed to maintain participation in activities of daily living, mobility, and quality of life for people living with dementia. During the COVID-19 pandemic first national lockdown in England, the PrAISED physiotherapists, occupational therapists, and rehabilitation support workers adapted to delivering the intervention remotely via telephone or video conferencing. OBJECTIVE: The aim of this study was to explore therapists' experience of delivering the PrAISED intervention during the COVID-19 pandemic and derive implications for clinical practice. METHODS: Qualitative semi-structured interviews were conducted with 16 therapists using purposive sampling. Thematic analysis was used to analyze the transcripts. RESULTS: Therapists reported a change in the relationship between themselves, the person with dementia and the caregiver, with an increased reliance on the caregiver and a loss of autonomy for the person living with dementia. There was concern that this would increase the burden on the caregiver. The therapists reported using creativity to adapt to different modes of delivery. They felt their sessions were mostly focused on providing social and emotional support, and that assessing, progressing, and tailoring the intervention was difficult. CONCLUSION: It is possible to deliver some elements of a physical intervention using remote delivery, but a dual modal approach including remote and face-to-face delivery would optimize treatment efficacy. Educational support would be required to enable people living with dementia and their caregivers to overcome barriers relating to digital literacy.

Association of pain and risk of falls in community-dwelling adults: a prospective study in the Survey of Health, Ageing and Retirement in Europe (SHARE).

PURPOSE: To investigate the longitudinal associations between pain and falls risks in adults. METHODS: Prospective cohort study on data from 40,636 community-dwelling adults ≥ 50 years assessed in Wave 5 and 6 in the Survey of Health, Ageing and Retirement in Europe (SHARE). Socio-demographic and clinical information was collected at baseline (Wave 5). At 2-year follow-up (Wave 6), falls in the previous 6 months were recorded. The longitudinal associations between pain intensity, number of pain sites and pain in specific anatomic sites, respectively, and falls risk were analysed by binary logistic regression models; odds ratios (95% confidence intervals) were calculated. All analyses were adjusted for socio-demographic and clinical factors and stratified by sex. RESULTS: Mean age was 65.8 years (standard deviation 9.3; range 50-103); 22,486 (55.3%) participants were women. At follow-up, 2805 (6.9%) participants reported fall(s) in the previous 6 months. After adjustment, participants with moderate and severe pain at baseline had an increased falls risk at follow-up of 1.35 (1.21-1.51) and 1.52 (1.31-1.75), respectively, compared to those without pain (both p < 0.001); mild pain was not associated with falls risk. Associations between pain intensity and falls risk were greater at younger age (p for interaction < 0.001). Among participants with pain, pain in ≥ 2 sites or all over (multisite pain) was associated with an increased falls risk of 1.29 (1.14-1.45) compared to pain in one site (p < 0.001). CONCLUSIONS: Moderate, severe and multisite pain were associated with an increased risk of subsequent falls in adults.

Impact of COVID-19 lockdown on physical exercise among participants receiving the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) intervention: a repeated measure study.

BACKGROUND: The potential decrease in daily physical activity associated with the COVID-19 pandemic lockdowns may have a negative impact on people living with dementia. Given the limited literature around the effects of home confinement in people living with dementia, this study investigated changes in physical exercise levels of participants in the intervention arm of the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomised Controlled Trial during the first COVID-19 national lockdown. It hypothesised that participants would maintain physical exercise levels. METHODS: A repeated measure (three time points) study involving 30 participants (mean age = 78.0 years, 15 male and 15 female, 22 (73.0%) living with their primary caregiver), from four regions in England receiving the PrAISED intervention. PrAISED is an individually tailored intervention of physical exercises and functional activities. Trained therapists deliver therapy sessions over a period of 52 weeks. Study participants received therapy sessions via phone or video calling during the COVID-19 lockdown. This study investigated self-reported minutes of physical exercise recorded on study calendars for the months of February (i.e., baseline - pre-lockdown), May (i.e., T1 - during lockdown), and August (i.e., T2-post-lockdown) 2020. RESULTS: Participants reported a statistically significant increase in activity levels between February and May (Wilcoxon Z = -2.013, p = 0.044) and a statistically significant decrease between May and August (Wilcoxon Z = -2.726, p = 0.004). No significant difference was found in the physical activity levels from pre- to post-lockdown (Wilcoxon Z = 0.485, p = 0.620). CONCLUSION: Despite concerns that the restrictions associated with the COVID-19 pandemic might lead to reductions in physical exercise, participants in receipt of the PrAISED intervention increased their amount of physical exercise during lockdown. Our findings support the potential of remote support for people living with dementia to help them maintain physical exercise levels in circumstances where face-to-face service provision is not possible. TRIAL REGISTRATION: The PrAISED trial and process evaluation have received ethical approval number 18/YH/0059 from the Bradford/Leeds Ethics Committee. The Clinical Trial Identifier for PrAISED is: ISRCTN15320670 ( https://doi.org/10.1186/ISRCTN15320670 ). Registration was made on 04/09/2018.

Equal but different! Improving care for older LGBT+ adults.

International human rights movements have improved the visibility and equality of lesbian, gay, bisexual and transgender+ (LGBT+) communities and their members. Health outcomes for LGBT+ people remain, however, worse than for their non-LGBT+ peers. Older LGBT+ people have experienced fewer positive changes, in part due to their lived experience of discrimination and their ongoing, unintentional invisibility in medical and social care. This article highlights the impacts of societal structure, health and social care on the lives of older LGBT+ people including physical and mental health, End of Life, Dementia, Housing and Care Settings, and a focus on the experiences of trans-people. We look at the existing improvements developed by LGBT+ communities (and their allies) and propose refreshing Person-Centred Care to improve inclusivity. Finally, we provide a framework for looking at the areas in which service challenges arise and suggest ways to address these to make health and social care services more ready to meet the needs of older LGBT+ people.

A systematic literature review and meta-analysis on digital health interventions for people living with dementia and Mild Cognitive Impairment.

OBJECTIVES: Digital health interventions enable services to support people living with dementia and Mild Cognitive Impairment (MCI) remotely. This literature review gathers evidence on the effectiveness of digital health interventions on physical, cognitive, behavioural and psychological outcomes, and Activities of Daily Living in people living with dementia and MCI. METHODS/DESIGN: Searches, using nine databases, were run in November 2021. Two authors carried out study selection/appraisal using the Critical Appraisal Skills Programme checklist. Study characteristics were extracted through the Cochrane handbook for systematic reviews of interventions data extraction form. Data on digital health interventions were extracted through the template for intervention description and replication (TIDieR) checklist and guide. Intervention effectiveness was determined through effect sizes. Meta-analyses were performed to pool data on intervention effectiveness. RESULTS: Twenty studies were included in the review, with a diverse range of interventions, modes of delivery, activities, duration, length, frequency, and intensity. Compared to controls, the interventions produced a moderate effect on cognitive abilities (SMD = 0.36; 95% CI = -0.03 to 0.76; I2  = 61%), and a negative moderate effect on basic ADLs (SMD = -0.40; 95% CI = -0.86 to 0.05; I2  = 69%). Stepping exergames generated the largest effect sizes on physical and cognitive abilities. Supervised training produced larger effect sizes than unsupervised interventions. CONCLUSION: Supervised intervention delivery is linked to greatest benefits. A mix of remote and face-to-face delivery could maximise benefits and optimise costs. Accessibility, acceptability and sustainability of digital interventions for end-users must be pre-requisites for the development of future successful services.

Are dementia services and support organisations meeting the needs of Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers of LGBT people living with dementia? A scoping review of the literature.

OBJECTIVES: More than 60% of people with dementia live at home, where assistance is usually provided by informal caregivers. Research on the experiences of the Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers is limited. This scoping review of the literature synthesizes international evidence on support provision for the population of LGBT caregivers. METHODS: Eight electronic databases and Google Scholar were searched using terms including 'Dementia', 'LGBT' and 'Caregiver' for all types of articles, including empirical studies, grey literature and sources from charity/third sector/lobbying organisations. Article selection was performed by two raters. Data were analysed through deductive thematic analysis, and three themes were established a priori: Distinct experiences of LGBT caregivers; current barriers to support; strategies to overcome the current challenges. RESULTS: Twenty articles were included. Distinct experiences of LGBT caregivers included a loss of LGBT identity, the impact of historical events, families of choice, and disclosing LGBT identities. Current barriers to support included poor representation of LGBT caregivers in support services, negative attitudes of staff and reluctance of caregivers to seek support. Strategies to overcome the current challenges included staff awareness training and kite-marking inclusion. CONCLUSION: Limited cultural competency of staff and a subsequent reluctance to seek help have an impact on use of support services among LGBT caregivers. Implications for practice include the development of cost-effective, feasible, and acceptable inclusiveness training for services. Implications for policy include implementation in organisations of top-down agendas supporting staff to understand sexuality and non-heteronormative relationships in older age.

Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation.

BACKGROUND: Restrictions introduced in response to the COVID-19 pandemic led to increased risk of deconditioning in the general population. No empirical evidence of this effect however has been gathered in people living with dementia. This study aims to identify the causes and effects of COVID-19-related deconditioning in people living with dementia. METHODS: This is a longitudinal phenomenological qualitative study. Participants living with dementia, their caregivers and therapists involved in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation during the COVID-19 pandemic were qualitatively interviewed at two time points: the baseline 2 months after the national lockdown was imposed in England (i.e., May 2020), the follow up 2 months after the first set (i.e. July 2020). The data were analysed through deductive thematic analysis. RESULTS: Twenty-four participants living with dementia, 19 caregivers and 15 therapists took part in the study. Two themes were identified: Causes of deconditioning in people living with dementia during the COVID-19 pandemic and effects of deconditioning in people living with dementia during the COVID-19 pandemic. A self-reinforcing pattern was common, whereby lockdown made the person apathetic, demotivated, socially disengaged, and frailer. This reduced activity levels, which in turn reinforced the effects of deconditioning over time. Without external supporters, most participants lacked the motivation / cognitive abilities to keep active. Provided the proper infrastructure and support, some participants could use tele-rehabilitation to combat deconditioning. CONCLUSION: The added risks and effects of deconditioning on people with dementia require considerable efforts from policy makers and clinicians to ensure that they initiate and maintain physical activity in prolonged periods of social distancing. Delivering rehabilitation in the same way as before the pandemic might not be feasible or sustainable and innovative approaches must be found. Digital support for this population has shown promising results but remains a challenge. TRIAL REGISTRATION: The PrAISED trial and process evaluation have received ethical approval number 18/YH/0059 from the Bradford/Leeds Ethics Committee. The ISRCTN Registration Number for PrAISED is  15320670 .

Promoting physical activity in primary care: a systematic review and meta-analysis.

BACKGROUND: Promoting physical activity is an important part of patient care in primary care and has been investigated in many studies with a wide range of intervention characteristics, often including external support. It is unclear, however, if promoting physical activity is effective. AIM: To investigate the effectiveness of behaviour change interventions to promote physical activity in primary care. DESIGN AND SETTING: This is a systematic review and meta-analysis to evaluate physical activity promotion in a primary care setting. METHOD: EMBASE, MEDLINE, PsycInfo, and the Joanna Briggs Institute Database were searched for 'physical activity', 'interview', 'motivation', 'primary care', and equivalent words to identify randomised controlled trials with physical activity as the outcome at patient level. RESULTS: The review identified 25 eligible studies. The quality appraisal showed that most studies reported insufficient details regarding randomisation, group allocation, blinding, and fidelity of intervention delivery. The included studies reported a wide range of interventions with varying numbers of follow-up visits or phone calls. The overall effect size for interventions with a 6-month follow-up interval was 0.04 (95% confidence interval [CI] = -0.06 to 0.14), and for interventions with a 12-month follow-up interval it was 0.20 (95% CI = 0.04 to 0.36). Only one intervention based on three motivational interviewing sessions achieved a moderate effect. CONCLUSION: Counselling to promote physical activity in primary care has a limited effect on patients' behaviour and it might not, on its own, be enough to change physical activity behaviour.

Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health.

BACKGROUND: Caring for someone with dementia is associated with negative and positive experiences. There is little evidence based on large datasets. OBJECTIVE: To present data around the experience of caring for someone with dementia, to identify support (emotional and practical) needs, and inform future service provision. METHODS: A mixed-methods study embedded in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomized Controlled Trial. We administered questionnaires on strain, quality of life (QoL), and perceived health to 301 caregivers and assessment of cognitive performance, depression, anxiety, and disability in activities of daily living to 301 participants with dementia. Data were analyzed through descriptive and modelling statistics. A subsample of 20 patient-caregiver dyads were qualitatively interviewed. Data around caregivers' experience of providing care were extrapolated and analyzed through inductive thematic analysis. RESULTS: There were significant negative associations between caregiver strain and QoL (p < 0.01) and between caregiver age and QoL (p < 0.01), and significant positive associations between caregiver strain and disability (p < 0.01), cognitive impairment (p < 0.01), depression (p < 0.05), and anxiety of the person with dementia (p < 0.05). Older caregivers reported a lack of support, reinforced by their reluctance to seek help. All caregivers reported contradictory emotions associated with caring and accumulation of strain over time. CONCLUSION: While there is recognition that it is essential to support caregivers, dedicated intervention programs, and support strategies to respond to the needs of older caregivers are still needed.

Tele-Rehabilitation for People with Dementia during the COVID-19 Pandemic: A Case-Study from England.

Introduction: The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) is delivering an exercise programme for people with dementia. The Lincolnshire partnership National Health Service (NHS) foundation Trust successfully delivered PrAISED through a video-calling platform during the Coronavirus Disease 2019 (COVID-19) pandemic. METHODS: This qualitative case-study aimed to identify participants that video delivery worked for, to highlight its benefits and its challenges. Interviews were conducted between May and August 2020 with five participants with dementia and their caregivers (n = 10), as well as five therapists from the Lincolnshire partnership NHS foundation Trust. The interviews were analysed through thematic analysis. RESULTS: Video delivery worked best when participants had a supporting caregiver and when therapists showed enthusiasm and had an established rapport with the client. Benefits included time efficiency of sessions, enhancing participants' motivation, caregivers' dementia awareness, and therapists' creativity. Limitations included users' poor IT skills and resources. DISCUSSION: The COVID-19 pandemic required innovative ways of delivering rehabilitation. This study supports that people with dementia can use tele-rehabilitation, but success is reliant on having a caregiver and an enthusiastic and known therapist.

Exercise interventions for older adults: A systematic review of meta-analyses.

BACKGROUND: The evidence concerning which physical exercise characteristics are most effective for older adults is fragmented. We aimed to characterize the extent of this diversity and inconsistency and identify future directions for research by undertaking a systematic review of meta-analyses of exercise interventions in older adults. METHODS: We searched the Cochrane Database of Systematic Reviews, PsycInfo, MEDLINE, Embase, CINAHL, AMED, SPORTDiscus, and Web of Science for articles that met the following criteria: (1) meta-analyses that synthesized measures of improvement (e.g., effect sizes) on any outcome identified in studies of exercise interventions; (2) participants in the studies meta-analyzed were adults aged 65+ or had a mean age of 70+; (3) meta-analyses that included studies of any type of exercise, including its duration, frequency, intensity, and mode of delivery; (4) interventions that included multiple components (e.g., exercise and cognitive stimulation), with effect sizes that were computed separately for the exercise component; and (5) meta-analyses that were published in any year or language. The characteristics of the reviews, of the interventions, and of the parameters improved through exercise were reported through narrative synthesis. Identification of the interventions linked to the largest improvements was carried out by identifying the highest values for improvement recorded across the reviews. The study included 56 meta-analyses that were heterogeneous in relation to population, sample size, settings, outcomes, and intervention characteristics. RESULTS: The largest effect sizes for improvement were found for resistance training, meditative movement interventions, and exercise-based active videogames. CONCLUSION: The review identified important gaps in research, including a lack of studies investigating the benefits of group interventions, the characteristics of professionals delivering the interventions associated with better outcomes, and the impact of motivational strategies and of significant others (e.g., carers) on intervention delivery and outcomes.

Protocol for the process evaluation of the Promoting Activity, Independence and Stability in Early Dementia (PrAISED), following changes required by the COVID-19 pandemic.

INTRODUCTION: The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) randomised controlled trial (RCT) is evaluating a home-based, face-to-face, individually tailored, activity and exercise programme for people living with dementia. Social distancing requirements following the COVID-19 pandemic necessitated rapid changes to intervention delivery. METHODS AND ANALYSIS: A mixed-methods process evaluation will investigate how the changes were implemented and the impact that these have on participants' experience. An implementation study will investigate how the intervention was delivered during the pandemic. A study on the mechanisms of impact and context will investigate how these changes were experienced by the PrAISED participants, their carers and the therapists delivering the intervention. The study will commence in May 2020. ETHICS AND DISSEMINATION: The PrAISED RCT and process evaluation have received ethical approval number 18/YH/0059. The PrAISED process evaluation will enable us to understand how distancing and isolation affected participants, their activity and exercise routines and whether the therapy programme could be continued with remote support. This will be valuable both in explaining trial results and also contribute to understanding and designing new ways of delivering home-based services and rehabilitation interventions for people with dementia and their carers. TRIAL REGISTRATION NUMBER: ISRCTN15320670; Pre-results.

Adherence to exercise interventions in older people with mild cognitive impairment and dementia: A systematic review and meta-analysis.

Adherence to physical exercise is associated with multiple benefits in people with mild cognitive impairment (MCI) and dementia. Given the gap in research, this systematic literature review aimed to determine in the context of exercise intervention studies for people with MCI and dementia: 1. How adherence is defined, monitored and recorded; 2. Adherence rates; 3. Attrition, compliance and adverse events and 4. Intervention characteristics associated with adherence. Embase, Medline, PsychInfo, SPORTDiscus, AMED, CINAHL and the International Bibliography of Social Sciences were searched in November 2018. The data were analyzed through descriptive and correlation/inferential statistics. Forty-one studies were included, 34 involving participants with dementia (n = 2149) and seven participants with MCI (n = 970). Half of the studies operationally defined adherence. Mean adherence rate was 70% [CI, 69-73%]. Adherence was significantly associated with endurance/resistance training, and interventions not including walking. The review found a lack of consistency around reporting of adherence and of key variables mediating adherence, including compliance, attrition and adverse events. Further research using more reliable measures is needed to confirm whether a correlation exists between length of interventions and adherence in participants with MCI and dementia and to identify the factors or strategies that mediate adherence in this population. Relevant implications for practice include a consideration in the development of new interventions of elements associated with higher adherence in this review, such as endurance/resistance training, and the provision of exercise in group formats.

Involving the Person with Dementia in Crisis Planning: Focus Groups with Crisis Intervention Teams.

Dementia leads to progressive critical situations that can escalate to a crisis episode if not adequately managed. A crisis may also resolve spontaneously, or not resolve after receiving professional support. Because of the intensity of the crisis, the extent to which the person engages in decision making for their own care is often decreased. In UK mental health services, 'crisis teams' work to avert the breakdown of support arrangements and to avoid admissions to hospital or long-term care where possible. This study aimed to explore the views of crisis teams about promoting the involvement of the person with dementia in decision-making at all points in the care pathway, here defined as co-production. The staff of crisis teams from three NHS Trusts in the UK were interviewed through focus groups. Data were analysed using framework analysis. Three focus groups were run with 22 staff members. Data clustered around strategies used to promote the active involvement of the person with dementia, and the challenges experienced when delivering the care. Staff members reported that achieving a therapeutic relationship was fundamental to successful co-production. Miscommunication and/or lack of proper contact between the team and the individuals and carers receiving support adversely affected the quality of care. Making service users aware of the support provided by crisis teams before they need this may help promote a positive therapeutic relationship and effective care management.