Statistical analysis plan for HOMESIDE: a randomised controlled trial for home-based family caregiver-delivered music and reading interventions for people living with dementia.

BACKGROUND: Most people with dementia live in the community, not in residential care. Therefore, quality informal care for them is critical for managing behavioural and psychological symptoms of dementia (BPSD). Music therapy has been shown to reduce BPSD. However, no randomised controlled trial has examined the effects of music interventions delivered by caregivers in home settings. The HOME-based caregiver-delivered music intervention for people living with dementia (HOMESIDE) trial aims to evaluate the effectiveness of a 12-week music intervention in addition to standard care for BPSD. This article describes the statistical analysis plan. METHODS AND ANALYSIS: HOMESIDE is a large, pragmatic international three-arm parallel-group randomised controlled trial. Dyads (persons with dementia and caregiver) in Australia, Germany, the UK, Poland and Norway were randomised to receive music and standard care, reading and standard care or standard care alone. The primary outcome is BPSD (proxy) of the person living with dementia, measured using the Neuropsychiatric Inventory-Questionnaire (NPI-Q) at 90 and 180 days post-randomisation. Longitudinal analysis will compare NPI-Q severity between music and standard care versus standard care alone. Secondary outcomes include quality of life and depression (both person with dementia and caregiver), cognition (person with dementia only), distress, resilience, competence and caregiver-patient relationship (caregiver only). Treatment effects will be obtained at 90 and 180 days post-randomisation, where applicable. Safety outcomes (adverse events, hospitalisations, deaths) will be summarised. DISCUSSION: This statistical analysis plan provides a detailed methodology for the analysis of HOMESIDE and will improve the validity of the study and reduce the potential for bias. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001799246. Registered on November 05, 2018. CLINICALTRIALS: gov NCT03907748. Registered on April 09, 2019.

The Use of Telehealth Among People Living With Dementia-Caregiver Dyads During the COVID-19 Pandemic: Scoping Review.

BACKGROUND: Telehealth has gained substantial attention during the COVID-19 pandemic, and reimbursement policies in health care settings have increased access to remote modes of care delivery. Telehealth has the potential to mitigate care concerns for people living with dementia and their family caregivers. There is a paucity of knowledge on the performance of telehealth services and user experiences, especially among caregiving dyads during the pandemic. OBJECTIVE: This study aims to describe the implementation, effectiveness, user experience, and barriers to accessing and using telehealth services for people living with dementia and their caregivers during the COVID-19 pandemic. METHODS: Following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched 7 databases (PubMed, PsycINFO, AgeLine, CINAHL, Social Services Abstracts, Web of Science, and Scopus) and a web-based search engine (Google Scholar). The inclusion criteria for peer-reviewed English publications from March 2020 to August 2022 consisted of studies related to telehealth services for people living with dementia and their family caregivers and studies conducted during the COVID-19 pandemic. RESULTS: A total of 24 articles (10 quantitative and 14 qualitative studies) from 10 different countries were included. The major findings of the reviewed articles were extracted and organized into the following 4 themes: study design characteristics-strategies were adopted to improve the accessibility and experience of people living with dementia-caregiver dyads; efficacy outcomes of telehealth services-robust evidence is lacking on the comparative effectiveness of in-person services; perceived experiences of people living with dementia and caregivers-most reviewed studies reported positive experiences of using telehealth services and perceived personal and social benefits from their participants; and barriers to accessing and using telehealth services-several barriers related to individuals, infrastructure, and telehealth environments were identified. CONCLUSIONS: Although evidence of its effectiveness is still limited, telehealth is widely accepted as a viable alternative to in-person care for high-risk groups, such as people living with dementia and their caregivers. Future research should include expanding digital access for those with limited resources and low technology literacy, adopting randomized controlled trial designs to establish the comparative effectiveness of different modes of service delivery, and increasing the sample diversity.

Social support services for dementia during the COVID-19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom.

OBJECTIVES: To understand how the delivery of dementia-related social support services across the UK adapted during the pandemic. METHODS: We devised a two-part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). RESULTS: A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty-six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in-person to remote or hybrid. While in-person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. CONCLUSIONS: Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in-person services. Thus, the provision of in-person and remote services needs to be carefully balanced amidst the current hybrid landscape. PATIENT OR PUBLIC CONTRIBUTION: Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia-related social support services before and or during the pandemic in the United Kingdom.

Managing dementia care during COVID-19 pandemic: caregivers' experiences in Odisha, India.

AIM: The present study explored the family caregivers' perspectives and elicited their experience while managing dementia care during the COVID-19 pandemic in Odisha, India. BACKGROUND: The onset of the COVID-19 pandemic has diverted the attention of health systems away from chronic disease management and health services delivery. Psychiatric care particularly for dementia and the elderly is found to be more compromised in such situation. METHODS: We adopted an inductive phenomenological approach to garner key insights into the care continuity for people living with dementia in the context of the COVID-19 pandemic. Telephonic in-depth interviews (IDIs) were carried out with 17 immediate caregivers. All IDIs were digitally recorded, transcribed, and analysed using a thematic approach. FINDINGS: Caregivers did not perceive dementia as an overwhelming challenge; instead viewed it as a part of the ageing process. Caring for dementia was being done by family members as a collective responsibility with task-sharing. The caregivers primarily relied on their usual physician for the continuity of dementia care and took utmost precautions to prevent exposure to COVID-19 risk. However, they found it more challenging to ensure adequate care for the multiple illnesses (multimorbidity) coexisting with dementia. Towards this, they adopted all possible measures to keep the chronic conditions under control, lest the vulnerability to COVID-19 infection might heighten. The fear of visiting a hospital, prevailing restrictions in mobility, and diverted attention of health systems to pandemic containment created impediments towards maintaining multimorbidity care. The support of local administration, neighbourhood pharmacy and diagnostic laboratories and teleconsultation with the physicians were vital for care continuity. Caregivers adapted by reducing or deferring physical consultation and seeking treatment via telephonic advice of the treating physicians. Our findings suggest leveraging digitally enabled health care technology and augmenting caregiver activation for home-based dementia care to cruise through any similar catastrophic situations.

Improving primary care based post-diagnostic support for people living with dementia and carers: Developing a complex intervention using the Theory of Change.

BACKGROUND: The need to improve support following a diagnosis of dementia is widely recognised, but it is unclear how this can best be achieved within UK health and social care systems. A task-shared and task-shifted approach has been recommended, but there is limited guidance on how to achieve this in practice. As part of a programme of research, we developed an intervention to enhance the role of primary care in post-diagnostic care and support for people living with dementia and carers. METHODS: We used the Theory of Change to develop a complex intervention informed by initial literature reviews and qualitative work. The intervention was developed through an iterative series of workshops, meetings and task groups with a range of stakeholders, including the multidisciplinary project team, people living with dementia and carers, service managers, frontline practitioners, and commissioners. RESULTS: 142 participants contributed to intervention development through face-to-face or virtual meetings. The intervention comprises three complementary strands of work focusing on: developing systems, delivering tailored care and support, and building capacity and capability. Clinical dementia leads, based in primary care networks, will facilitate the intervention providing tailored expertise and support. CONCLUSION: The Theory of Change proved useful in providing structure and engaging stakeholders. The process was challenging, took longer and was less participative than intended due to restrictions caused by the COVID-19 pandemic. We will next conduct a feasibility and implementation study to explore whether the intervention can be successfully delivered within primary care. If successful, the intervention offers practical strategies for delivering a task-shared and task-shifted approach to post-diagnostic support that could be adapted for similar health and social care contexts internationally.

How to manage comorbidities in people with dementia: A scoping review.

BACKGROUND: People with dementia experience a high prevalence of comorbidities that seriously affect patient outcomes. The aim of this study was to map the evidence and components related to comorbidity management, including interventions to facilitate and support the practice of management. METHODS: A scoping review was conducted. In June 2022, PubMed, Web of Science, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), The National Institute of Health and Care Excellence (NICE), Open grey, and the Cochrane Library were searched to identify relevant literature. The inclusion criteria were outlined to identify studies on comorbidity management in people with dementia. RESULTS: We found 43 items that met the inclusion criteria. The majority of the studies were published since 2010. Most research focused on medication management, health care service use and provision, and comorbidity-related monitoring and management; there were a small number of studies that involved decision-making. Only 6 studies developed interventions to support dementia care, which included comorbidity management. Studies involving the comorbidity management process were mainly based on qualitative methods, which make it difficult to quantify the impact of these processes on comorbidity management. CONCLUSIONS: Given the serious impact of dementia on managing comorbidities, there is a need to develop systematic interventions targeting the management of comorbidities.

"We Did More Damage": How COVID-19 Collapsed the Care Convoys of Residents Living With Dementia.

COVID-19 regulations have posed challenges for long-term care (LTC). However, few studies have examined how such regulations influenced the care of residents living with dementia. Our objective was to gain an understanding of LTC administrative leaders' perceptions regarding the impact of the COVID-19 response on this population. Using the convoys of care framework, we conducted a qualitative descriptive study. Forty-three participants, representing 60 LTC facilities, completed one interview where they described how COVID-19 policies shaped care for residents living with dementia. Results from deductive thematic analysis revealed that participants believed the care convoys of residents living with dementia were strained. Participants emphasized how diminished family involvement, increased staff responsibilities, and the industry's heightened regulatory climate contributed to disrupted care. Further, they highlighted how pandemic-focused safety guidelines did not always consider the unique needs of those living with dementia. Consequently, this study may inform policy by outlining considerations for future emergencies.

Reducing rural isolation through music: telehealth music therapy for community dwelling people living with dementia and their family caregivers in rural Ireland.

INTRODUCTION: Since the outset of COVID-19, we have become more reliant on technology to stay connected to others. Notable benefits of telehealth have been observed, including increased access to health and community support services for community dwelling people living with dementia and their family caregivers and diminishing barriers such as geographical location, mobility issues and increased cognitive decline. Music therapy is an evidence-based intervention for people living with dementia and has been proven to promote improved quality of life, increase social interaction and provide a form of meaningful communication and expression when language becomes difficult. This project is one of the first internationally to pilot telehealth music therapy for this population. METHODS: This mixed methods action research project has six iterative phases of planning, research, action, evaluation, and monitoring. Public and Patient Involvement (PPI) has been sought from members of The Dementia Research Advisory Team at the Alzheimer Society of Ireland at all stages of the research process to ensure the research remains relevant and applicable to those with dementia. The presentation will briefly outline the phases of the project. RESULTS: Preliminary results from this ongoing research suggest that there is feasibility for telehealth music therapy to provide psychosocial support to this population. Collaboration with PPI contributors resulted in the following research priorities: (1) ensuring a person-centered approach; (2) advanced care planning using music; and (3) the signposting of music related supports for community dwelling people living with dementia. Music therapy is being piloted currently and preliminary results will be outlined. DISCUSSION: Telehealth music therapy has the potential to complement existing rural health and community services for people living with dementia, in particular addressing social isolation. Recommendations regarding the relevance of cultural and leisure pursuits on health and well-being of people living with dementia will be discussed, particularly the development of online access.

Developing an animated COVID-19 e-curriculum for adults with dementia and caregivers: Challenges and solutions.

OBJECTIVES: Effective education and support for adults with dementia and their caregivers around pandemic issues is critical for protecting them. Animation-based learning has shown promise in patient education. We collaborated with educators and support staff at Alzheimer's Association Connecticut (AACT) to conduct a mixed-methods study and develop an animated e-curriculum addressing pandemic related challenges. METHODS: We conducted focus groups and surveys with dementia and caregiver educators and support staff at AACT for the initial needs assessment and the later e-curriculum evaluation. An interdisciplinary team of educators followed a step-wise process to transform the needs assessment results into an animation based e-curriculum. RESULTS: Participants identified the following pandemic challenges: 1) social isolation, 2) caregiver fatigue, 3) safety, and 4) difficulty navigating the healthcare system. The overall quality and usefulness of the e-curriculum was "very good" or "excellent". CONCLUSIONS: An animated e-curriculum addressing pandemic related issues relevant to adults with dementia and caregivers had positive reviews and was associated with improvement in self-reported ability to perform curriculum objectives among community dementia educators. PRACTICE IMPLICATIONS: The pandemic challenges identified may facilitate the development of further resources. Additionally, this project may serve as a guide for clinicians interested in incorporating animation into education efforts.

Italian guidance on Dementia Day Care Centres: A position paper.

Dementia Day Care Centres (DDCCs) are defined as services providing care and rehabilitation to people with dementia associated with behavioural and psychological symptoms (BPSD) in a semi-residential setting. According to available evidence, DDCCs may decrease BPSD, depressive symptoms and caregiver burden. The present position paper reports a consensus of Italian experts of different disciplines regarding DDCCs and includes recommendations about architectural features, requirements of personnel, psychosocial interventions, management of psychoactive drug treatment, prevention and care of geriatric syndromes, and support to family caregivers. DDCCs architectural features should follow specific criteria and address specific needs of people with dementia, supporting independence, safety, and comfort. Staffing should be adequate in size and competence and should be able to implement psychosocial interventions, especially focused on BPSD. Individualized care plan should include prevention and treatment of geriatric syndromes, a targeted vaccination plan for infectious diseases including COVID-19, and adjustment of psychotropic drug treatment, all in cooperation with the general practitioner. Informal caregivers should be involved in the focus of intervention, with the aim of reducing assistance burden and promoting the adaptation to the ever-changing relationship with the patient.

Associations of cognitive impairment with self-isolation and access to health and care during the COVID-19 pandemic in England.

This research explored experiences across three cognitive function groups (no impairment, mild impairment, and dementia) with respect to shielding (either self-isolating or staying at home), COVID-19 infection, and access to health/care services during the COVID-19 pandemic. Analyses were conducted using data from the English Longitudinal Study of Ageing (ELSA) COVID-19 sub-study collected in 2020. We report bivariate estimates across our outcomes of interest by cognitive function group along with multivariate regression results adjusting for demographic, socioeconomic, geographic, and health characteristics. Rates of shielding were high across all cognitive function groups and three measured time points (April, June/July, and Nov/Dec 2020), ranging from 74.6% (95% confidence interval 72.9-76.2) for no impairment in Nov/Dec to 96.7% (92.0-98.7) for dementia in April (bivariate analysis). 44.1% (33.5-55.3) of those with dementia experienced disruption in access to community health services by June/July compared to 34.9% (33.2-36.7) for no impairment. A higher proportion of those with mild impairment reported hospital-based cancellations in June/July (23.1% (20.1-26.4)) and Nov/Dec (16.3% (13.4-19.7)) than those with no impairment (18.0% (16.6-19.4) and 11.7% (10.6-12.9)). Multivariate adjusted models found that those with dementia were 2.4 (1.1-5.0) times more likely than those with no impairment to be shielding in June/July. All other multivariate analyses found no statistically significant differences between cognitive function groups. People with dementia were more likely than people with no impairment to be shielding early in the pandemic, but importantly they were no more likely to experience disruption to services or hospital treatment.

Healthcare professionals' perception of using a web-based reminiscence therapy to support person with dementia during the COVID-19 pandemic.

BACKGROUND: Reminiscence therapy (RT) is the most common non-pharmacological treatment for dementia care. The therapy stimulates the senses to evoke memories having the potential to reduce Behavioral and Psychological Symptoms of Dementia (BPSD). Digital RT, such as web-based reminiscence therapy (WBRT), has the potential to support dementia care and reduce the caregiving burden. AIMS: This study aimed to explore healthcare professionals (HCPs) perceptions of utilizing WBRT in institutionalized settings to support persons with dementia during the COVID-19 pandemic. METHODS: A qualitative phenomenological descriptive study was adopted and guided by Graham's Knowledge to Action framework. Online training on the use of WBRT was conducted, followed by interviews with HCPs. RESULTS: Four major themes were identified on the potential use of WBRT in dementia care, including usability and efficacy, impact on caregiving, capability of reducing BPSD, and. feasibility during COVID-19 social distancing. DISCUSSION: This study recognized the potential use of WBRT to support the person with dementia during the pandemic in institutionalized settings. CONCLUSION: The knowledge generated from this study will guide the future application of WBRT to support dementia care in diverse healthcare settings.

A Conversation About the Ethics of Past and Future Memory Care Models: Perspectives from the First Two European Dementia Villages.

Dementia care organizations face a range of daunting environmental changes and challenges. Internationally, there is a long history of efforts to improve quality of care and life for individuals with dementia. In a time of particular attention to the images of older adults confined to a single or shared room in a care facility due to COVID-19, autonomy becomes the overarching problem, not only because in general institutions limit the freedom of frail elders, but because the existential conditions that create the need for long term care such as chronic disease, cognitive decline, and the need for general support with activities of daily living (ADLs) rail against the autonomy of independent self-sufficiency. Additionally, these environments are institutional in design and size, with little access to outdoor spaces and other amenities. This perspective manuscript addresses the ethics of past and future memory care models, looking specifically at the European Dementia Village (DV) model. This model allows for autonomy and continuation of patterns of daily living through housing integrated with exterior walks, gardens, restaurants, and amenities within familiar and normal surroundings. This pioneering health care experiment negotiates rivaling discourses of intimacy, professionalization, and medicalization. In order to get a deeper understanding of the culture and ethics of this integrated care model, the first two dementia village sites were visited which included meetings with care staff and administrators. Those conversations and observations led to a series of aligned themes relating to the ethics of the DV model which include: the strength of the social approach, clinical support, resident/staff collaborations, and advocating for ethical dementia care. Rethinking the ethics of dementia care entails individual perspectives and group discussions on what can keep individuals social connected within their care community, including focusing on strengths of the individual and normalized daily routines.

Non-pharmacological, psychosocial MAKS-s intervention for people with severe dementia in nursing homes: results of a cluster-randomised trial.

BACKGROUND: Severe dementia is one of the most challenging conditions when caring for people in nursing homes. A manualised non-pharmacological, psychosocial group intervention especially adapted to the needs of people with severe dementia (PWSDs) is currently still lacking. To close this gap, we adapted the evidence-based multicomponent non-pharmacological MAKS intervention (Motor stimulation, ADL stimulation, Cognitive [german: Kognitive] stimulation, and Social functioning in a group setting) to the special needs of PWSDs called the MAKS-s intervention, where the s stands for severe dementia. METHODS: In a prospective, multicentre, cluster-randomised trial with a waitlist control group design, 26 nursing homes comprising 152 PWSDs were randomly assigned to either the MAKS-s intervention group (IG) or control group (CG) - 121 PWSDs were still alive after the 6-month intervention period (t6) and included in the intention-to-treat (ITT) sample. The two primary outcomes, behavioural and psychological symptoms (BPSDs, measured with NPI-NH) and quality of life (QoL, measured with QUALIDEM), and the secondary outcome, activities of daily living (ADLs, measured with ADCS-ADL-sev), were assessed at baseline (t0) and at t6. Mixed ANOVAs were computed to investigate possible effects of the MAKS-s intervention on the outcomes. RESULTS: In the ITT sample, BPSDs and QoL did not change significantly over time, and group assignment did not affect them, although the IG participants had significantly better overall QoL than the CG participants. ADLs decreased significantly over time, but group assignment did not affect them. Analyses in the per protocol (PP) sample showed comparable results, with the exception that the IG participants showed a significantly greater increase in BPSDs than the CG participants did. DISCUSSION: Under the situational conditions of the Covid-19 pandemic, no beneficial effects of the MAKS-s intervention on BPSDs, QoL, or ADLs were observed. This finding also means that under 'normal circumstances' (i.e., if there had been no pandemic), we could not make any statements about the effect or non-effect of MAKS-s. In order to be able to address the hypotheses formulated here, the study will have to be repeated incorporating helpful experiences of the present study. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN15722923 (Registered prospectively, 07. August 2019).

The impact of dementia, frailty and care home characteristics on SARS-CoV-2 incidence in a national cohort of Welsh care home residents during a period of high community prevalence.

BACKGROUND: dementia may increase care home residents' risk of COVID-19, but there is a lack of evidence on this effect and on interactions with individual and care home-level factors. METHODS: we created a national cross-sectional retrospective cohort of care home residents in Wales for 1 September to 31 December 2020. Risk factors were analysed using multi-level logistic regression to model the likelihood of SARS-CoV-2 infection and mortality. RESULTS: the cohort included 9,571 individuals in 673 homes. Dementia was diagnosed in 5,647 individuals (59%); 1,488 (15.5%) individuals tested positive for SARS-CoV-2. We estimated the effects of age, dementia, frailty, care home size, proportion of residents with dementia, nursing and dementia services, communal space and region. The final model included the proportion of residents with dementia (OR for positive test 4.54 (95% CIs 1.55-13.27) where 75% of residents had dementia compared to no residents with dementia) and frailty (OR 1.29 (95% CIs 1.05-1.59) for severe frailty compared with no frailty). Analysis suggested 76% of the variation was due to setting rather than individual factors. Additional analysis suggested severe frailty and proportion of residents with dementia was associated with all-cause mortality, as was dementia diagnosis. Mortality analyses were challenging to interpret. DISCUSSION: whilst individual frailty increased the risk of COVID-19 infection, dementia was a risk factor at care home but not individual level. These findings suggest whole-setting interventions, particularly in homes with high proportions of residents with dementia and including those with low/no individual risk factors may reduce the impact of COVID-19.

End-of-life care for people with dementia on a green care farm during the COVID-19 pandemic: a qualitative study.

OBJECTIVE: Green care farms combine agriculture production with health-related, social and educational services. In the Netherlands, they form an alternative to traditional nursing homes for people with dementia. Green care farms that offer 24-hour care, also offers end-of-life care. To date, little is known about end-of-life care for people with dementia on green care farms. This study aimed to explore the experiences of healthcare workers and family caregivers with end-of-life care for people with dementia who died on a green care farm. DESIGN: An explorative, descriptive qualitative design with a phenomenological approach. SETTING AND PARTICIPANTS: A purposive sample of 15 participants - seven healthcare workers and eight family caregivers - from three green care farms in the Netherlands. METHODS: Semi-structured, in-depth interviews were conducted to explore participants' experiences with end-of-life care, including topics such as advance care planning, the influence of COVID-19, and bereavement support. Transcripts were thematically analysed using Braun and Clarke's approach. RESULTS: Four main themes were extracted: 1) tailored care and attention for the individual resident, 2) reciprocal care relationships between healthcare workers and family caregivers, 3) compassionate care and support in the dying phase, and 4) the influence of COVID-19 on end-of-life care. CONCLUSION AND IMPLICATIONS: The overall experience of the healthcare workers and family caregivers was that end-of-life care offered on green care farms is person-centred and compassionate and is tailored to the person with dementia and their family caregivers. Despite the COVID-19 pandemic, healthcare workers and family caregivers were satisfied with end-of-life care on the green care farms. Green care farms may offer a valuable alternative care setting for people with dementia in their last phase of life. More research is needed to investigate green care farms'benefits compared to other, more traditional settings.