Patterns of Telemedicine Use in Primary Care for People with Dementia in the Post-pandemic Period.

BACKGROUND: The pandemic rapidly expanded telemedicine, which has persisted as a widely available primary care modality. The uptake of telemedicine among people with dementia specifically in the primary care setting, who have more complex care needs but also benefit from more accessible primary care, is unknown. OBJECTIVE: Among people with dementia, assess uptake of telemedicine-based primary care in the post-pandemic period and determine associations with key socio-demographic characteristics. DESIGN: Retrospective observational study. SUBJECTS: People with dementia at UCSF and Kaiser Permanente Northern CA (KPNC) with at least one primary care encounter in pre- (3/1/2019-2/29/2020) or post-COVID (3/1/2021-2/28/2022) periods, post-COVID sample: N= 419 individuals (UCSF), N=18,037 (KPNC). MAIN MEASURES: Encounter modality: in-person, video telemedicine, or telephone telemedicine. Focal socio-demographic characteristics: age, limited English proficiency, socioeconomic status, driving distance to clinic, and caregiver at encounter. KEY RESULTS: There was a large increase in telemedicine among people with dementia in the post-pandemic period at both sites. At KPNC, those with only in-person primary care visits shrunk from 60.47% (pre) to 26.95% (post). At UCSF, the change was even greater: 98.99% to 35.08%. Across both sites, the only measure significantly associated with use of telemedicine was greater driving distance from home to clinic. At KPNC, those over age 90 were most likely to use telemedicine while patients with limited English proficiency and those with a caregiver at the encounter used telemedicine at lower levels. The relationships were similar at UCSF but not statistically significant. CONCLUSIONS: Telemedicine use is high for people with dementia in the primary care setting in the post-pandemic period. Those with longer drives to clinic and the oldest patients were most likely to use telemedicine, likely due to challenges traveling to appointments. Still, not all people with dementia used telemedicine equally-particularly those with limited English proficiency.

Promoting Independence Through Quality Dementia Care at Home (PITCH): An Australian Stepped-Wedge Cluster Randomised Controlled Trial Evaluating a Dementia Training Program for Home Care Workers.

OBJECTIVES: The primary aim of this pragmatic stepped-wedge cluster RCT was to determine the efficacy of a co-designed dementia specialist training program (the PITCH program) for home care workers (HCWs) to improve their confidence and knowledge when providing care for clients living with dementia. METHODS: HCWs who provided care to clients with dementia were recruited from seven home care service provider organisations in Australia between July 2019 and May 2022, and randomised into one of 18 clusters. The primary outcome was HCW's sense of self-competence in providing care services to people living with dementia at 6 months post PITCH training measured by the Sense of Competence in Dementia Care Staff (SCIDS) Scale. RESULTS: Two hundred and thirteen HCWS completed baseline assessment and almost half (48.4%) completed all three study assessments. HCWs in clusters that received PITCH training had significantly higher sense of competence (measured by SCIDS) than those who had not received PITCH training. Post hoc analysis revealed that face-to-face PITCH training consistently resulted in improvements in the HCWs sense of competence, dementia attitudes and knowledge when compared to online training and when compared to no training. PITCH training had no effect on the sense of strain HCWs felt in delivering dementia care. CONCLUSIONS: Given the majority of care for people living with dementia is provided at home by family carers supported by HCWs, it is essential that HCWs receive training that improves their skills in dementia care. This study is an important step towards better care at home for people living with dementia.

Characteristics, outcomes, facilitators and barriers for psychosocial interventions on inpatient mental health dementia wards: a systematic review.

BACKGROUND: The National Institute for Health and Care Excellence guidelines state that psychosocial interventions should be the first line of treatment for people with dementia who are experiencing distress behaviours, such as agitation and depression. However, little is known about the characteristics and outcomes of psychosocial interventions or the facilitators and barriers to implementation on inpatient mental health dementia wards which provide care for people with dementia who are often experiencing high levels of distress. METHODS: A systematic search was conducted on MEDLINE, CINAHL, PsycINFO, Psychology and Behavioural Sciences Collection, and Scopus in May 2023, following PRISMA guidelines. Reference and citation searches were conducted on included articles. Peer-reviewed literature of any study design, relating to psychosocial interventions in inpatient mental health dementia wards, was included. One author reviewed all articles, with a third of results reviewed independently by a second author. Data were extracted to a bespoke form and synthesised using a narrative review. The quality of included studies was appraised using the Mixed Methods Appraisal Tool. RESULTS: Sixteen studies were included in the synthesis, which together included a total of 538 people with dementia. Study methods and quality varied. Psychosocial interventions delivered on wards included music therapy (five studies), multisensory interventions (four studies), multicomponent interventions (two studies), technology-based interventions (two studies), massage interventions (two studies) and physical exercise (one study). Reduction in distress and improvement in wellbeing was demonstrated inconsistently across studies. Delivering interventions in a caring and individualised way responding to patient need facilitated implementation. Lack of staff time and understanding of interventions, as well as high levels of staff turnover, were barriers to implementation. CONCLUSION: This review highlights a striking lack of research and therefore evidence base for the use of psychosocial interventions to reduce distress in this vulnerable population, despite current healthcare guidelines. More research is needed to understand which psychosocial interventions can reduce distress and improve wellbeing on inpatient mental health dementia wards, and how interventions should be delivered, to establish clinical and cost effectiveness and minimise staff burden.

Healthcare professionals' experiences and views of providing continence support and advice to people living at home with dementia: "That's a carer's job".

BACKGROUND: People living with dementia at home and their family carers often feel unsupported by healthcare professionals in managing continence problems. In turn, primary and community-based healthcare professionals have reported lacking specific knowledge on dementia-continence. This study aimed to understand more about healthcare professionals' experiences and views of supporting people living with dementia experiencing continence problems, as part of developing acceptable resources. Having a nuanced understanding of unmet need would facilitate the design of engaging resources that enable healthcare professionals to provide more effective continence support to people living with dementia at home. METHODS: Semi-structured interviews were conducted with a range of healthcare professionals (n = 31) working in primary and community care in the South of England in 2023. Transcribed interviews were uploaded to NVivo 12, then analysed inductively and deductively using a thematic framework. RESULTS: Continence-related conversations were avoided by many healthcare professionals due to lack of dementia-continence specific knowledge. Many considered that continence problems of people living with dementia were largely outside their remit once a physical cause had been ruled out. This contributed to a lack of priority and proactivity in raising the subject of continence in their consultations. Challenges to providing support included limited consultation time and lack of access to specialist services with availability to support individuals. CONCLUSION: There is substantial scope to support primary and community-based healthcare professionals in their provision of continence-related support and advice to people living at home with dementia. This includes addressing knowledge deficits, enhancing confidence and instilling a sense of accomplishment.

Insights and recommendations for working collaboratively and improving care in Alzheimer's disease: Learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council.

BACKGROUND: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross-sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. OBJECTIVE: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. RESULTS: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. CONCLUSIONS: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co-create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. PATIENT OR PUBLIC CONTRIBUTION: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. CLINICAL TRIAL REGISTRATION: Not applicable.

Associations between specialized dementia care, COVID-19 and central nervous system medication use in assisted living: a population-based repeated cross-sectional study.

BACKGROUND: Assisted living (AL) is an increasingly common residential setting for persons with dementia; yet concerns exist about sub-optimal care of this population in AL given its lower levels of staffing and services. Our objectives were to (i) examine associations between AL setting (dementia care vs. other), COVID-19 pandemic waves, and prevalent antipsychotic, antidepressant, anti-dementia, benzodiazepine, and anticonvulsant drug use among residents with dementia/cognitive impairment, and (ii) explore associations between resident and home characteristics and prevalent medication use. METHODS: We conducted a population-based, repeated cross-sectional study using linked clinical and health administrative databases for all publicly funded AL homes in Alberta, Canada, examined between January 2018 - December 2021. The quarterly proportion of residents dispensed a study medication was examined for each setting and period (pandemic vs. comparable historical [2018/2019 combined]) focusing on four pandemic waves (March-May 2020, September 2020-February 2021, March-May 2021, September-December 2021). Log-binomial GEE models estimated prevalence ratios (PR) for period (pandemic vs. historical periods), setting (dementia care vs. other) and period-setting interactions, adjusting for resident (age, sex) and home (COVID-19 cases, health region, ownership) characteristics. RESULTS: On March 1, 2020, there were 2,779 dementia care and 3,013 other AL residents (mean age 83, 69% female) with dementia/cognitive impairment. Antipsychotic use increased during waves 2-4 in both settings, but this was more pronounced in dementia care than other AL during waves 3 and 4 (e.g., adjusted [adj]PR 1.20, 95% CI 1.14-1.27 vs. adjPR 1.09, 95% CI 1.02-1.17, interaction p = 0.023, wave 3). Both settings showed a statistically significant but modest increase in antidepressant use and decrease in benzodiazepine use. For dementia care AL residents only, there was a statistically significant increase in gabapentinoid use during several waves (e.g., adjPR 1.32, 95% CI 1.10-1.59, wave 3). Other than a modest decrease in prevalent anti-dementia drug use for both settings in wave 2, no other significant pandemic effects were observed. CONCLUSIONS: The persistence of the pandemic-associated increase in antipsychotic and antidepressant use in AL residents coupled with a greater increase in antipsychotic and gabapentinoid use for dementia care settings raises concerns about the attendant risks for residents with cognitive impairment.

Providing and receiving support through a tailor-made mobile app: a qualitative study on experience of professionals and family caregivers to persons with dementia.

BACKGROUND: The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. METHODS: A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. RESULTS: The social care professionals and the FCs' experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support. CONCLUSIONS: This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.

mHealth based intervention by social care professionals to support family caregivers to persons with dementia living at home in Sweden (Caregiver Connect): a randomized controlled trial.

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

Does assistive technology contribute to safety among home-dwelling older adults?

BACKGROUND: Assistive technology carries the promise of alleviating public expenditure on long-term care, while at the same time enabling older adults to live more safely at home for as long as possible. Home-dwelling older people receiving reablement and dementia care at their homes are two important target groups for assistive technology. However, the need for help, the type of help and the progression of their needs differ. These two groups are seldom compared even though they are two large groups of service users in Norway and their care needs constitute considerable costs to Norwegian municipalities. The study explores how assistive technology impacts the feeling of safety among these two groups and their family caregivers. METHODS: Face-to-face, semi-structured interviews lasting between 17 and 61 min were conducted between November 2018 and August 2019 with home-dwelling older adults receiving reablement (N = 15) and dementia care (N = 10) and the family caregivers (N = 9) of these users in seven municipalities in Norway. All interviews were audio-recorded, fully transcribed, thematically coded and inductively analyzed following Clarke and Braun's principles for thematic analysis. RESULTS: Service users in both groups felt safe when knowing how to use assistive technology. However, the knowledge of how to use assistive technology was not enough to create a feeling of safety. In fact, for some users, this knowledge was a source of anxiety or frustration, especially when the user had experienced the limitations of the technology. For the service users with dementia, assistive technology was experienced as disturbing when they were unable to understand how to handle it, but at the same time, it also enabled some of them to continue living at home. For reablement users, overreliance on technology could undermine the progress of their functional improvement and thus their independence. CONCLUSION: For users in both service groups, assistive technology may promote a sense of safety but has also disadvantages. However, technology alone does not seem to create a sense of safety. Rather, it is the appropriate use of assistive technology within the context of interactions between service users, their family caregivers and the healthcare staff that contributes to the feeling of safety.

Post-diagnostic support for persons with young-onset dementia - a retrospective analysis based on data from the Swedish dementia registry SveDem.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

Making robots matter in dementia care: Conceptualising the triadic interaction between caregiver, resident and robot animal.

While previous research studies have focused on either caregivers' or residents' perception and use of social robots, this article offers an empirical and theoretical examination of joint activities in triadic human-robot interaction. The symptomatology of dementia creates an asymmetrical relation wherein the impetus to employ a robot often originates from the caregiver. Drawing on field work and video recorded interactions in dementia care homes, the article investigates how caregivers draw on embodied resources to involve residents and robot animals in interaction. The analysis demonstrates how caregivers promote commitment and encounter resistance with residents. We draw on the theory of sociomaterial interactionism to study situated interaction between bodies in a meaning-generating process. By re-conceptualising the theoretical notions of manipulation and recruitment, the article offers an approach for studying orientations that distinguish between reciprocity of agential objects. We show that caregivers usually distinguish between interactions with people and machines by anticipating a specific response from the robots (manipulation), while they invite participation in a broader sense from residents (recruitment). Social friction arises, however, if caregivers act upon the residents as embodied objects in manipulative ways.

Ethical self-efficacy among healthcare professionals caring for people with dementia: a brief pre- and post-report on the CARE intervention.

BACKGROUND: Interventions targeting healthcare professionals' confidence in managing ethical issues in dementia care are limited despite documented positive effects of educational programs on staff knowledge and self-efficacy. However, inconsistencies in the literature regarding the impact of educational programs underscore the need for targeted interventions. The CARE intervention, specifically designed to enhance confidence in ethical decision-making, aims to address this gap. This study evaluates the effectiveness of the CARE intervention in enhancing the ethical self-efficacy of healthcare professionals caring for people with dementia, particularly those with initially low levels of self-efficacy. METHODS: Using a non-experimental pre-post evaluation design, the CARE intervention was administered to healthcare professionals (n = 86), measuring ethical self-efficacy pre-and post-intervention. We hypothesized significant differences in ethical self-efficacy mean scores pre- and post-intervention for all participants, particularly those with low pre-measurement scores, whom we expected to benefit most from the intervention. Statistical analysis included paired t-tests and Wilcoxon tests for the low pre-measurement subgroup analysis. RESULTS: While no significant change was observed in the entire sample, participants with low initial self-efficacy showed a statistically significant improvement post-intervention. CONCLUSIONS: The CARE intervention holds promise in improving ethical self-efficacy among healthcare professionals with initial low confidence levels. Targeted interventions are essential in addressing confidence gaps in managing ethical challenges in dementia care, with implications for professional well-being and quality of care. Further research should explore long-term effects and expand sample size to enhance generalizability and sustainability of findings.

Everyday Uses of Music Listening and Music Technologies by Caregivers and People With Dementia: Survey and Focus Group Study.

BACKGROUND: Music has long been identified as a nonpharmacological tool that can provide benefits for people with dementia, and there is considerable interest in designing technologies to support the use of music in dementia care. However, to ensure that music technologies are appropriately designed for supporting caregivers and people living with dementia, there remains a need to better understand how music is currently used in everyday dementia care at home. OBJECTIVE: This study aims to understand how people living with dementia and their caregivers use music and music technologies in everyday caring, as well as the challenges they experience using music and technology. METHODS: This study used a mixed methods design. First, a survey was administered to 13 people living with dementia and 64 caregivers to understand their use of music and technology. Subsequently, 18 survey respondents (family caregivers: n=12, 67%; people living with dementia: n=6, 33%) participated in focus groups regarding their experiences of using music and technology in care. Interview transcripts were analyzed using reflexive thematic analysis. RESULTS: Most of the survey respondents (people living with dementia: 9/13, 69%; family caregivers: 47/63, 75%) reported using music often or very often in their daily lives. Participants reported a range of technologies used for listening to music, such as CDs, radio, and streaming services. Focus groups highlighted the benefits and challenges of using music and music technologies in everyday care. Participants identified using music and music technologies to regulate mood, provide joy, facilitate social interaction and connection, encourage reminiscence, provide continuity of music use before and after the dementia diagnosis, and make caregiving easier. The challenges of using music technology in everyday caring included difficulties with staying up to date with evolving technology and low self-efficacy with technology for people living with dementia. CONCLUSIONS: This study shows that people with a dementia diagnosis and their caregivers already use music and music technologies to support their everyday care needs. The results suggest opportunities to design technologies that enable easier access to music and to support people living with dementia with recreational and therapeutic music listening as well as music-based activities.

Application of the solution-focused brief strategies via telephone for family caregivers of persons with dementia: the Alzheimer's Association National Helpline.

OBJECTIVES: Nearly 75% of persons living with dementia (PLWD) in the US live at home and are cared for by informal family members who have limited access to supportive and accessible services, indicating an increased need for these types of services (Alzheimer's Association, 2023). The Alzheimer's Association call centers offer free telephone care consultations, but it currently remains unclear which types of brief telephone support benefit caregivers. This study compares outcomes of participants who received traditional care consultation calls via the Alzheimer's Association National Helpline with care consultation calls from Helpline staff trained in Solution-Focused Brief Strategies (SFBS), a client-centered evidence- and resource-based approach. METHOD: Sequential callers were randomly assigned to the "traditional" or "SFBS" care consultation groups and were assessed at the time of call (baseline) and post-call (T1). The outcomes of interest were general self-efficacy (GSE), self-efficacy in managing emotions (PROMIS), caregiver mastery, therapeutic alliance, and goal setting. RESULTS: Of over 500 callers, callers receiving the SFBS scored higher on therapeutic alliance and goal-setting metrics, such as greater sense of collaboration on goals (effect size = 0.280, p = 0.0005, significant with Bonferroni correction), mutual agreement with care consultant on goals (effect size = 0.418, p < 0.0001, significant with Bonferroni correction), and believing the way the problem was resolved was correct (effect size = 0.286, p = 0.0007, significant with Bonferroni correction) than those receiving the traditional care consultation. Both groups reported improvements in the PROMIS measure, but there were no differences between groups. There were no significant differences in GSE or caregiver mastery scores between groups. CONCLUSION: This study provides evidence for the effectiveness of the integration of SFBS in dementia care consultation calls as part of telephone-based supportive services for dementia caregivers.

Caregivers' perceptions of lying to people with dementia in Denmark: a qualitative study.

OBJECTIVES: This study aims to examine caregivers' perspectives on and justifications for lying when caring for people with dementia. METHOD: The data consisted of interviews and observations of discussions among family and professional caregivers with various educational backgrounds. Thematic analysis was applied to identify key themes related to caregivers' perspectives on lying. RESULTS: The study revealed that lies were frequently employed by caregivers and were seen as effective tools in the caregivers' toolkit. These practices were often labelled 'white lies' and were rationalised based on their potential to enhance the well-being of people with dementia or to facilitate smooth interactions. The potential negative consequences of lying were also acknowledged. In addition, some caregivers suggested that the practice of 'stepping into the person with dementia's reality' might not constitute lying. CONCLUSION: The findings suggest that the caregivers perceived lying to be a legitimate strategy when caring for people with dementia; surprisingly, some did not recognize their practices as constituting acts of lying at all. This finding carries significant clinical relevance, as the varying perceptions of lying underscore the potential need for a consistent approach to deception. Addressing this complexity can lead to more ethical caregiving practices, ultimately enhancing the quality of care provided to people with dementia.

Eating experiences in people living with dementia: A concept analysis using Rodgers's methodology.

AIMS: To analyse the concept of eating experiences in people living with dementia. DESIGN: Rodgers' evolutionary method of concept analysis was used as a framework for the paper. DATA SOURCES: The literature was searched using electronic databases PubMed, Google Scholar, CINHAL, PsycInfo, Web of Science, Embase and Elsevier databases. These databases cover a variety of disciplines, including but not limited to nursing, medicine and occupational therapy. The relevant literature published from 1989 to April 2023 was thoroughly examined. Any quantitative or qualitative studies published in English focused on eating or dining experiences in people with dementia were included. REVIEW METHODS: Rodgers' evolutionary method for concept analysis was used. The attributes, antecedents, consequences and case examples of the concept were identified. RESULTS: Twenty-two articles met the inclusion criteria, identifying key attributes of self-connection, the special journey of life and self-interpretation. Antecedents, as framed by the socio-ecological model, were categorized to represent intrapersonal (personal preferences, individual culture, mealtime routines), interpersonal (social interaction) and environmental (dining room environment, policies) factors. Consequences were divided into external (nutritional health, physical health and quality of life) and internal (personhood, autonomy and independence, dignity and feeling valued and mental well-being) domains. CONCLUSION: A theoretical definition and conceptual model of eating experiences in people living with dementia was developed. The identified attributes, antecedents and consequences can be utilized in nursing education, research and intervention approaches. IMPACT: This article allows nurses and other healthcare professionals to better understand people living with dementia through the relationship between eating and interpersonal, intrapersonal and environmental aspects to develop personalized interventions and care strategies to achieve an optimal quality of life. PATIENT OR PUBLIC CONTRIBUTION: Not applicable.

The design and implementation of a novel music-based curriculum for dementia care professionals: The experience of SOUND in Italy, Portugal and Romania.

BACKGROUND: The positive effects of active and passive music activities on older people with dementia are well and largely documented by the literature. Nevertheless, the use of music as a non-pharmacological intervention is not so common both in private and public older people care facilities because in-home staff have no competencies for delivering such activities. Conversely, the realization and implementation of a co-designed music-based curriculum for dementia care professionals may help the diffusion of music in the older people care facilities. This study was aimed at evaluating the learning outcomes of the SOUND training, based on an original co-designed music-based curriculum for dementia care professionals and implemented in Italy, Portugal and Romania. METHODS: The SOUND training study was developed through three phases: a) the co-design of the music-based curriculum for dementia care professionals, involving 55 people in the three participating countries; b) the teaching of the training curriculum to 63 dementia care professionals (29 in Italy, 17 in Portugal and 17 in Romania), delivered both in person and via a Moodle platform named Virtual Music Circle; c) the learning outcomes assessment, carried out by means of 13 self-evaluation tests, and a practical test, and the trainees' course evaluation by a questionnaire. RESULTS: Most of the trainees reached the highest score in the evaluation of the theoretical competencies in the three study countries. Conversely, some practical competencies in the facilitation of music activities need to be fine-tuned. The SOUND training course was evaluated very positively in the overall structure, theoretical contents, and practical workshops by the trainees. Nevertheless, they preferred the face-to-face compared to the distance learning methodology in the three countries. CONCLUSIONS: The SOUND training curriculum was effective in teaching music techniques and neurocognitive knowledge to dementia care professionals. Nevertheless, future courses should be differentiated for dementia care professionals with or without previous music knowledge and competencies. Moreover, the course is fully sustainable, because it does not require additional costs given that the curriculum is fully accessible online and it is also replicable because it trains professionals who can continue to apply the method in their working routine.

Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences.

AIMS: To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility. DESIGN: An interpretative qualitative study. METHODS: Semi-structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes. RESULTS: The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses - impacted by knowledge and lack of support; (2) Questioning decision making-underpinned by knowledge and confidence; and (3) Challenges in re-establishing identity - impacted by ongoing concerns. CONCLUSION: As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making. REPORTING METHOD: This research was guided by the Consolidated Criteria for Reporting Qualitative Research.

'We had conversations we wouldn't have had otherwise'-Exploring home-dwelling people with dementia and family members' experiences of deliberating on ethical issues in a literature-based intervention.

AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia. BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking. DESIGN: An exploratory-descriptive qualitative study. METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study. RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections. CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships. IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families. REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method. PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.