Countering social exclusion through inclusive homecare provision: Utilising a participatory life-course approach to influence policy.

Homecare models can be effective mechanisms in securing wellbeing and ageing-in-place goals prevalent in health policy agendas. However, the relevance and utility of these models for those living in socially and environmentally insecure conditions has rarely been considered. This is marked by an assumption of in-situ care delivery in private dwellings, and the absence of such groups from homecare development processes. This study aims to harnesses the experiences and preferences of older people in homelessness (OH), older Irish Travellers (OT), and professional stakeholders in an evidence-based co-production of policy recommendations for inclusive homecare provision. The study employed a participatory approach involving the integration of lived experience evidence in a multistakeholder co-production process. Methods comprised: five separate focus groups with OH, OT and service providers (n = 30); two consultative forums involving focus group participants together; and 49 life-course interviews with OH (n = 27) and OT (n = 22) and adults. Findings demonstrate that sizeable gaps in care remain for these groups, and that resource constraints and legislative restrictions prevail for professional stakeholders. Co-produced policy recommendations for inclusive homecare provision based on these experiences and group preferences are presented and discussed.

The association of comorbid dementia with length of stay, cost and mortality among older adults in US acute hospitals: An observational study.

BACKGROUND: Although overall health and social care expenditures among persons with dementia are larger than for other diseases, the resource and cost implications of a comorbid diagnosis of dementia in acute hospitals in the U.S. are largely unknown. We estimate the difference in inpatient outcomes between similar hospital admissions for patients with and without comorbid dementia (CD). METHODS: Inpatient admissions, from the U.S. National Inpatient Sample (2016-2019), were stratified according to hospital characteristics and primary diagnosis (using ICD-10-CM codes), and entropy balanced within strata according to patient and hospital characteristics to create two comparable groups of admissions for patients (aged 65 years or older) with and without CD (a non-primary diagnosis of dementia). Generalized linear regression modeling was then used to estimate differences in length of stay (LOS), cost, absolute mortality risk and number of procedures between these two groups. RESULTS: The final sample consisted of 8,776,417 admissions, comprised of 1,013,879 admissions with and 7,762,538 without CD. CD was associated with on average 0.25 (95 % CI: 0.24-0.25) days longer LOS, 0.4 percentage points (CI: 0.37-0.42) higher absolute mortality risk, $1187 (CI: -1202 to -1171) lower inpatient costs and 0.21 (CI: -0.214 to -0.210) fewer procedures compared to similar patients without CD. CONCLUSION: Comorbid dementia is associated with longer LOS and higher mortality in acute hospitals but lower inpatient costs and fewer procedures. This highlights potential communication issues between dementia patients and hospital staff, with patients struggling to express their needs and staff lacking sufficient dementia training to address communication challenges.

Effect of social prescribing link workers on health outcomes and costs for adults in primary care and community settings: a systematic review.

OBJECTIVES: To establish the evidence base for the effects on health outcomes and costs of social prescribing link workers (non-health or social care professionals who connect people to community resources) for people in community settings focusing on people experiencing multimorbidity and social deprivation. DESIGN: Systematic review and narrative synthesis using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach. DATA SOURCES: Cochrane Database, Cochrane Central Register of Controlled Trials, ClinicalTrials.gov, EU Clinical Trials Register, CINAHL, Embase, Global Health, PubMed/MEDLINE, PsycInfo, LILACS, Web of Science and grey literature were searched up to 31 July 2021. A forward citation search was completed on 9 June 2022. ELIGIBILITY CRITERIA: Controlled trials meeting the Cochrane Effectiveness of Practice and Organisation of Care (EPOC) guidance on eligible study designs assessing the effect of social prescribing link workers for adults in community settings on any outcomes. No language restrictions were applied. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data, evaluated study quality using the Cochrane EPOC risk of bias tool and judged certainty of the evidence. Results were synthesised narratively. RESULTS: Eight studies (n=6500 participants), with five randomised controlled trials at low risk of bias and three controlled before-after studies at high risk of bias, were included. Four included participants experiencing multimorbidity and social deprivation. Four (n=2186) reported no impact on health-related quality of life (HRQoL). Four (n=1924) reported mental health outcomes with three reporting no impact. Two US studies found improved ratings of high-quality care and reduced hospitalisations for people with multimorbidity experiencing deprivation. No cost-effectiveness analyses were identified. The certainty of the evidence was low or very low. CONCLUSIONS: There is an absence of evidence for social prescribing link workers. Policymakers should note this and support evaluation of current programmes before mainstreaming. PROSPERO REGISTRATION NUMBER: CRD42019134737.

Exploratory pilot study on resource allocation along the dementia continuum under constrained and unconstrained budget scenarios.

BACKGROUND: People with dementia and their carers have a wide range of health and social care needs which vary along the dementia continuum. The government response to events and transitions at various stages of the continuum can have a substantial impact on the lived experience of dementia and to resource allocation decision-making. Hearing what practitioners have to say about need at various points of transition along the dementia continuum is very important, especially for the resource allocation process. METHODS: The paper uses an innovative longitudinal balance of care (BoC) methodology to identify the impact of changes along the dementia care continuum for care recipients and practitioners throughout the course of the condition. Participatory workshops were held with five Health and Social Care Professionals (HSCPs) to pilot a mixed methods approach to resource allocation decision-making along the dementia continuum. In these workshops, these practitioner participants were asked to generate a set of services and supports for a person with dementia with changing and evolving needs over a five year period under two budget scenarios: no budget constraint (NBC); and a budget constraint (BC). Participants were asked to recommend services for short, post event, transition periods and for longer steady state periods. RESULTS: Participants were able to allocate different packages of services and supports for different stages of dementia under different budgetary conditions. The total cost for the five year period under the NBC scenario is €200,000 on average, reducing to €133,000 under the BC scenario. Under the BC (NBC) scenarios, participants spent on average 85% (90%) of their budget on community services and 15% (10%) on nursing home services. CONCLUSION: The methodology used in this paper is a valuable complement to cross-sectional BoC studies through its identification of the importance of events, transitions and staging along the dementia care continuum. The desire of participants to keep people with dementia living in their own home is strong, even in the later stages of dementia, as evident by their recommendation to spend €400 per week more on home care provision compared to the alternative residential care, albeit in the absence of any budget constraints.

Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios.

BACKGROUND: People with dementia and their carers have a wide range of health and social care needs. People with dementia, carers and health and social care professionals (HSCPs) all have different perspectives on dementia care. Differences among these groups are important for commissioners of services and for front-line HSCPs. OBJECTIVE: To compare the service recommendations of people with dementia and carers with those of HSCPs, under different budgetary conditions. METHODS: A mixed-methods approach, which builds on the Balance of Care method, was used. Nine workshops were held with 41 participants from three groups: people with dementia, carers and HSCPs. Participants were asked to make decisions on a set of services for case types of dementia under two scenarios: a no budget constraint (NBC) scenario and a budget constraint (BC) scenario. RESULTS: While each group allocated resources in broadly similar overall proportions, important differences in emphasis emerged: (i) people with dementia and carers placed more emphasis on psychosocial supports than HSCPs; (ii) carers put more emphasis on respite opportunities for carers; and (iii) carers identified residential care as the most suitable setting for the person with dementia more frequently than health care professionals. CONCLUSION: Our findings suggest that the importance of psychosocial interventions, including counselling and peer support programmes, are currently underestimated by HSCPs. The provision of in-home respite is highly valued by carers. Even with unconstrained resources, some carers do not judge home care to be a viable option for dementia case types with high-level care needs.

Palliative care interventions in advanced dementia.

BACKGROUND: Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer, but for more than a decade, there have been calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia. This review is an updated version of a review first published in 2016. OBJECTIVES: To assess the effect of palliative care interventions in advanced dementia. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialised Register on 7 October 2020. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), four other databases and two trial registries on 7 October 2020 to ensure that the searches were as comprehensive and as up-to-date as possible. SELECTION CRITERIA: We searched for randomised (RCTs) and non-randomised controlled trials (nRCTs), controlled before-and-after studies and interrupted time series studies evaluating the impact of palliative care interventions for adults with advanced dementia of any type. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies based on outcomes measured. DATA COLLECTION AND ANALYSIS: At least two review authors (SW, EM, PC) independently assessed all potential studies identified in the search against the review inclusion criteria. Two authors independently extracted data from eligible studies. Where appropriate, we estimated pooled treatment effects in a fixed-effect meta-analysis. We assessed the risk of bias of included studies using the Cochrane Risk of Bias tool and the overall certainty of the evidence for each outcome using GRADE. MAIN RESULTS: Nine studies (2122 participants) met the review inclusion criteria. Two studies were individually-randomised RCTs, six were cluster-randomised RCTs and one was a controlled before-and-after study. We conducted two separate comparisons: organisation and delivery of care interventions versus usual care (six studies, 1162 participants) and advance care planning interventions versus usual care (three studies, 960 participants). Two studies were carried out in acute hospitals and seven in nursing homes or long-term care facilities. For both comparisons, we found the included studies to be sufficiently similar to conduct meta-analyses. Changes to the organisation and delivery of care for people with advanced dementia may increase comfort in dying (MD 1.49, 95% CI 0.34 to 2.64; 5 studies, 335 participants; very low certainty evidence). However, the evidence is very uncertain and unlikely to be clinically significant. These changes may also increase the likelihood of having a palliative care plan in place (RR 5.84, 95% CI 1.37 to 25.02; 1 study, 99 participants; I2 = 0%; very low certainty evidence), but again the evidence is very uncertain. Such interventions probably have little effect on the use of non-palliative interventions (RR 1.11, 95% CI 0.71 to 1.72; 2 studies, 292 participants; I2 = 0%; moderate certainty evidence). They may also have little or no effect on documentation of advance directives (RR 1.46, 95% CI 0.50 to 4.25; 2 studies, 112 participants; I2 = 52%; very low certainty evidence), or whether discussions take place about advance care planning (RR 1.08, 95% CI 1.00 to 1.18; 1 study, 193 participants; I2 = 0%; very low certainty evidence) and goals of care (RR 2.36, 95% CI 1.00 to 5.54; 1 study, 13 participants; I2 = 0%; low certainty evidence). No included studies assessed adverse effects. Advance care planning interventions for people with advanced dementia probably increase the documentation of advance directives (RR 1.23, 95% CI 1.07 to 1.41; 2 studies, 384; moderate certainty evidence) and the number of discussions about goals of care (RR 1.33, 95% CI 1.11 to 1.59; 2 studies, 384 participants; moderate certainty evidence). They may also slightly increase concordance with goals of care (RR 1.39, 95% CI 1.08 to 1.79; 1 study, 63 participants; low certainty evidence). On the other hand, they may have little or no effect on perceived symptom management (MD -1.80, 95% CI -6.49 to 2.89; 1 study, 67 participants; very low certainty evidence) or whether advance care planning discussions occur (RR 1.04, 95% CI 0.87 to 1.24; 1 study, 67 participants; low certainty evidence). AUTHORS' CONCLUSIONS: The evidence on palliative care interventions in advanced dementia is limited in quantity and certainty. When compared to usual care, changes to the organisation and delivery of care for people with advanced dementia may lead to improvements in comfort in dying, but the evidence for this was of very low certainty. Advance care planning interventions, compared to usual care, probably increase the documentation of advance directives and the occurrence of discussions about goals of care, and may also increase concordance with goals of care. We did not detect other effects. The uncertainty in the evidence across all outcomes in both comparisons is mainly driven by imprecision of effect estimates and risk of bias in the included studies.

Supporting family carers of people with dementia: A discrete choice experiment of public preferences.

Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision. Support for family carers is, therefore, an important policy topic across many countries. The focus of this paper is on the propensity of citizens to support enhanced care for family carers in Ireland, as demonstrated by their willingness-to-pay additional taxation to fund different combinations of carer support measures, developed through careful and sustained dialogue with multiple stakeholders, especially family carers themselves. We carried out a discrete choice experiment (DCE) with 509 members of the general public in Ireland between January and February 2021. Using mixed logit models, our findings show that citizens value four key attributes: regular caring breaks for family carers (day-care and long-break respite); financial compensation (carer's allowance); and emotional support (carer peer support groups). We also estimated the welfare impact of moving from current provision to enhanced support packages for family carers of people with dementia. The welfare gains accumulate to €1035.80 for the most complete levels of provision across the four support attributes. Overall, respondents in this paper showed empathy and understanding towards family carers of people with dementia through their willingness to contribute to funding additional services and supports.

Innovative methods for involving people with dementia and carers in the policymaking process.

BACKGROUND: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. METHOD: A Policy Café was co-produced with people with dementia using a World Café methodology. A Carer's Assembly was co-produced with caregivers of people with dementia using a citizen's assembly model. RESULTS: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty-eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy-makers to inform their decision making. DISCUSSION: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co-production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy-makers. Policy-makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and carers were involved in study design, data analysis and presentation.

Resource allocation across the dementia continuum: a mixed methods study examining decision making on optimal dementia care among health and social care professionals.

BACKGROUND: The understanding of appropriate or optimal care is particularly important for dementia, characterised by multiple, long-term, changing needs and the increasing expectations of people using services. However, the response of health and social care services is limited by resource constraints in most countries. This study sought to determine the optimal level, mix and cost of services for different dementia case types across the dementia continuum, and to better understand the resource allocation decision making process among health and social care professionals (HSCPs). METHODS: A balance of care framework was applied to the study questions and developed in three ways; firstly by considering optimality across the course of dementia and not just at the margin with residential care; secondly, through the introduction of a fixed budget to reveal constrained optimisation strategies; and thirdly through the use of a mixed methods design whereby qualitative data was collected at workshops using nominal group technique and analysed to obtain a more detailed understanding of the decision-making process. Twenty four HSCPs from a variety of disciplines participated in the resource allocation decision-making exercise. RESULTS: HSCPs differentiated between case type severity; providing 2.6 times more resources to case types with higher level needs than those with lower level needs. When a resource constraint was introduced there was no evidence of any disproportionate rationing of services on the basis of need, i.e. more severe case types were not favoured over less severe case types. However, the fiscal constraint led to a much greater focus on meeting physical and clinical dependency needs through conventional social care provision. There was less emphasis on day care and psychosocial provision when resources were scarcer following the introduction of a fixed budget constraint. CONCLUSIONS: HSCPs completed complex resource allocation exercises for people with dementia, including expected differentiation across case type severity. When rationing was introduced, HSCPs did not discriminate in favour of case types with high levels of need. They did, however, support conventional home care provision over psychosocial care, although participants were still keen to provide some residual cover for the latter, especially for case types that might benefit.

Link workers providing social prescribing and health and social care coordination for people with multimorbidity in socially deprived areas (the LinkMM trial): protocol for a pragmatic randomised controlled trial.

INTRODUCTION: Link workers are non-health or social care professionals based in primary care who support people to develop and achieve a personalised set of health and social goals by engaging with community resources. Link workers have been piloted in areas of deprivation, but there remains insufficient evidence to support their effectiveness. Multimorbidity is increasing in prevalence, but there are limited evidence-based interventions. This paper presents the protocol for a randomised controlled trial (RCT) that will test the effectiveness of link workers based in general practices in deprived areas in improving health outcomes for people with multimorbidity. METHODS AND ANALYSIS: The protocol presents the proposed pragmatic RCT, involving 10 general practitioner (GP) practices and 600 patients. Eligible participants will be community dwelling adults with multimorbidity (≥two chronic conditions) identified as being suitable for referral to a practice-based link worker. Following baseline data collection, the patients will be randomised into intervention group that will meet the link worker over a1-month period, or a 'wait list' control that will receive usual GP care. Primary outcomes are health-related quality of life as assessed by EQ-5D-5L and mental health assessed by Hospital Anxiety and Depression Scale. Secondary outcomes are based on the core outcome set for multimorbidity. Data will be collected at baseline and on intervention completion at 1 month using questionnaires self-completed by participants and GP records. Parallel process and economic analyses will be conducted to explore participants' experiences and examine cost-effectiveness of the link worker intervention. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Irish College of General Practitioners Ethics Committee. The findings will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ISRCTN10287737;Pre-results.

Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland.

INTRODUCTION: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. METHOD: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. FINDINGS: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers' combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non-means-tested carer's allowance, legal recognition, carer's support grant, monthly wage and community awareness programmes. CONCLUSION: Participants ranked day care and non-means-tested carer's allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers' contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.

An analysis of carer burden among family carers of people with and without dementia in Ireland.

OBJECTIVE: Despite the policy relevance of carer burden, limited research focuses on family carers' experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. DESIGN: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. SETTING: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. PARTICIPANTS: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. MEASUREMENTS: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. RESULTS: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (-6.95 ppts and -3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). CONCLUSION: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

Intensive home care supports, informal care and private provision for people with dementia in Ireland.

BACKGROUND: This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. METHODS: The study recruited 42 people with dementia and/or their caregivers, who were living on the boundary of home care and residential care, to an in-depth study on the cost of care. The Resource Utilization in Dementia scale was used to collect data on the utilization of standard formal care and informal care by people with dementia in receipt of an intensive home care package. Information on private out-of-pocket expenditure on care was also collected. Unit costs were assigned and community-based care was compared with public and private residential care alternatives. RESULTS: The average weekly cost of home care, including the intensive home care package, standard formal community care provision, medications, consumption and housing, was estimated at €1127. This is lower than the average weekly cost of public long-stay care facilities (€1526) and around the same as for private nursing home fees in the Dublin region (€1149). When the opportunity cost valuation of informal care is included, the cost of home care is higher than all types of residential care. Adding private care expenditure further inflates the cost of home care. CONCLUSION: Keeping highly dependent people with dementia living at home is not cheap and raises questions about optimal resource allocation on the boundary of home care and residential care. Even with significant public spending on intensive home care packages, family care costs remain high. So too does private out-of-pocket expenditure on care for some people with dementia.

Factors influencing the cost of care and admission to long-term care for people with dementia in Ireland.

OBJECTIVE: To explore the factors associated with the cost of care and admission to long-term care (LTC) for people with dementia living at home in Ireland. METHODS: Data on formal and informal resource use for people with dementia, and their LTC admission, were obtained from a national study of spousal dementia caregivers. Functional status was measured using the Bristol Activities of Daily Living Scale, while behavioural and psychiatric symptoms were evaluated using the Neuropsychiatric Inventory. Multivariable regression analysis was used to model costs and the predictors of LTC admission. RESULTS: Physical and cognitive symptoms were significantly associated with costs. Severely impaired functional ability was associated with a €2,308 increase in mean total 30-day monthly costs. Psychosis was associated with a €335 increase in primary and community 30-day monthly care costs. These factors also make it more likely that a person with dementia is admitted to LTC. Having an older caregiver also increases the risk of admission to LTC, while living in a rural area and having a female caregiver reduce the likelihood of admission. CONCLUSIONS: Dependency matters for the cost of care. Physical and cognitive symptoms, caregiver age and gender, and geographic location are significant predictors of admission to LTC.

Personhood and Dementia Care: A Qualitative Evidence Synthesis of the Perspectives of People With Dementia.

BACKGROUND AND OBJECTIVES: Personhood is considered the cornerstone of person-centered care for people with dementia. However, there is little research on personhood in dementia care from the perspective of the person with dementia themselves. This article presents a qualitative evidence synthesis of the experiences and perceptions of people with dementia on personhood in dementia care. RESEARCH DESIGN AND METHODS: A systematic search of nine databases was conducted. In addition to initial screening, CART analysis was used to determine the most relevant papers. Thematic synthesis was conducted on 20 papers. The CASP tool was used to examine the quality of the included papers. GRADE CERQual analysis examined confidence in the review findings. RESULTS: People with dementia experience many changes due to the disease and the experience of being cared for in different settings. Personhood is affirmed through personal interactions with family, friends, other care recipients, and formal caregivers, as well as through continued engagement in social and occupational roles. DISCUSSION AND IMPLICATIONS: The review has important implications for practice, regulation, and policy. The person and their personhood should be protected rather than undermined, and relationships should be enhanced not diminished by the formal care process. The focus should be on creating and amplifying opportunities for people with dementia to affirm the self through interactions with others and engaging in occupational and social roles to ensure continuity of self.

Protocol for a mixed methods process evaluation of the LinkMM randomised controlled trial "Use of link workers to provide social prescribing and health and social care coordination for people with complex multimorbidity in socially deprived areas".

Background  Multimorbidity, defined as two or more chronic conditions is increasing in prevalence and is associated with increased health care use, fragmented care and poorer health outcomes. Link workers are non-health or social care professionals who support people to connect with resources in their community to improve their well-being, a process commonly referred to as social prescribing. The use of link workers in primary care may be an effective intervention in helping those with long-term conditions manage their illness and improve health and well-being, but the evidence base in limited. The LinkMM study is a randomised controlled trial of the effectiveness of link workers based in primary care, providing social prescribing and health and social care coordination for people with multimorbidity. The aim of the LinkMM process evaluation is to investigate the implementation of the link worker intervention, mechanisms of impact and influence of the specific context on these, as per the Medical Research Council framework, using quantitative and qualitative methods. Methods  Quantitative data will be gathered from a number of sources including researcher logbooks, participant baseline questionnaires, client management database, and will be analysed using descriptive statistics. Semi structured interviews with participants will investigate their experiences of the intervention. Interviews with link workers, practices and community stakeholders will explore how the intervention was implemented and barriers and facilitators to this. Thematic analysis of interview transcripts will be conducted. Discussion  The process evaluation of the LinkMM trial will provide important information allowing a more in-depth understanding of how the intervention worked and lessons for future wider scale implementation.

The feasibility of a Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: protocol for a non-randomised feasibility study.

BACKGROUND: A dementia diagnosis can prevent people from participating in society, leading to a further decline in cognitive, social and physical health. However, it may be possible for people with dementia to continue to live meaningful lives and continue to participate actively in society if a supportive psychosocial environment exists. Resilience theory, which focuses on strengthening personal attributes and external assets in the face of serious challenges, may provide a scaffold on which an inclusive multifaceted psychosocial supportive environment can be built. This protocol paper describes a study to determine the feasibility of conducting a multifaceted complex resilience building psychosocial intervention for people with dementia and their caregivers living in the community. METHODS: This is a non-randomised feasibility study. Ten participants with dementia and their primary caregivers living in the community will be recruited and receive the CREST intervention. The intervention provides (a) a 7-week cognitive stimulation programme followed by an 8-week physical exercise programme for people with dementia and (b) a 6-week educational programme for caregivers. Members of the wider community will be invited to a dementia awareness programme and GP practices to a dementia training workshop. Trained professionals will deliver all intervention components. Outcomes will assess the feasibility and acceptability of all study processes. The feasibility and acceptability of a range of outcomes to be collected in a future definitive trial, including economic measurements, will also be explored. Finally, social marketing will be used to map a route toward stigma change in dementia for use in a subsequent trial. Quantitative feasibility outcome assessments will be completed at baseline and after completion of the 15-week intervention while qualitative data will be collected at recruitment, baseline, during and post-intervention delivery. CONCLUSION: This feasibility study will provide evidence regarding the feasibility and acceptability of a comprehensive multifaceted psychosocial intervention programme for people with dementia and their caregivers (CREST). The results will be used to inform the development and implementation of a subsequent RCT, should the findings support feasibility. TRIAL REGISTRATION: ISRCTN25294519 Retrospectively registered 07.10.2019.

Family carers' perspectives of the Alzheimer Café in Ireland.

Background: The Alzheimer Café is a psychosocial intervention shown to have benefits for family carers of people with dementia. Family carers experience a period of change across all aspects of their lives following the dementia diagnosis, and require new skills and tools to navigate these new landscapes. The objective of this research was to investigate family carers' perspectives of the Alzheimer Café in Ireland, and explore how attendance may translate into broader benefits in their lives. This paper also provides an overview of Alzheimer Café models, which exist internationally. Methods: Semi-structured interviews were conducted with nine family carers of people with dementia who were currently attending or had attended an Alzheimer Café in the preceding six months. The research was conducted in three Alzheimer Cafés in Ireland. Data analysis was conducted using Braun and Clarke's six step thematic analysis framework. Results: Community, atmosphere, activity and information were described as core features of the Alzheimer Café in Ireland. The Alzheimer Café was described as a community with a good atmosphere encompassing emotional support, friendship, equality and inclusion. Family carer also highlighted Alzheimer Cafés could potentially facilitate wider community awareness and engagement. The Alzheimer Café was shown to provide an activity which facilitated relationship building within care dyads as well as with other attendees. Several information streams were identified, including guest speaker input, attendees' shared experiences, and specific advice from healthcare professionals. Conclusion: The Alzheimer Café offers strong personal support to family carers of people with dementia. Our findings suggest that Alzheimer Cafés can build family carers' capacity to manage new social, environmental and cultural challenges associated with dementia. While it is important the Alzheimer Café is enjoyable, has useful information and is supportive, it is equally important that these features generate sustained improvements for family carers external to the Alzheimer Café.

Positive health among older Traveller and older homeless adults: A scoping review of life-course and structural determinants.

Concepts related to positive health in later life are increasingly prevalent within community-based health and social care policy. With a greater emphasis on inclusion health for older populations, there is a critical need to understand the determinants of such states for those most at risk of societal disadvantage. Focusing on two such groups, the aim of this article is to synthesise international research on the life-course and structural determinants of positive subjective health for older homeless people and older Irish Travellers. Two scoping reviews were conducted (one for each group) to capture state-of-the art knowledge published from 1998 to 2020. The reviews were completed from July to December 2018, and repeated from March to April 2020. Thirty-eight publications were included in the final sample (older Travellers: 10 sources; older homeless: 28 sources). Specific life-course and structural factors were evident for both groups, as well as commonalities with respect to: accumulated exclusions; complexity of needs; accommodation adequacy/stability and independence and resilience. Research gaps are identified concerning: lack of conceptualisation of positive health; the application of life-course perspectives and the absence of an environmental gerontological analysis of the situations of both groups.

Remembering people with dementia during the COVID-19 crisis.

This letter argues that we need to pay particular attention to people with dementia during this difficult time of the COVID-19 pandemic. Social distancing rules and cocooning for people aged 70 years and over are now in place in Ireland to slow down the rate of infection and protect vulnerable older people.  This letter argues that we need, more than ever, to assert the personhood of people with dementia at this difficult time. That means more person-centred care and practical support structures for family carers to allow them to continue to care at home in a safe and life-enhancing way. New public broadcasting initiatives could create information and communication channels for people with dementia and their carers, as well as demonstrating empathy and solidarity with their predicament. Government, the Department of Health, the HSE and the voluntary sector have risen to the challenge of COVID-19 in all sectors of society. So too have ordinary citizens. Now we need to unite even more to create an unyielding commitment and adherence to the principles of  decency, justice  and equity in the allocation of scarce  health and social care resources. By doing this, we will demonstrate our caring potential and capacity in a way that reflects our shared humanity, not only in the current crisis, but into the future.