Describing and assessing behavioural symptoms in amyotrophic lateral sclerosis with and without frontotemporal dementia: a scoping review.

PURPOSE OF REVIEW: Alongside motor and cognitive symptoms, amyotrophic lateral sclerosis (ALS) and ALS with frontotemporal dementia (ALSFTD) present with behavioural symptoms, which can be challenging for all affected by the disease. A scoping review of studies published between 2011 and 2024 was conducted to present the breadth of behavioural symptoms in ALS and ALSFTD, explore how they are described and assessed, and identify patterns in the literature. FINDINGS: This scoping review identified 3939 articles, with 111/3939 meeting eligibility criteria. Most studies were from Australia (23.22%), Italy (16.94%) and the UK (14.29%); 75.67% were cross-sectional. Sample size ranged from 1 to 1013, as case studies were included. Overall mean age (100/111 studies) was 61.32 (SD = 4.15). Proportion of male patients (reported 102/111 studies) was 61.49%; mean disease duration (reported in 86/111 records) was 32.63 months (SD = 24.72). Papers described a broad range of behavioural symptoms (465 examples), which were thematically collated into seven categories: disinhibition (27.74%), apathy (25.16%), perseverative/compulsive behaviours (17.42%), hyperorality (10.53%), loss of sympathy or empathy (8.6%), psychotic symptoms (7.74%), and loss of insight about disease and changes (2.8%). Most studies (78.37%) used validated behavioural assessments that elicited carer's perspectives. SUMMARY: Despite extensive evidence of behavioural symptoms in ALS, implementation of assessments and management of behavioural symptoms in clinical care remain limited. Clinicians must assess behavioural symptoms, as these can negatively affect disease prognosis, patient treatment engagement and increase family distress. Measures capturing carers' perspectives through interviews are ideal as they can reveal anosognosia, lack of sympathy and lack of empathy.

Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.

OBJECTIVE: To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease. METHODS: Seventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (Relationship Closeness Scale), familism levels (Familism Scale), and reported hours of care provided. Multiple linear regression analyses were conducted to explore factors impacting carer AG. RESULTS: AG total scores showed that 50.7% of carers were experiencing common grieving reactions, 22.6% presented intense grieving emotions, and 26.7% presented low grieving responses.Disease severity (regression coefficient, ß = -0.31, p = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (ß = -0.34, p = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, R2=0.38, p < 0.001).Regarding AG subscales, Personal Sacrifice Burden (R2=0.43, p < 0.001) was predicted by disease severity (ß = -0.39, p < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (ß = -0.27, p = 0.03, 95%CI -0.49 to -0.03; R2 = 0.21, p = 0.01) and Worry and Felt Isolation (ß = -0.42, p < 0.001, 95%CI -0.63 to -0.20; R2=0.33, p < 0.001). CONCLUSION: This study suggests that disease-related factors may be the strongest predictors of carer AG. Interventions addressing carers' understanding and management of MND symptoms seem crucial to support their experiences of loss and their acceptance of MND. Evidence-based support for carers in MND services is required.

Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers.

BACKGROUND AND OBJECTIVES: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. RESEARCH DESIGN AND METHODS: This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. RESULTS: Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. DISCUSSION AND IMPLICATIONS: Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review.

The purpose of this mixed methods systematic review was to identify factors associated with anticipatory grief, post-death grief, and prolonged grief in informal carers of people living with Motor Neuron Disease (MND) to inform future research and practice. Six electronic databases were searched and two quantitative and eight qualitative studies were identified. Five overarching themes were generated through thematic synthesis. The findings suggest that there are factors that may affect different grieving processes. It might be particularly important to target some factors prior and after the death of the person living with MND such as the knowledge about the progression of the disease, changes in relationships, anxiety and depressive symptoms of carers, and planning for death of the care recipient. Factors that may affect all three grieving processes were also identified such as negative experiences of caregiving, experiences of losses, end of life and psychological support, and emotional avoidance coping.

Is Carer Management Style Associated with Longitudinal Functional Decline in Dementia?

BACKGROUND: Various intrinsic (related to dementia) and extrinsic (not related to dementia) factors have been suggested to contribute separately to disability in people living with dementia (PLwD). OBJECTIVE: To investigate if the combination of specific intrinsic and extrinsic factors at baseline is associated with longitudinal declines in activities of daily living (ADL) performance of PLwD at 12-month follow-up. METHODS: 141 community-dwelling PLwD-carer dyads were assessed on their global cognition (ACE-III), apathy (CBI-R), carer management styles (DMSS), medical comorbidities (CCI), and ADL performance (DAD) at baseline, and for a subset of participants (n = 53), at 12-month follow-up. Multiple linear regression models were run to assess: 1) the relationships between PLwD's DAD scores and the remaining variables at baseline and 2) whether these variables' scores at baseline were associated with longitudinal change in the PLwD's DAD scores. RESULTS: At baseline, having lower ACE-III (ß= 0.354, p < 0.001), higher CBI-R (ß= -0.284, p < 0.001), higher DMSS criticism (ß= -0.367, p = 0.013), lower DMSS encouragement (ß= 0.370, p = 0.014), and higher CCI scores (ß= -2.475, p = 0.023) were significantly associated with having lower DAD scores. The PLwD's DAD scores significantly declined from baseline to follow-up (p < 0.001, d = 1.15), however this decline was not associated with the baseline scores of any of the independent variables. Instead, it was associated with declines in the PLwD's ACE-III scores from baseline to follow-up (ß= 1.021, p = 0.001). CONCLUSIONS: In our limited sample, cognitive changes seem to be the main factor underlying longitudinal decline in ADL performance for PLwD. Carer management styles appear associated with current ADL performance but not with longitudinal ADL decline.

Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease.

BACKGROUND: Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers' emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. OBJECTIVE: To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. METHODS: We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. RESULTS: Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. SIGNIFICANCE OF RESULTS: Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS.

AIMS: The aim of this study was to explore the experiences, values and preferences of people living with relapsing multiple sclerosis (PLwRMS) focusing on their treatments and what drives their treatment preferences. METHODS: In-depth, semi-structured, qualitative telephone interviews were conducted using a purposive sampling approach with 72 PLwRMS and 12 health care professionals (HCPs, MS specialist neurologists and nurses) from the United Kingdom, United States, Australia and Canada. Concept elicitation questioning was used to elicit PLwRMS' attitudes, beliefs and preferences towards features of disease-modifying treatments. Interviews with HCPs were conducted to inform on HCPs' experiences of treating PLwRMS. Responses were audio recorded and transcribed verbatim and then subjected to thematic analysis. RESULTS: Participants discussed numerous concepts that were important to them when making treatment decisions. Levels of importance participants placed on each concept, as well as reasons underpinning importance, varied substantially. The concepts with the greatest variability in terms of how much PLwRMS found them to be important in their decision-making process were mode of administration, speed of treatment effect, impact on reproduction and parenthood, impact on work and social life, patient engagement in decision making, and cost of treatment to the participant. Findings also demonstrated high variability in what participants described as their ideal treatment and the most important features a treatment should have. HCP findings provided clinical context for the treatment decision-making process and supported patient findings. CONCLUSIONS: Building upon previous stated preference research, this study highlighted the importance of qualitative research in understanding what drives patient preferences. Characterized by the heterogeneity of the RMS patient experience, findings indicate the nature of treatment decisions in RMS to be highly individualized, and the subjective relative importance placed on different treatment factors by PLwRMS to vary. Such qualitative patient preference evidence could offer valuable and supplementary insights, alongside quantitative data, to inform decision making related to RMS treatment.

Implementing an intervention to enhance care delivery and consistency for people with hip fracture and cognitive impairment in acute hospital wards: a mixed methods process evaluation of a randomised controlled feasibility trial (PERFECTED).

OBJECTIVES: To determine how, and under what circumstances, the PERFECT-ER intervention was implemented in five acute hospital wards and impacted on staff practices and perceptions. DESIGN: Mixed methods process evaluation (undertaken between 2016 and 2018). SETTING: Five acute hospital wards across three different UK regions. PARTICIPANTS: Patients (n=3) admitted to acute wards with hip fracture and cognitive impairment, their relatives (n=29) and hospital staff (n=63). INTERVENTIONS: PERFECT-ER, a multicomponent intervention designed to enhance the recovery of patients with hip fracture and cognitive impairment was implemented for 18 months. PERFECT-ER was implemented at ward level ensuring that multiple new and existing practices were undertaken consistently, on the assumption that collectively, small individual advances would improve care delivery for patients. PRIMARY AND SECONDARY OUTCOME MEASURES: Implementation of the PERFECT-ER intervention examined through regular intervention scores, service improvement staff reports and action plans, and semi-structured interviews and focus groups. RESULTS: The process evaluation identified points of implementation vulnerability and strength. All wards implemented some elements of PERFECT-ER. Implementation was fragile when ward pressures were high and when ward staff perceived the relative priority of intervention practices to be low. Adaptations to the implementation process may have reduced whole-ward staff engagement with implementation. However, strategical enlistment of senior ward influencers (such as ward managers, orthogeriatricians) combined with service improvement lead in-ward peer pressure tactics facilitated implementation processes. CONCLUSIONS: Our study suggests that implementation was expediated when senior staff were on board as opinion leaders and formally appointed internal implementation leaders exerted their power. Within hierarchical settings such as acute wards, key individuals appeared to influence implementation through endorsement and sometimes enforcement. This indicates that whole-ward interventions may not always require cognitive engagement from all ward staff to implement changes. Future ward-level implementation studies could consider how best to engage staff and most importantly, which staff to best target. TRIAL REGISTRATION NUMBER: ISRCTN99336264.

Implementing PERFECT-ER with Plan-Do-Study-Act on acute orthopaedic hospital wards: Building knowledge from an implementation study using Normalization Process Theory.

BACKGROUND: Delivering care to growing numbers of patients with increasingly 'complex' needs is currently compromised by a system designed to treat patients within organizational clinical specialties, making this difficult to reconfigure to fit care to needs. Problematic experiences of people with cognitive impairment(s) admitted to hospitals with a hip fracture, exemplify the complex challenges that result if their care is not tailored. This study explored whether a flexible, multicomponent intervention, adapting services to the needs of this patient group, could be implemented in acute hospital settings. METHODS: We used action research with case study design to introduce the intervention using a Plan-Do-Study-Act (PDSA) model to three different hospital sites (cases) across England. The qualitative data for this paper was researcher-generated (notes from observations and teleconference meetings) and change agent-generated (action plans and weekly reflective reports of change agents' activities). Normalization Process Theory (NPT) was used to analyze and explain the work of interacting actors in implementing and then normalizing (embedding) the intervention across contexts and times. Data analysis was abductive, generating inductive codes then identified with NPT constructs. Across the three cases, change agents had to work through numerous implementation challenges: needing to make sense of the intervention package, the PDSA model as implementation method, and their own role as change agents and to orientate these within their action context (coherence). They had to work to encourage colleagues to invest in these changes (cognitive participation) and find ways to implement the intervention by mobilising changes (collective action). Finally, they created strategies for clinical routines to continue to self-review, reconfiguring actions and future plans to enable the intervention to be sustained (reflexive monitoring). CONCLUSIONS: Successful implementation of the (PERFECT-ER) intervention requires change agents to recognize and engage with local values, and then to enable its fit with practice and wider contextual goals. A context of constant change fragments normalization. Thus, sustaining practice change over time is fragile and requires change agents to continue a recursive two-way sense-making process. This enables implementation and normalization to re-energize and overcome barriers to change.

Most Common Refusals of Personal Care in Advanced Dementia: Psychometric Properties of the Refusal of Care Informant Scale.

BACKGROUND AND OBJECTIVES: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviors such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusal of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviors. RESEARCH DESIGN AND METHODS: Data from 129 dyads were analyzed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability. RESULTS: Following Rasch analysis, the item "upset" was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach's alpha 0.88). Sixty-eight percent of people with dementia had refused care in the last month, with "verbally refused" the most common type of refusal behavior. People in the "very severe/profound" stage of dementia showed more refusal behaviors than those in the "severe" stage. DISCUSSION AND IMPLICATIONS: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia.

What are the factors associated with people with advanced dementia refusing assistance with personal care?

BACKGROUND: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia. METHODS: A cross-sectional study using informant-based measures. Participants were people with advanced dementia and their caregivers (family carers or care-home staff) (n = 260, 130 dyads) in the UK. Mixed effects linear models were used to examine the effects of neuropsychiatric behaviours, ability with activities of daily living, professional input, co-morbidities, psychotropic medications, environment modifications, and caregiver factors including type and training status on refusals of care. The Refusal of Care Informant Scale was used, range 1-13; higher scores indicate more refusal behaviours. RESULTS: Higher independence in activities of daily living was associated with less refusal behaviours (coefficient = -0.11, p < 0.001 [95% confidence interval -0.15, -0.07]). Higher agitation was associated with more refusal behaviours (0.11, p < 0.001 [0.06, 0.15]). No other statistically significant differences were found. There was no demonstrable evidence of differences in number of refusals of care between family and care-home caregivers or between dementia-trained or -untrained caregivers. CONCLUSIONS: Results suggest refusals of care have similar prevalence regardless of caregiver type (family or care home) or dementia training status, indicating that current dementia training has no impact on refusals of care or may not be implemented as intended. Improving independence in activities of daily living and reducing agitations may help prevent refusals of care. To establish causality, future research should consider embedding these factors into interventions targeting refusal of care.

How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?

BACKGROUND AND OBJECTIVES: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers' (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. RESEARCH DESIGN AND METHODS: One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. FINDINGS: Core to the caregiver experience of refusals of care was knowing the person. This underpinned five key themes identified as caregivers' strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplifying, leaving, or adapting care; (4) having confidence in care; and (5) seeking support from others when safety is at risk. DISCUSSION AND IMPLICATIONS: Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur.

Contributions of Caregiver Management Styles to the Discrepancy Between Reported and Observed Task Performance in People with Dementia.

BACKGROUND: The identification and understanding of the discrepancy between caregivers' reports of people with dementia's (PwD) performance of activities of daily living (ADLs) and observed performance, could clarify what kind of support a PwD effectively needs when completing tasks. Strategies used by caregivers have not been included in the investigation of this discrepancy. OBJECTIVE: To (1) investigate if caregivers' report of PwD's ADL performance are consistent with PwD's observed performance; (2) explore if caregiver management styles, depression, and anxiety, contribute to this discrepancy. METHODS: PwD (n = 64) were assessed with standardized performance-based (Assessment of Motor and Process Skills, AMPS) and informant-based (Disability Assessment for Dementia, DAD) ADL assessments. Caregivers completed depression (PHQ-9), anxiety (GAD-7), and dementia management style (DMSS: criticism, active-management, and encouragement) questionnaires. Cohen's kappa determined agreement/disagreement in ADL performance. To investigate the potential discrepancy between the DAD and AMPS, a continuous variable was generated: comparative ADL score. Multiple linear regression analysis explored whether caregivers' management styles, depression or anxiety could explain the ADL discrepancy. RESULTS: Poor level of agreement between observed and reported ADL performance [k = -0.025 (95% CI -0.123 -0.073)] was identified, with most caregivers underestimating ADL performance. The combined model explained 18% (R2 = 0.18, F (5,55) â€Š= 2.52, p≤0.05) of the variance of the comparative ADL score. Active-management (ß= -0.037, t (60) â€Š= -3.363, p = 0.001) and encouragement (ß= 0.025, t (60) â€Š= 2.018, p = 0.05) styles made the largest and statistically significant contribution to the model. CONCLUSION: Encouragement style could be advised for caregivers who underestimate ADL performance, while active management style for those who overestimate it. Findings have scope to increase caregivers' abilities to support PwD activity engagement in daily life.

Risks and risk mitigation in homecare for people with dementia-A two-sided matter: A systematic review.

Policy guidance promotes supporting people to live in their own homes for as long as possible with support from homecare services. People living with dementia who need such support can experience a range of physical and cognitive difficulties, which can increase the risks associated with homecare for this group. We aimed to examine risk and safety issues for people with dementia and their homecare workers and risk mitigation practices adopted by homecare workers to address identified risks. We searched MEDLINE, EMBASE, AMED, CINAHL, PsycINFO, ASSIA and Cochrane Central Register of Controlled Trials databases 5 March 2021. Included studies focussed on homecare for people with dementia and had a risk or safety feature reported. Risk of bias was assessed with the Joanna Briggs Institute Critical Appraisal tools. Two authors assessed articles for potential eligibility and quality. A narrative synthesis combines the findings. The search identified 2259 records; 27 articles, relating to 21 studies, met the eligibility criteria. The review identified first-order risks that homecare workers in the studies sought to address. Two types of risk mitigation actions were reported: harmful interventions and beneficial interventions. Actions adopted to reduce risks produced intended benefits but also unintended consequences, creating second-order risks to both clients with dementia and homecare workers, placing them at greater risk. Risk mitigation interventions should be person-centred, the responsibility of all relevant professions, and planned to minimise the creation of unintended risks.

PERFECTED enhanced recovery pathway (PERFECT-ER) versus standard acute hospital care for people after hip fracture surgery who have cognitive impairment: a feasibility cluster randomised controlled trial.

OBJECTIVES: Assess feasibility of a cluster randomised controlled trial (RCT) to measure clinical and cost-effectiveness of an enhanced recovery pathway for people with hip fracture and cognitive impairment (CI). DESIGN: Feasibility trial undertaken between 2016 and 2018. SETTING: Eleven acute hospitals from three UK regions. PARTICIPANTS: 284 participants (208 female:69 male). INCLUSION CRITERIA: aged >60 years, confirmed proximal hip fracture requiring surgical fixation and CI; preoperative AMTS ≤8 in England or a 4AT score ≥1 in Scotland; minimum of 5 days on study ward; a 'suitable informant' able to provide proxy measures, recruited within 7 days of hip fracture surgery. EXCLUSION CRITERIA: no hip surgery; not expected to survive beyond 4 weeks; already enrolled in a clinical trial. INTERVENTION: PERFECT-ER, an enhanced recovery pathway with 15 quality targets supported by a checklist and manual, a service improvement lead a process lead and implemented using a plan-do-study-act model. PRIMARY AND SECONDARY OUTCOME MEASURES: Feasibility outcomes: recruitment and attrition, intervention acceptability, completion of participant reported outcome measures, preliminary estimates of potential effectiveness using mortality, EQ-5D-5L, economic and clinical outcome scores. RESULTS: 282 participants were consented and recruited (132, intervention) from a target of 400. Mean recruitment rates were the same in intervention and control sites, (range: 1.2 and 2.7 participants/month). Retention was 230 (86%) at 1 month and 54%(144) at 6 months. At 3 months a relatively small effect (one quarter of an SD) was observed on health-related quality of life of the patient measured with EQ-5D-5L proxy in the intervention group. CONCLUSION: This trial design was feasible with modifications to recruitment. Mechanisms for delivering consistency in the PERFECT-ER intervention and participant retention need to be addressed. However, an RCT may be a suboptimal research design to evaluate this intervention due to the complexity of caring for people with CI after hip fracture. TRIAL REGISTRATION NUMBER: ISRCTN99336264.

Care Home and Home Care Staff's Learning during the COVID-19 Pandemic and Beliefs about Subsequent Changes in the Future: A Survey Study in Sweden, Italy, Germany and the United Kingdom.

The aim of this study was to compare perceptions of learning from the COVID-19 pandemic and beliefs in subsequent changes for the future, among care home and home care staff, in four European countries. A 29-item on-line questionnaire was designed in English and later translated into Swedish, Italian, and German on the impact of the pandemic on stress and anxiety. Anonymous data from care staff respondents was collected in four countries between 7 October 2020 and 17 December 2010: Sweden (n = 212), Italy (n = 103), Germany (n = 120), and the United Kingdom (n = 167). While care staff in all countries reported learning in multiple areas of care practice, Italy reported the highest levels of learning and the most agreement that changes will occur in the future due to the pandemic. Conversely, care staff in Germany reported low levels of learning and reported the least agreement for change in the future. While the pandemic has strained care home and home care staff practices, our study indicates that much learning of new skills and knowledge has taken place within the workforce. Our study has demonstrated the potential of cross-border collaborations and experiences for enhancing knowledge acquisition in relation to societal challenges and needs. The results could be built upon to improve future health care and care service practices.

Home-care workers' experiences of assisting people with dementia with their personal care: A qualitative interview study.

Home-care workers are increasingly caring for clients living with dementia. Workers usually have limited dementia training and are low paid and often lone working. Little is known about how home-care workers assist people with dementia with their personal care. We aimed to explore the experiences of home-care workers and the knowledge and skills they rely on when providing personal care to people with dementia. In 2020, we conducted 17 semi-structured, face-to-face interviews with home-care workers in the East of England. Analysis was inductive and thematic. Two key themes were present in the data: 'structural conditions' and 'clients' dementia-related characteristics'. For each of these, we examined the challenges faced by home-care workers and the strategies they used to manage these challenges. Challenges included time allocation for visits, completing care plan tasks, lone working, communication and understanding, refusals of care, and client behaviours. To mitigate these challenges, home-care workers utilised system support, time management, training and experience and enacted a caring relationship, thought about their approach, and used distraction and communication skills. Workers relied on skills such as, relationship building, team working, observation, communication, decision making and interpersonal sensitivity. They drew on knowledge about the person, the person's needs, their own abilities, company policies and procedures and their role and responsibilities as a home-care worker. Home-care workers had more scope to mitigate client-based challenges by adapting care within client interactions, than to manage structural challenges where there was a limit to what workers could do. Despite a commissioning focus on time- and task-based care, when caring for people with dementia, home-care workers used interaction as a way to bring the person along and complete care activities. Home-care services should acknowledge the importance of interactions with people with dementia within home care and support their workers to develop interpersonal sensitivity.

Organizational Support Experiences of Care Home and Home Care Staff in Sweden, Italy, Germany and the United Kingdom during the COVID-19 Pandemic.

The COVID-19 pandemic has affected care workers all over the globe, as older and more vulnerable people face a high risk of developing severe symptoms and dying from the virus infection. The aim of this study was to compare staff experiences of stress and anxiety as well as internal and external organizational support in Sweden, Italy, Germany, and the United Kingdom (UK) in order to determine how care staff were affected by the pandemic. A 29-item online questionnaire was used to collect data from care staff respondents: management (n = 136), nurses (n = 132), nursing assistants (n = 195), and other healthcare staff working in these organizations (n = 132). Stress and anxiety levels were highest in the UK and Germany, with Swedish staff showing the least stress. Internal and external support only partially explain the outcomes. Striking discrepancies between different staff groups' assessment of organizational support as well as a lack of staff voice in the UK and Germany could be key factors in understanding staff's stress levels during the pandemic. Structural, political, cultural, and economic factors play a significant role, not only factors within the care organization or in the immediate context.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom.

The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.

Challenges in dementia care: comparing key issues from Brazil and the United Kingdom / Desafios no cuidado a pessoas com demência: comparando questões-chave entre Brasil e Reino Unido

ABSTRACT. The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future. Four key issues were prioritised to identify challenges and generate possible solutions in Brazil and the United Kingdom: I) limitations of current health systems; II) continuous and long-term support for family carers (pre-diagnosis, mourning); III) support for people with advanced dementia and end-of-life care; IV) support for people with young-onset dementia. In both countries, carers feel left without post-diagnostic support; information on the progression of dementia is lacking and some people do not even have a specific diagnosis; encouraging and providing training for carers best manage some of the symptoms is imperative; preparation for end of life care and support carers after the death of their loved ones remains highly needed; strengthening services and qualification of health professionals, also creating protocols to guide dementia-related services represent a common challenge to overcome. The authors outline recommendations according to the issues identified to assist future formulation of adequate policies and services for people with dementia and carers.

RESUMO. O United Kingdom-Brazil Dementia Workshop aconteceu em julho de 2019 na cidade de Belo Horizonte, Minas Gerais, Brasil, com a presença de grupo interdisciplinar de profissionais de saúde e assistência do Reino Unido e Brasil, para abordar desafios no diagnóstico, percepção pública e cuidado à pessoa com demência. O objetivo do presente artigo foi apresentar os resultados encontrados em relação aos desafios no tratamento da demência, incluindo recomendações que possam potencialmente orientar autoridades locais e estaduais/municipais e serviços de atenção à pessoa com demência. Quatro questões-chave foram priorizadas para identificar desafios e gerar possíveis soluções no Brasil e no Reino Unido: I) limitações atuais dos sistemas de saúde; II) suporte contínuo e de longo prazo para cuidadores familiares (pré-diagnóstico, luto); III) apoio a pessoas com demência avançada e cuidados no fim de vida; IV) apoio a pessoas com demência precoce. Em ambos os países, cuidadores se percebem sem apoio pós-diagnóstico; faltam informações sobre a progressão da demência e algumas pessoas sequer têm diagnóstico específico; encorajar e providenciar treino para cuidadores melhor lidarem com sintomas é imperativo; preparação para cuidados no fim da vida e apoio aos cuidadores após morte de familiares permanecem necessários; fortalecer os serviços e qualificação de profissionais de saúde, além de elaborar protocolos para guiar serviços relacionados à demência, é desafio comum a ser superado. Os autores apresentam recomendações quanto às questões identificadas para auxiliar na futura formulação de políticas públicas e serviços para pessoas com demência e cuidadores.