Equine-assisted services for people living with dementia: a systematic review.

BACKGROUND: Dementia has a significant impact on the social, physical, and psychological wellbeing of people living with dementia, their families and society. Animal-assisted interventions can have positive effects on the health and wellbeing of people living with dementia. Equine-assisted services are animal-assisted non-pharmacological interventions which have improved the health and wellbeing of diverse populations. The impact of participating in equine-assisted services on the health and wellbeing of people with dementia is unclear. A systematic review was conducted to synthesise evidence investigating the effects of participating in equine-assisted services on the health and wellbeing of people living with dementia. DESIGN: Systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. METHODS: The databases CINAHL, EMBASE, MEDLINE, and Web of Science were searched for any research published prior to 14 June 2023. Peer-reviewed publications in the English language utilizing methods deriving quantitative and/or qualitative data were eligible. Methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool. Findings from studies were synthesised using a deductive approach. RESULTS: Of the 223 articles screened, six met the inclusion criteria: four quantitative and two qualitative studies. The six studies represent four separate equine interventions. Studies were of moderate to strong quality. Participants were people living with dementia (n = 44, mean age range 70-83 years), dementia care partners (n = 5, mean age 58), and equine-assisted services providers (n = 5). Interventions varied in duration, activities conducted, outcomes measured, and measurement tools used. Studies found a favourable impact of participating in equine-assisted services on the neuropsychiatric symptoms and quality of life of people living with dementia. Participating in equine-assisted services improved well-being, functional abilities, social participation, and communication, while also having a positive effect on social, emotional, and behavioural outcomes, and physical health. CONCLUSIONS: The limited but high-quality literature investigating the impact of equine-assisted services among people living with dementia suggests that equine-assisted services can have a positive impact on the health and wellbeing of people living with dementia. Additional robust studies contributing to the evidence base are warranted; such studies can support the development of programs and further elucidate the impact of participation.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.

A longitudinal cohort study on the use of health and care services by older adults living at home with/without dementia before and during the COVID-19 pandemic: the HUNT study.

BACKGROUND: Older adults and people with dementia were anticipated to be particularly unable to use health and care services during the lockdown period following the COVID-19 pandemic. To better prepare for future pandemics, we aimed to investigate whether the use of health and care services changed during the pandemic and whether those at older ages and/or dementia experienced a higher degree of change than that observed by their counterparts. METHODS: Data from the Norwegian Trøndelag Health Study (HUNT4 70 + , 2017-2019) were linked to two national health registries that have individual-level data on the use of primary and specialist health and care services. A multilevel mixed-effects linear regression model was used to calculate changes in the use of services from 18 months before the lockdown, (12 March 2020) to 18 months after the lockdown. RESULTS: The study sample included 10,607 participants, 54% were women and 11% had dementia. The mean age was 76 years (SD: 5.7, range: 68-102 years). A decrease in primary health and care service use, except for contact with general practitioners (GPs), was observed during the lockdown period for people with dementia (p < 0.001) and those aged ≥ 80 years without dementia (p = 0.006), compared to the 6-month period before the lockdown. The use of specialist health services decreased during the lockdown period for all groups (p ≤ 0.011), except for those aged < 80 years with dementia. Service use reached levels comparable to pre-pandemic data within one year after the lockdown. CONCLUSION: Older adults experienced an immediate reduction in the use of health and care services, other than GP contacts, during the first wave of the COVID-19 pandemic. Within primary care services, people with dementia demonstrated a more pronounced reduction than that observed in people without dementia; otherwise, the variations related to age and dementia status were small. Both groups returned to services levels similar to those during the pre-pandemic period within one year after the lockdown. The increase in GP contacts may indicate a need to reallocate resources to primary health services during future pandemics. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov, with the identification number NCT04792086.

Primary caregivers' experiences of caring for people living with dementia in Ghana: a phenomenological study.

BACKGROUND: Dementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana. METHODS: Using a descriptive phenomenological design, we conducted in-depth interviews with primary caregivers in the Ashanti region, Ghana. A semi-structured interview guide was used as the data collection instrument. The data analysis followed Collazi's thematic analysis framework. All coding and categorization were done in NVivo-12. RESULTS: Five themes emerged from the analysis. These themes included (a) sacrifice of personal interests, and time commitments; (b) financial strain and negative impact on job; (c) feelings of stress and burnout; (d) experience of abuse and stigma; and (e) perceived blessing of caregiving. CONCLUSION: The study's findings resonate with existing literature, highlighting the consistent struggles faced by caregivers. Sacrificing personal interests, navigating financial strains, and grappling with stress and burnout emerged as pervasive themes. We conclude that despite the negative impacts of caring for PwD, caregivers perceived their role as associated with blessings, deriving positive meaning and fulfilment from their caregiving journey. This study underscores a need to build more compassionate communities in rural settings of Ghana.

Determinants of hospital readmissions in older people with dementia: a narrative review.

INTRODUCTION: Over 50% of hospitalised older people with dementia have multimorbidity, and are at an increased risk of hospital readmissions within 30 days of their discharge. Between 20-40% of these readmissions may be preventable. Current research focuses on the physical causes of hospital readmissions. However, older people with dementia have additional psychosocial factors that are likely to increase their risk of readmissions. This narrative review aimed to identify psychosocial determinants of hospital readmissions, within the context of known physical factors. METHODS: Electronic databases MEDLINE, EMBASE, CINAHL and PsychInfo were searched from inception until July 2022 and followed up in February 2024. Quantitative and qualitative studies in English including adults aged 65 years and over with dementia, their care workers and informal carers were considered if they investigated hospital readmissions. An inductive approach was adopted to map the determinants of readmissions. Identified themes were described as narrative categories. RESULTS: Seventeen studies including 7,194,878 participants met our inclusion criteria from a total of 6369 articles. Sixteen quantitative studies included observational cohort and randomised controlled trial designs, and one study was qualitative. Ten studies were based in the USA, and one study each from Taiwan, Australia, Canada, Sweden, Japan, Denmark, and The Netherlands. Large hospital and insurance records provided data on over 2 million patients in one American study. Physical determinants included reduced mobility and accumulation of long-term conditions. Psychosocial determinants included inadequate hospital discharge planning, limited interdisciplinary collaboration, socioeconomic inequalities among ethnic minorities, and behavioural and psychological symptoms. Other important psychosocial factors such as loneliness, poverty and mental well-being, were not included in the studies. CONCLUSION: Poorly defined roles and responsibilities of health and social care professionals and poor communication during care transitions, increase the risk of readmission in older people with dementia. These identified psychosocial determinants are likely to significantly contribute to readmissions. However, future research should focus on the understanding of the interaction between a host of psychosocial and physical determinants, and multidisciplinary interventions across care settings to reduce hospital readmissions.

Barriers and facilitators to care for agitation and/or aggression among persons living with dementia in long-term care.

BACKGROUND: Agitation and/or aggression affect up to 60% of persons living with dementia in long-term care (LTC). It can be treated via non-pharmacological and pharmacological interventions, but the former are underused in clinical practice. In the literature, there is currently a lack of understanding of the challenges to caring for agitation and/or aggression among persons living with dementia in LTC. This study assesses what barriers and facilitators across the spectrum of care exist for agitation and/or aggression among people with dementia in LTC across stakeholder groups. METHODS: This was a qualitative study that used semi-structured interviews among persons involved in the care and/or planning of care for people with dementia in LTC. Participants were recruited via purposive and snowball sampling, with the assistance of four owner-operator models. Interviews were guided by the Theoretical Domains Framework and transcribed and analyzed using Framework Analysis. RESULTS: Eighteen interviews were conducted across 5 stakeholder groups. Key identified barriers were a lack of agitation and/or aggression diagnostic measures, limited training for managing agitation and/or aggression in LTC, an overuse of physical and chemical restraints, and an underuse of non-pharmacological interventions. Facilitators included using an interdisciplinary team to deliver care and having competent and trained healthcare providers to administer non-pharmacological interventions. CONCLUSIONS: This study advances care for persons living with dementia in LTC by drawing attention to unique and systemic barriers present across local and national Canadian LTC facilities. Findings will support future implementation research endeavours to eliminate these identified barriers across the spectrum of care, thus improving care outcomes among people with dementia in LTC.

Considering inequities in national dementia strategies: breadth, depth, and scope.

BACKGROUND: Considering that dementia is an international public health priority, several countries have developed national dementia strategies outlining initiatives to address challenges posed by the disease. These strategies aim to improve the care, support, and resources available to meet the needs of persons living with dementia and their care partners and communities. Despite the known impact of social determinants of health on dementia risk, care, and outcomes, it is unclear whether dementia strategies adequately address related inequities. This study aimed to describe whether and how national dementia strategies considered inequities associated with social determinants of health. METHODS: We conducted an environmental scan of the national dementia strategies of countries that are part of the Organisation for Economic Cooperation and Development (OECD). Included strategies had to be accessible in English or French. Sub-national or provincial plans were excluded. We synthesised information on strategies' considerations of inequity through a thematic analysis. RESULTS: Of the 15 dementia strategies that met inclusion criteria, 13 mentioned at least one inequity (M = 2.4, median = 2, range:0-7) related to Race/Ethnicity; Religion; Age; Disability; Sexual Orientation/Gender Identity; Social Class; or Rurality. Age and disability were mentioned most frequently, and religion most infrequently. Eleven strategies included general inequity-focused objectives, while only 5 had specific inequity-focused objectives in the form of tangible percentage changes, deadlines, or allocated budgets for achieving equity-related goals outlined in their strategies. CONCLUSIONS: Understanding if and how countries consider inequities in their dementia strategies enables the development of future strategies that adequately target inequities of concern. While most of the strategies mentioned inequities, few included tangible objectives to reduce them. Countries must not only consider inequities at a surface-level; rather, they must put forth actionable objectives that intend to lessen the impact of inequities in the care of all persons living with dementia.

Factors That Influence Successful Adoption of Real-Time Location Systems for Use in a Dementia Care Setting: Mixed Methods Study.

BACKGROUND: Technology has been identified as a potential solution to alleviate resource gaps and augment care delivery in dementia care settings such as hospitals, long-term care, and retirement homes. There has been an increasing interest in using real-time location systems (RTLS) across health care settings for older adults with dementia, specifically related to the ability to track a person's movement and location. OBJECTIVE: In this study, we aimed to explore the factors that influence the adoption or nonadoption of an RTLS during its implementation in a specialized inpatient dementia unit in a tertiary care rehabilitation hospital. METHODS: The study included data from a brief quantitative survey and interviews from a convenience sample of frontline participants. Our deductive analysis of the interview used the 3 categories of the Fit Between Individuals, Task, and Technology framework as follows: individual and task, individual and technology, and task and technology. The purpose of using this framework was to assess the quality of the fit between technology attributes and an individual's self-reported intentions to adopt RTLS technology. RESULTS: A total of 20 health care providers (HCPs) completed the survey, of which 16 (80%) participated in interviews. Coding and subsequent analysis identified 2 conceptual subthemes in the individual-task fit category, including the identification of the task and the perception that participants were missing at-risk patient events. The task-technology fit category consisted of 3 subthemes, including reorganization of the task, personal control in relation to the task, and efficiency or resource allocation. A total of 4 subthemes were identified in the individual-technology fit category, including privacy and personal agency, trust in the technology, user interfaces, and perceptions of increased safety. CONCLUSIONS: By the end of the study, most of the unit's HCPs were using the tablet app based on their perception of its usefulness, its alignment with their comfort level with technology, and its ability to help them perform job responsibilities. HCPs perceived that they were able to reduce patient search time dramatically, yet any improvements in care were noted to be implied, as this was not measured. There was limited anecdotal evidence of reduced patient risk or adverse events, but greater reported peace of mind for HCPs overseeing patients' activity levels.

A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.

Feasibility and acceptability of NIDUS-professional, a training and support intervention for homecare workers caring for clients living with dementia: a cluster-randomised feasibility trial.

INTRODUCTION: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. METHODS: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). RESULTS: From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. CONCLUSION: A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms.

Exploring nurses' difficulties and strategies when caring for patients with dementia in a neurological ward.

Nurses in neurological wards face numerous challenges when caring for patients with dementia, particularly those who also present other acute illnesses. However, studies focusing on this area are limited. This study aimed to explore the difficulties and strategies in caring for patients with dementia among nurses working in a neurological ward. A qualitative descriptive design was adopted. Twelve nurses from a neurology ward participated in individual semi-structured interviews. The data collected through these interviews were subjected to qualitative content analysis. Two main themes emerged from the analysis: (i) various shortcomings and concerns, which include subthemes: insufficient support, worry about patient safety, inadequate care ability of the caregiver, and insufficient self-competence, and (ii) unique clinical strategies, which include subthemes: cooperate with the caregiver, improve self-competence in dementia care, and employ meticulous resorts. The findings highlighted the nurses' dedication to minimizing patient risks and utilizing available resources as well as stakeholders to provide optimal care. To enhance patient care quality, it is essential to support nurses by addressing care-related barriers, offering continuous education, and establishing care pathways.

Commentary on: physical activity and exercise for mild cognitive impairment and dementia: a collaborative international guideline.

Physical inactivity is an important, but potentially reversible risk factor for dementia and mild cognitive impairment (MCI). There is literature about physical activity and exercise for the prevention and management of dementia and MCI, but this had not been previously synthesized into specific guidelines about this topic. A recent guideline on physical activity and exercise in MCI and dementia was published, authored by several international societies, including lay representatives. In this commentary, we discuss the implications of this guidance for healthcare professionals, caregivers, and lay representatives involved in the care of people with MCI and dementia.The guidelines highlight the importance of physical activity and exercise in cognitively healthy persons and for dementia and MCI, at different stages of these conditions. For primary prevention of dementia, physical activity may be suggested in cognitively healthy persons. In people with MCI, mind-body interventions, such as yoga, have the greatest evidence, whilst the role of physical activity and exercise requires more evidence from high-quality randomized controlled trials. In people living with moderately severe dementia, exercise may be useful for maintaining physical and cognitive function. There are benefits of physical activity and exercise separate from their impact on cognitive outcomes. The guidelines also proposed some questions for future research. In conclusion, there is limited evidence on the beneficial role of physical activity and exercise in preserving cognitive functions in subjects with normal cognition, MCI or dementia. The guidelines support the promotion of physical activity based on the beneficial effects on almost all facets of health.

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.

The impact of a hospital-based special care unit on behavioural and psychological symptoms in older people living with dementia.

BACKGROUND: Hospital patients with behavioural and psychological symptoms of dementia (BPSD) are vulnerable to a range of adverse outcomes. Hospital-based Special Care Units (SCUs) are secure dementia-enabling environments providing specialised gerontological care. Due to a scarcity of research, their value remains unconfirmed. OBJECTIVE: To compare hospital based SCU management of BPSD with standard care. DESIGN: Single-case multiple baseline design. SETTING AND PARTICIPANTS: One-hundred admissions to an 8-bed SCU over 2 years in a large Australian public hospital. METHODS: Repeated measures of BPSD severity were undertaken prospectively by specialist dementia nurses for patients admitted to a general ward (standard care) and transferred to the SCU. Demographic and other clinical data, including diagnoses, medication use, and care-related outcomes were obtained from medical records retrospectively. Analysis used multilevel models to regress BPSD scores onto care-setting outcomes, adjusting for time and other factors. RESULTS: When receiving standard care, patients' BPSD severity was 6.8 (95% CI 6.04-7.64) points higher for aggression, 15.6 (95% CI 13.90-17.42) points higher for the neuropsychiatric inventory, and 5.8 (95% CI 5.14-6.50) points higher for non-aggressive agitation compared to SCU. Patients receiving standard care also experienced increased odds for patient-to-nurse violence (OR 2.61, 95% CI 1.67-4.09), security callouts (OR 5.39 95% CI 3.40-8.52), physical restraint (OR 17.20, 95% CI 7.94-37.25) and antipsychotic administration (OR 3.41, 95% CI 1.60-7.24). CONCLUSION: Clinically significant reductions in BPSD and psychotropic administration were associated with SCU care relative to standard ward care. These results suggest more robust investigation of hospital SCUs, and dementia-enabling design are warranted.

Implementation of the Dementia Isolation Toolkit in long-term care improves awareness but does not reduce moral distress amongst healthcare providers.

BACKGROUND: Healthcare providers may experience moral distress when they are unable to take the ethically or morally appropriate action due to real or perceived constraints in delivering care, and this psychological stressor can negatively impact their mental health, leading to burnout and compassion fatigue. This study describes healthcare providers experiences of moral distress working in long-term care settings during the COVID-19 pandemic and measures self-reported levels of moral distress pre- and post-implementation of the Dementia Isolation Toolkit (DIT), a person-centred care intervention designed for use by healthcare providers to alleviate moral distress. METHODS: Subjective levels of moral distress amongst providers (e.g., managerial, administrative, and front-line employees) working in three long-term care homes was measured pre- and post-implementation of the DIT using the Moral Distress in Dementia Care Survey and semi-structured interviews. Interviews explored participants' experiences of moral distress in the workplace and the perceived impact of the intervention on moral distress. RESULTS: A total of 23 providers between the three long-term care homes participated. Following implementation of the DIT, subjective levels of moral distress measured by the survey did not change. When interviewed, participants reported frequent experiences of moral distress from implementing public health directives, staff shortages, and professional burnout that remained unchanged following implementation. However, in the post-implementation interviews, participants who used the DIT reported improved self-awareness of moral distress and reductions in the experience of moral distress. Participants related this to feeling that the quality of resident care was improved by integrating principals of person-centered care and information gathered from the DIT. CONCLUSIONS: This study highlights the prevalence and exacerbation of moral distress amongst providers during the pandemic and the myriad of systemic factors that contribute to experiences of moral distress in long-term care settings. We report divergent findings with no quantitative improvement in moral distress post-intervention, but evidence from interviews that the DIT may ease some sources of moral distress and improve the perceived quality of care delivered. This study demonstrates that an intervention to support person-centred isolation care in this setting had limited impact on overall moral distress during the COVID-19 pandemic.

Barriers to accessing and receiving mental health care for paid and unpaid carers of older adults.

AIM: The aim of this qualitative study was to explore the barriers and facilitators to accessing and receiving mental health care for paid and unpaid carers of older adults. METHODS: Unpaid and paid carers for older adults in England were interviewed remotely between May and December 2022. Participants were asked about their experiences of mental health needs and support. Reflexive thematic analysis was used to analyse the data. RESULTS: Thirty-seven carers participated (npaid = 9; nunpaid = 28), with the majority caring for a parent with dementia. Thematic analysis generated four themes: lack of healthcare support, social care system failing to enable time off, personal barriers and unsupportive work culture. Healthcare professionals failed to provide any link to mental health services, including when a dementia diagnosis was received. Structural and organisational barriers were evidenced by carers being unable to take time off from their unpaid caring duties or paid caring role, due to an absence of social care support for their relative. CONCLUSIONS: This is the first study to have explored the barriers to mental health care and support for paid and unpaid carers for older adults and suggests that structural, organisational and personal barriers cause severe difficulties in accessing required support to care for older relatives, services users and residents. PUBLIC INVOLVEMENT: Two unpaid carers aided with the development of topic guides, data analysis, interpretation and dissemination. Both were supported and trained to code anonymised transcripts.

Posttraumatic stress disorder in people with dementia: study protocol.

Background: Posttraumatic stress disorder (PTSD) is considered an independent risk factor for dementia. Despite the (clinical) evidence that PTSD is associated with neuropsychiatric symptoms in people with dementia, studies on its prevalence and clinical manifestation are limited, and their quality is affected by the lack of a structured method to diagnose PTSD in this population. The primary aim of the current study is to validate the 'TRAuma and DEmentia' interview as a diagnostic tool for PTSD in people with dementia and to test feasibility of EMDR treatment for people with PTSD and dementia.Methods: This prospective multi-centre study is divided into two parts. In study A, 90 participants with dementia will be included to test the criterion validity, inter-rater reliability and feasibility of the 'TRAuma and DEmentia' interview. In study B, 29 participants with dementia and PTSD will receive eye movement desensitisation and reprocessing therapy by a trained psychologist, and 29 participants with dementia and PTSD will be placed on the waiting list control group.Conclusion: This study aims to improve the diagnostic process of PTSD and to assess the effects of eye movement desensitisation and reprocessing treatment in people with dementia living in Dutch care facilities.Trial registration: NL70479.068.20 / METC 20-063 / OSF registration: https://doi.org/10.17605/OSF.IO/AKW4F.

This study protocol describes a two-part study on posttraumatic stress disorder in people with dementia in Dutch care facilities.The primary aim of the study is to validate the 'TRAuma and DEmentia' interview as a diagnostic tool for posttraumatic stress disorder in people with dementia.This study aims to test the feasibility of an evidence-based treatment for people with dementia and posttraumatic stress disorder in the form of eye movement desensitisation and reprocessing therapy.

How to provide existential and spiritual support to people with mild to moderate dementia and their loved ones. A pilot study.

BACKGROUND: People with mild to moderate dementia and their loved ones may experience strong existential and spiritual challenges due to the disease. People with dementia could therefore benefit greatly from ongoing conversational support. Within the literature and in supportive practice, there are very few tools that help professionals provide this type of support. Professionals may therefore be unaware of, or uncertain of, how support can be given. OBJECTIVE: To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. METHODS: Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework. RESULTS: Five types of approaches, corresponding to the five fundamental polarities within the basic framework, were found to be helpful in alleviating tensions and bolstering strengths. For issues of self-confidence and -worth, an approach of exploring the felt self was developed; for issues of capacity and adaptability, an exploring daily routines approach; for issues of security and loss, an exploring a trinity of needs approach; for issues of burden and enrichment, an exploring memory approach; and for issues of faith and meaning, an exploring ones' predicament approach. When exploring these approaches, participants found sets and sequencing of questions and prompts to be helpful and transformative. CONCLUSION: Professionals can use the Diamond framework to provide conversational support to alleviate tension, enhance meaning and bolster strength for clients and loved ones.