Reducing refusals of care through improved personal care interactions between caregivers and people with dementia: protocol for a realist synthesis.

Introduction: People with dementia develop progressive difficulties conducting basic activities of daily living, often requiring considerable assistance from caregivers. Many people with dementia, particularly in the advanced stages, can refuse assistance with care leading to difficult interactions. The ways in which refusals of care can be best reduced are unknown.

'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.

Background: To explore carers' experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel internet-based psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers' views and acceptability of MiNDToolkit.

Methods: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n = 11).

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.

An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial.

Background: Evidence on management of behavioral symptoms in motor neuron disease (MND) is lacking. The MiNDToolkit, an online psychoeducational platform, supports carers dealing with behavioral symptoms (BehSymp). The study objectives were to ascertain recruitment and retention rates, carer and healthcare professional (HCP) use of the platform, and completion of online assessments, to inform a full-scale trial.

Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation.

Objective: MiNDToolkit is a novel psychoeducational intervention for carers to support management of behavioral symptoms in people living with motor neuron disease (PlwMND). Implementation of MiNDToolkit involves delivery of an online intervention to carers, which is reinforced by trained healthcare professionals (HCPs).

Methods: A mixed-methods process evaluation of the MiNDToolkit feasibility trial was conducted, focusing on reinforcement of the intervention by HCPs.

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.

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.

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.

Cut-off scores for mild and moderate dementia on the Addenbrooke's Cognitive Examination-III and the Mini-Addenbrooke's Cognitive Examination compared with the Mini-Mental State Examination.

Aims And Method: We aimed to establish cut-off scores to stage dementia on the Addenbrooke's Cognitive Examination-III (ACE-III) and the Mini-Addenbrooke's Cognitive Examination (M-ACE) compared with scores traditionally used with the Mini-Mental State Examination (MMSE). Our cross-sectional study recruited 80 patients and carers from secondary care services in the UK.

Results: A score ≤76 on the ACE-III and ≤19 on the M-ACE correlated well with MMSE cut-offs for mild dementia, with a good fit on the receiver operating characteristic analysis for both the ACE-III and M-ACE.

Suitability of memory aids and strategies for people with posterior cortical atrophy: protocol for a scoping review.

Background: Posterior cortical atrophy (PCA) is a neurodegenerative syndrome characterised by progressive visuospatial and visuoperceptual impairment. Recent research shows that memory impairment can also occur as an early symptom of the condition and that the impairment can be ameliorated by providing support in the memory recall phase, for example, by presenting a related cue. In Alzheimer's disease (AD), which is defined by an amnestic syndrome, memory aids and strategies have been used to help support everyday memory, which in turn can have a positive impact on patient and carer outcomes.

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.

Does Avoiding Distressing Thoughts and Feelings Influence the Relationship between Carer Subjective Burden and Anxiety Symptoms in Family Carers of People with Dementia?

Anxiety remains understudied in family carers of people with dementia. Understanding factors that moderate the relationship between stressors and anxiety symptoms in this population is critical to inform interventions. This study examined whether generic experiential avoidance (AAQ-II) and experiential avoidance specific to caregiving-related thoughts and feelings (EACQ) moderate the relationship between subjective burden (ZBI-12) and anxiety symptoms (GAD-7) in carers of 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.

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.

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.

Factors affecting the quality of life of family carers of people with dementia: the role of carer anxiety.

The role of anxiety on the quality of life of family carers of people with dementia is somewhat neglected in the carer literature. The current study aimed to investigate the impact of common risk factors (i.e.

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.

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.

Examining the Impact of Different Components of Sleep Quality on Anxiety Among Family Carers of People with Dementia.

Existing interventions for family carers of people with dementia tend to be less effective for anxiety than for depression. Therefore, identifying factors affecting carer anxiety is important to inform future interventions. This study conducted 2 multiple regression analyses using a sample of 91 family carers.

Examining the presence and nature of delusions in Alzheimer's disease and frontotemporal dementia syndromes.

Objectives: Abnormal beliefs and delusions have been reported in some people with dementia, however, the prevalence of delusions, and their neurocognitive basis has been underexplored. This study aimed to examine the presence, severity, content and neural correlates of delusions in a large, well-characterised cohort of dementia patients using a transdiagnostic, cross-sectional approach.

Methods: Four-hundred and eighty-seven people with dementia were recruited: 102 Alzheimer's disease, 136 behavioural-variant frontotemporal dementia, 154 primary progressive aphasia, 29 motor neurone disease, 46 corticobasal syndrome, 20 progressive supranuclear palsy.

What are the educational and support needs of family carers looking after someone in the early stages of Alzheimer's disease? A qualitative retrospective approach.

The current study aimed to identify the educational and support needs of family carers of people with dementia in the early stages of dementia by employing a qualitative approach with retrospective semi-structured interviews with family carers of people in the later stages of Alzheimer's disease (AD). Semi-structured individual interviews were conducted via telephone or Microsoft Teams video call. Purposive sampling was used to recruit twelve family carers of people with moderate or severe AD.

A New and Tidier Setting: How Does Environmental Clutter Affect People With Dementia's Ability to Perform Activities of Daily Living?

Background: The relationship between the physical environment and the person with dementia's (PwD) activities of daily living (ADLs) task performance is controversial. Although the general assumption is that this population benefits from their home environment when performing ADLs, very few experimental studies have been conducted to date.

Objectives: The aim was to investigate the influence of the environment (home vs.