What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK.

OBJECTIVES: The aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare professionals (HCPs). DESIGN, SETTING AND PARTICIPANTS: The semistructured interview study included HCP as well as AWID and carers supporting AWID living in the community. Community settings included sheltered living, supported living, AWID living at home with family carers or independently. The interview study explored the first draft of the ACTiON FALLS LD programme as well as the wider falls management for AWID. Interviews with AWID were developed to include a range of approaches (eg, case studies, pictures) to support inclusive participation. Individual interviews were digitally recorded and transcribed. Researcher notes were used during interviews with AWID. All data were analysed using the principles of framework analysis. RESULTS: 14 HCP, 8 carers and 13 AWID took part in the interview process. Five key themes were identified: programme components, programme design, programme approach, who would use the programme and programme delivery. CONCLUSIONS: The views of AWID, HCP and carers showed the need to consider the impact of risk perception, anxiety and fear of falling in the adaption of the ACTiON FALLS programme. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement for a proactive and educational tool by all.

Patients' experience with German primary care practices during Covid-19: an interview study.

BACKGROUND: Patient access to and communication with German primary care practices (PCPs) changed due to Covid-19. Patients had to comply with Covid-19 regulations, which included closed waiting rooms and appointment-based consultations. It is unclear how patients experienced these changes and how the pandemic impacted their primary care attendance. AIM: The aim of the study was to explore how patients, who frequently attended PCPs before the pandemic, perceived primary care during the initial phase of Covid-19 in Germany. DESIGN & SETTING: Between January and June 2021, we completed 17 semi-structured interviews. Participants included primary care patients from two regions in Germany who frequently attended their physician before the start of the pandemic. METHOD: Data were analysed using content analysis. RESULTS: Four interconnected themes emerged in the analysis: 'fear of COVID-19 infection', 'practice organisation', 'information about COVID-19', and 'telemedicine'. Participants were unconcerned about being infected in their practice and mostly agreed with COVID-19 regulations, although waiting outside for their appointment was uncomfortable for some. Participants consulted their primary care physician in relation to different vaccines but felt they were sufficiently informed regarding general information about COVID-19. Views on telemedicine, which was mostly understood as contact via telephone or video call, differed widely, with some participants being very accepting and interested, while others dismissed telemedicine categorically. CONCLUSION: Participants regarded the new COVID-19 regulations as sensible. Telemedicine using telephone or video call consultations should be further explored under the assumption that this would be acceptable for some but not all patients.

Recommendations for the primary prevention of atherosclerotic cardiovascular disease in primary care: study protocol for a systematic guideline review.

INTRODUCTION: Atherosclerotic cardiovascular disease (ASCVD) was the main cause of death in Germany in 2021, with major risk factors (ie, hypertension, diabetes, dyslipidaemia, obesity and certain lifestyle factors) being highly prevalent. Preventing ASCVD by assessment and modification of these risk factors is an important challenge for general practitioners. This study aims to systematically review and synthesise recent recommendations of national and international guidelines regarding the primary prevention of ASCVD in adults in primary care. METHODS AND ANALYSIS: We will conduct a systematic review of clinical practice guidelines (CPGs) to evaluate primary prevention strategies for ASCVD. CPGs will be retrieved from MEDLINE and the Turning Research Into Practice database, guideline-specific databases and websites of guidelines-producing societies, with searches limited to publications from 2016 onwards. We will include CPGs in English, Spanish, German or Dutch languages that provide evidence-based recommendations for ASCVD prevention. The study population will include adults without diagnosed ASCVD. Two independent reviewers will assess guideline eligibility and quality by means of the mini-checklist MiChe, and extract study characteristics and relevant recommendations for further consistency analysis. A third reviewer will resolve disagreements. Findings will be presented as a narrative synthesis and in tabular form. ETHICS AND DISSEMINATION: This review does not require ethical approval. Our systematic review will inform the CPG of the German College of General Practitioners and Family Physicians on the primary prevention of ASCVD. The review results will also be disseminated through publications in peer-reviewed journals and presentations at local, national and international conferences. PROSPERO REGISTRATION NUMBER: CRD42023394605.

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.

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.

Physical activity for chronic back pain: qualitative interview study with patients and GPs in German primary care.

BACKGROUND: Chronic back pain (CBP) is common among patients in primary care and is associated with significant personal and socioeconomic burden. Research has shown that physical activity (PA) is one of the most effective therapies to reduce pain; however, for GPs it remains challenging to advise and encourage individuals with CBP to exercise regularly. AIM: To provide insight into the views and experiences of PA in individuals with CBP, along with those of GPs, and to reveal the facilitators and barriers to engaging in, and maintaining, PA. DESIGN AND SETTING: Qualitative semi-structured interviews with individuals with CBP and GPs recruited via the local research practice network (Famprax) in Hessen, western-central Germany between June and December 2021. METHOD: Interviews were coded separately by consensus and analysed thematically. Findings of the two groups (GPs and patients with CBP) were compared and summarised. RESULTS: A total of 14 patients (n = 9 females and n = 5 males) and 12 GPs (n = 5 females and n = 7 males) were interviewed. Opinions and experiences of PA in individuals with CBP were similar both within and across the GP and patient groups. Interviewees expressed their views on internal and external barriers to PA, and provided strategies to address these barriers and concrete recommendations to increase PA. This study revealed a conflicting doctor-patient relationship ranging from paternalistic, to partnership based, to service provision, which could lead to negative perceptions on both sides, such as frustration and stigma. CONCLUSION: To the best of the authors' knowledge, this is the first qualitative study exploring opinion and experience of PA in individuals with CBP and GPs in parallel. This study reveals a complex doctor- patient relationship and provides an important insight to motivation for, and adherence to, PA in individuals with CBP.

Experiences and understanding of apathy in people with neurocognitive disorders and their carers: a qualitative interview study.

BACKGROUND: apathy, defined as reduced goal-directed activity, interests and emotion, is highly prevalent in neurocognitive disorders (NCDs). Apathy has important consequences for the individuals who experience it and their carers, yet the lived experiences of apathy in this population are not well understood. OBJECTIVE: to explore how people with NCDs and their carers understand and experience apathy. METHOD: in-depth semi-structured interviews were conducted in participants' homes. Sixteen people with NCDs (dementia or mild cognitive impairment) and 14 carers, living in four geographical areas of England, took part. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using reflexive thematic analysis. RESULTS: four themes were generated: 'Apathy is Poorly Understood'; 'Too much trouble: Mediating Effort and Outcome'; 'Preserving Identity in the Face of Loss of Capability and Autonomy' and 'Opportunity and Exclusion'. CONCLUSION: apathy is experienced as an understandable response to the everyday struggle people with NCDs face to preserve identity in the face of threats to capability and autonomy and is exacerbated by the lack of support and opportunities. Social and environmental modifications may help reduce apathy. In line with previous qualitative research, this challenges the dominant view of apathy as a neuropsychiatric symptom that excludes the social-environmental context.

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.

Exploring perceptions regarding family-based delirium management in the intensive care unit.

Background: Delirium is a common complication in patients treated in the intensive care unit (ICU). Family members can help alleviate patient anxiety and may be able to aid in the management of delirium. This study aimed to explore the perceptions of former ICU patients and their families together, regarding the involvement of family in delirium management. Method: Nine audio-recorded, semi-structured interviews took place with former ICU patients together with a family member. Participants were interviewed after their intensive care follow-up clinic appointment in an East Midlands hospital in England. Interviews were transcribed, coded and analysed using thematic analysis. Results: Three themes were identified: 'understanding about delirium'; 'influencers of delirium management: family and healthcare professionals' and 'family-based delirium care'. Participants expressed that family have a valuable role to play in the management of delirium in the ICU. However, education and guidance is needed to support the family in how delirium can be managed and the current treatment options available. It is important for ICU staff to gain an understanding of the patient's life and personality to personalise delirium management to the needs of the patient and their family. Conclusion: This study found that family presence and knowledge about the patient may be beneficial to delirium management in the ICU. Further research should investigate the effectiveness of the strategies and interventions to understand their influence on delirium management in ICU patients.

Rehabilitation care planning on a digital communication platform for patients with a work disability: protocol for the RehaPro-SERVE feasibility study.

BACKGROUND: Long-term disability to work is a risk factor for a permanent reduction in income. Rehabilitation care can support people to return to work. In Germany, rehabilitation care to return to work is mostly provided in specialised clinics. The aim of the Rehapro-SERVE study is to reduce work disability days by facilitating rehabilitation care planning using a digital communication platform. To investigate the feasibility, we will test the implementation of the digital platform and evaluate the study procedures. The Rehapro-SERVE study is funded by the German Federal Ministry of Labour and Social Affairs (BMAS) (grant number: 661R0053K1). METHOD: The feasibility study includes a two-armed unblinded block randomised controlled study (RCT) without follow-up assessments as well as an interview study. Participants for the RCT (n = 16) are primary care patients with a minimum of 4 weeks of absence from work due to musculoskeletal, oncological or psychological conditions and at high risk of early retirement. Eligibility criteria are age 40 to 60 years; minimum of 4 weeks continuous sick leave before recruitment due to musculoskeletal, mental health or oncological conditions; and being at high risk of early retirement. Patients will be recruited from 8 primary care practices in urban and rural areas in Hesse, Germany. Following baseline assessments, patients will be randomised to either digitalised care planning (treatment) or a control group. The digitalised care planning platform will include the patients' primary care physicians, jobcentres and public health physicians to decide on a tailored return-to-work programme. The collaboration will be supported by a case administrator and, if considered beneficial, a social worker for the patient. An interview study will evaluate the acceptability of the study procedures and the intervention. DISCUSSION: The use of a digital communication platform enables stakeholders to exchange information and discuss rehabilitation care planning in a timely fashion. The results of the feasibility study will lead to the adaptation of study procedures for the main study. The results will support the design and conduct of similar studies including digital applications in primary care or across different healthcare settings. TRIAL REGISTRATION: DRKS - German Clinical Trials Register, DRKS00024207 . Registered on 22 March 2021.

Apathy Measures in Older Adults and People with Dementia: A Systematic Review of Measurement Properties Using the COSMIN Methodology.

BACKGROUND: Apathy is highly prevalent in dementia and is also seen in mild cognitive impairment and the general population. Apathy contributes to failure to undertake daily activities and can lead to health problems or crises. It is therefore important to assess apathy. However, there is currently no gold standard measure of apathy. A comprehensive systematic review of the measurement properties of apathy scales is required. METHODS: A systematic review was registered with PROSPERO (ID: CRD42018094390). MEDLINE, Embase, PsycINFO, and CINAHL were searched for studies that aimed to develop or assess the validity or reliability of an apathy scale in participants over 65 years, living in the community. A systematic review was conducted in line with the COnsensus-based Standards for the selection of health Measurement INstruments procedure for reviewing patient-reported outcome measures. The studies' risk of bias was assessed, and all relevant measurement properties were assessed for quality. Results were pooled and rated using a modified Grading of Recommendations Assessment, Development, and Evaluation procedure. RESULTS: Fifty-seven publications regarding 18 measures and 39 variations met the eligibility criteria. The methodological quality of individual studies ranged from inadequate to very good and measurement properties ranged from insufficient to sufficient. Similarly, the overall evidence for measurement properties ranged from very low to high quality. The Apathy Evaluation Scale (AES) and Lille Apathy Rating Scale (LARS) had sufficient content validity, reliability, construct validity, and where applicable, structural validity and internal consistency. CONCLUSION: Numerous scales are available to assess apathy, with varying psychometric properties. The AES and LARS are recommended for measuring apathy in older adults and people living with dementia. The apathy dimension of the commonly used Neuropsychiatric Inventory should be limited to screening for apathy.

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.

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.

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.

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.

Measuring Physical Activity Levels in People With Mild Cognitive Impairment or Mild Dementia.

Measuring physical activity (PA) in people with mild cognitive impairment or dementia can be difficult. The aim was to investigate the validity and acceptability of three different PA measurement methods. The mixed-method analysis included 49 participants with mild cognitive impairment or dementia, who completed a daily calendar recording PA, the International Physical Activity Questionnaire, and the Longitudinal Aging Study Amsterdam PA Questionnaire, and those who wore a Misfit Shine accelerometer. The quantitative analysis showed equal completion rates for the International Physical Activity Questionnaire and the accelerometer but a lower completion rate for the calendar. Correlations between outcome measures were moderate or strong. The qualitative analysis indicated that all measures were acceptable, though some participants required help to complete the calendars or fasten the accelerometers. The study supported the validity of these methods for people with mild cognitive impairment and mild dementia. Using accelerometers and completing calendars might increase the motivation to be active for some people.

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.

The Impact of a Dementia-Friendly Exercise Class on People Living with Dementia: A Mixed-Methods Study.

Exercise has multiple benefits for people living with dementia. A programme of group exercise classes for people with dementia and their family carers has been established in a University sports centre. This study aims to explore the impact of this programme on participants with dementia and their carers. A mixed-methods design including a prospective, repeated measures cohort study followed by focus groups was employed. Physiological and cognitive outcome measures were repeated at baseline and three months in a cohort of people with dementia attending a group exercise class. Focus groups on the participants' experiences and their perceptions of the impact of the exercise class on their lives were then conducted. The results were analysed and mapped on a model, to illustrate the components that most likely promote participation. Sixteen participants (n = 8 with dementia, and n = 8 carers) were recruited, and completed both baseline and follow up assessments. Positive mean differences were found in physical activity (4.44), loneliness (1.75), mood (1.33) and cognition (1.13). Ten participants were included in the focus groups, which found that accessibility of the exercise venue, opportunities for socialisation and staff who were experienced working with people living with dementia were key to participants reporting benefits. The four key themes from the focus group data were synthesised to produce a model outlining the components that might generate a positive impact of the exercise classes and promote participation. Exercise classes for people with dementia can be delivered with success in novel environments such as University sports centres. There is some indication of improvement over a short period of time. The model derived from this study will inform strategies to promote attendance at dementia-friendly exercise classes.

Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia.

BACKGROUND: Patient and Public Involvement (PPI) in research ensures that publicly funded research reflects the priorities of the people who will be affected by its results. Co-research, a branch of PPI, is equal partnership between academic researchers and members of the public, who steer and conduct research together. OBJECTIVES: To propose a model for good practice in co-researching with carers of people with dementia, by reporting and synthesizing the personal reflections of the academic and lay researchers around the methodological issues, benefits, and challenges of co-research. DESIGN: An academic researcher and two lay researchers with lived experience of caring with someone with dementia collaborated in all stages of a qualitative research study, including development of the research protocol and topic guide, data collection, analysis and synthesis, and dissemination of findings. Throughout the study, the academic and lay researchers annotated reflections of their experience in personal diaries. Data from the diaries were synthesized and mapped out in a model for good practice in co-research. RESULTS: Co-research yielded benefits for all those involved and on research outputs. There were practicalities and challenges that required extra resources, in order to make the involvement of lay researchers meaningful and effective. DISCUSSION: The model for good practice illustrates overarching and stage-specific guidelines, which can inform researchers and members of the public wishing to undertake good practice in co-research.