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.

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.

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.

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.

Geographic availability and accessibility of day care services for people with dementia in Ireland.

BACKGROUND: Day care is an important service for many people with dementia and their carers. In Ireland, day care services for people with dementia are delivered by a mix of dementia-specific day care centres as well as generic day care centres that cater for people with dementia to various degrees. In this paper we examine the geographic distribution of day care services for people with dementia relative to potential need. METHODS: Using a national survey of day care centres, we estimate the current availability of day care services for people with dementia in the country. We use geographic information systems (GIS) to map day care provision at regional and sub-regional levels and compare this to the estimated number of people with dementia in local areas. RESULTS: There is significant variation across the country in the existing capacity of day care centres to cater for people with dementia. The number of places per 100 persons with dementia in the community varies from 14.2 to 21.3 across Community Health Organisation areas. We also show that 18% of people with dementia do not live within 15kms of their nearest day care centre. CONCLUSION: Currently, day care centres, in many parts of the country, have limited capacity to provide a service for people with dementia who live in their catchment area. As the number of people with dementia increases, investment in day care centres should be targeted to areas where need is greatest. Our GIS approach provides valuable evidence that can help inform decisions on future resource allocation and service provision in relation to day care.

Predicting admission to long-term care and mortality among community-based, dependent older people in Ireland.

OBJECTIVE: To identify factors that predict admission to long-term care (LTC) and mortality among community-based, dependent older people in Ireland, who were in receipt of formal home support. METHODS: An audit was conducted of all community-dwelling older adults receiving government funded home support during 2017 in the Dublin North Central, Health Service Executive administrative area. Data were extracted from the Common Summary Assessment Report (CSAR), a mandatory form used in the provision of home support. Multiple logistic regression analysis was used to examine the factors associated with admission to LTC and mortality, with the results presented as odds ratios (OR) and 95% confidence intervals. RESULTS: The audit comprised 1597 community-dwelling older adults with a mean age of 83.3 (SD: 7.2) years. The prevalence of transition to LTC and mortality was 8% and 9%, respectively, during the 12-month period. Factors significantly associated with admission to LTC were "cognitive dysfunction" [OR 2.10 (1.41-3.14), P < .001] and the intensity of home support [OR 1.05 (1.01-1.06), P < .003], as measured by weekly formal care hours. Physical dependency and advanced age (aged 95 years +) were significantly associated with mortality in this population (P < .001). CONCLUSION: "Cognitive dysfunction" and intensity of formal home support were associated with transition to LTC, while physical dependency and advanced age were associated with mortality. Investment in personalised, cognitive-specific, services and supports are necessary to keep people with dementia and related cognitive impairments living at home for longer.

An economic analysis of a community-based model for dementia care in Ireland: a balance of care approach.

BACKGROUND: This study examined resource utilization, cost of care, and balance of care relationships for people with dementia on the boundary of community and residential care in Ireland. METHODS: A balance of care approach was used to examine how investment in personalized community care impacted on measured formal and informal costs, care relationships, and potential admission to long-stay care facilities for people with dementia over a three year period. RESULTS: 181 people with dementia on the boundary of community and residential care received additional personalized care supports to help them remain living at home in the community. The estimated average weekly cost of community care for these people, including usual formal care provision, new personalized supports, consumption, and housing, was €418 per week, less than half the cost of potential residential care. However, when informal care is valued using an opportunity cost methodology, the social cost of community-based care increased threefold, rising above the cost of alternative residential care. CONCLUSION: Investment in personalized supports can support family carers to continue caring for longer, thus postponing expensive admission into long-stay care facilities. However, family-care costs remain high, irrespective of the additional supports received.

The cost effectiveness of the SIMPle intervention to improve antimicrobial prescribing for urinary tract infection in primary care.

Background: Antimicrobial resistance is a major public health issue. This study examines the cost effectiveness of the SIMPle (Supporting the Improvement and Management of Prescribing for Urinary Tract Infections (UTI)) intervention to improve antimicrobial prescribing in primary care in Ireland. Methods: An economic evaluation was conducted alongside a cluster randomized controlled trial of 30 general practices and 2560 patients with a diagnosis of UTI. Practices were randomized to the usual practice control or the SIMPle intervention (arm A or B). Data at 6 months follow-up were used to estimate incremental costs, incremental effectiveness in terms of first-line antimicrobial prescribing for UTI and cost effectiveness acceptability curves. Results: The SIMPle intervention was, on average, more costly and more effective than the control. The probability of intervention arm A being cost effective was 0.280, 0.995 and 1.000 at threshold values of €50, €150 and €250 per percentage point increase in first-line antimicrobial prescribing respectively. The equivalent probabilities for intervention arm B were 0.121, 0.863 and 0.985, respectively. Conclusions: The cost effectiveness of the SIMPle intervention depends on the value placed on improving antimicrobial prescribing. Future studies should examine the wider and longer term costs and outcomes of improving antimicrobial prescribing.

Frailty: a costly phenomenon in caring for elders with cognitive impairment.

OBJECTIVES: Dementia draws on a variety of public and private resources. There is increasing pressure to define the cost components in this area to improve resource allocation and accountability. The aim of this study was to characterize frailty in a group of cognitively impaired community-dwelling elders and evaluate its relationship with cost and resource utilization. METHODS: We assessed a cross-sectional, convenient sample of 115 cognitively impaired patients of age >55 years who attended the National Memory Clinic in St James' University Hospital, a Trinity College-affiliated hospital in Dublin, Ireland. Participants had a clinical diagnosis of possible Alzheimer's disease or mild cognitive impairment. Frailty was measured using the biological syndrome model. Formal health and social care costs and daily informal caregiving costs were collected and the total costs of care estimated by applying the appropriate unit cost estimate for each resource activity. Stepwise regression models were constructed to establish the factors associated with increased care costs. RESULTS: Patient dependence, frailty and number of co-morbid illnesses explained 43.3% of the variance in observed daily informal care costs in dementia and cognitively impaired patients. Dependence was the sole factor retained in an optimal model explaining 19% of the variance in formal health and social care costs. CONCLUSION: Frailty retained a strong association with daily informal care costs even in the context of other known risk factors for increasing care costs. Interventions that reduce frailty as well as patient dependence on others may be associated with cost savings.

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 increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia. OBJECTIVES: To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 4 February 2016. 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), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), ClinicalTrials.gov and the World Health Organization ICTRP trial portal to ensure that the searches were as comprehensive and as up-to-date as possible. SELECTION CRITERIA: We searched for randomised (RCT) and non-randomised controlled trials (nRCT), controlled before-and-after studies (CBA) and interrupted time series studies evaluating the impact of palliative care interventions for adults with dementia of any type, staged as advanced dementia by a recognised and validated tool. 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 on the basis of outcomes measured and recorded all outcomes measured in included studies. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. MAIN RESULTS: We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on surrogate decision-makers of nursing home residents with advanced dementia. Data for 90 participants (35% of the original study) met the definition of advanced dementia for this review and were re-analysed for the purposes of the review. In this subset, intervention surrogates had lower scores for decisional conflict measured on the Decisional Conflict Scale (mean difference -0.30, 95% CI -0.61 to 0.01, reduction of 0.3 to 0.4 units considered meaningful) and were more likely than participants in the control group to discuss feeding options with a clinician (RR 1.57, 95% CI 0.93 to 2.64), but imprecision meant that there was significant uncertainty about both results. AUTHORS' CONCLUSIONS: Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.

A comparison of medical records and patient questionnaires as sources for the estimation of costs within research studies and the implications for economic evaluation.

BACKGROUND: Data on health care utilization may be collected using a variety of mechanisms within research studies, each of which may have implications for cost and cost effectiveness. OBJECTIVE: The aim of this observational study is to compare data collected from medical records searches and self-report questionnaires for the cost analysis of a cardiac secondary prevention intervention. METHODS: Secondary data analysis of the Secondary Prevention of Heart Disease in General Practice (SPHERE) randomized controlled trial (RCT). Resource use data for a range of health care services were collected by research nurse searches of medical records and self-report questionnaires and costs of care estimated for each data collection mechanism. A series of statistical analyses were conducted to compare the mean costs for medical records data versus questionnaire data and to conduct incremental analyses for the intervention and control arms in the trial. RESULTS: Data were available to estimate costs for 95% of patients in the intervention and 96% of patients in the control using the medical records data compared to 65% and 66%, respectively, using the questionnaire data. The incremental analysis revealed a statistically significant difference in mean cost of -€796 (95% CI: -1447, -144; P-value: 0.017) for the intervention relative to the control. This compared to no significant difference in mean cost (95% CI: -1446, 860; P-value: 0.619) for the questionnaire analysis. CONCLUSIONS: Our findings illustrate the importance of the choice of health care utilization data collection mechanism for the conduct of economic evaluation alongside randomized trials in primary care. This choice will have implications for the costing methodology employed and potentially, for the cost and cost effectiveness outcomes generated.

Longitudinal costs of caring for people with Alzheimer's disease.

BACKGROUND: There has been an increasing interest in the relationship between severity of disease and costs in the care of people with dementia. Much of the current evidence is based on cross-sectional data, suggesting the need to examine trends over time for this important and growing cohort of the population. METHODS: This paper estimates resource use and costs of care based on longitudinal data for 72 people with dementia in Ireland. Data were collected from the Enhancing Care in Alzheimer's Disease (ECAD) study at two time points: baseline and follow-up, two years later. Patients' dependence on others was measured using the Dependence Scale (DS), while patient function was measured using the Disability Assessment for Dementia (DAD) scale. Univariate and multivariate analysis were used to explore the effects of a range of variables on formal and informal care costs. RESULTS: Total costs of formal and informal care over six months rose from €9,266 (Standard Deviation (SD): 12,947) per patient at baseline to €21,266 (SD: 26,883) at follow-up, two years later. This constituted a statistically significant (p = 0.0014) increase in costs over time, driven primarily by an increase in estimated informal care costs. In the multivariate analysis, a one-point increase in the DS score, that is a one-unit increase in patient's dependence on others, was associated with a 19% increase in total costs (p = 0.0610). CONCLUSIONS: Higher levels of dependence in people with Alzheimer's disease are significantly associated with increased costs of informal care as the disease progresses. Formal care services did not respond to increased dependence in people with dementia, leaving it to families to fill the caring gap, mainly through increased supervision with the progress of disease.

The impact of reminiscence on the quality of life of residents with dementia in long-stay care.

BACKGROUND: There is increasing recognition of the potential use of reminiscence in maintaining or improving the quality of life of people with dementia. Despite being used widely in dementia care, evidence on the effectiveness of reminiscence remains uncertain. AIMS: This study aims to evaluate the effectiveness of a structured education-based reminiscence programme-the Dementia Education Programme Incorporating Reminiscence for Staff-for people with dementia residing in long-stay care settings in Ireland. METHODS: Dementia Education Programme Incorporating Reminiscence for Staff is a two-group, single-blind, cluster randomised trial conducted in long-stay residential care settings in Ireland. The primary outcome was the self-rated quality of life of residents as measured by the Quality of Life-Alzheimer's Disease instrument. RESULTS: Using an intention-to-treat analysis, we found that the estimated effect of the intervention on the quality of life of residents was a non-significant 3.54 (p = 0.1; 95% confidence interval -0.83, 7.90), expressed as the difference in mean improvement between the intervention and control groups. However, the per-protocol analysis yielded a significant effect for the intervention on the quality of life of residents of 5.22 (p = 0.04; 95% confidence interval 0.11, 10.34). CONCLUSIONS: Reminiscence may, in certain circumstances, be an effective care option for people with dementia in long-stay settings with potential to impact positively on the quality of life of residents.

'Seeing me through my memories': a grounded theory study on using reminiscence with people with dementia living in long-term care.

AIMS AND OBJECTIVES: To understand people with dementia, staff and relatives perspectives on reminiscence, its impact on their lives and experience of care and care giving. BACKGROUND: The quality of life of people with dementia living in long-term care is an important question for providers and policymakers. Reminiscence is thought to have potential for increasing resident-staff interaction, thereby contributing to enhanced personhood for people with dementia. Relatively little is known about the effects of reminiscence on people with dementia or staff. DESIGN: This is a grounded theory study. This design was chosen because of its focus on understanding people's behaviour, interaction and response to events. METHODS: In-depth interviews were conducted with residents with dementia (n = 11), relatives (n = 5), healthcare assistants (n = 10), nurses (n = 9) and nurse managers (n = 3). RESULTS: Reminiscence enabled staff to see and know the person beneath the dementia. It acted as … a key revealing the person to staff, enabling them to engage with the person with dementia in a different way. Knowing the person enabled staff to understand (through the lens of the person's past) and sometimes to accommodate the person's current behaviour. CONCLUSION: The theory of 'seeing me (through my memories)' was generated from the data. This theory explains that through reminiscing and engaging with the person with dementia, staff begin to see the person (their personhood) through the mirror of their memories. RELEVANCE TO CLINICAL PRACTICE: This study found that reminiscence enhanced the experience of living in long-term care for residents with dementia and working in long-term care settings for staff.

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.

The effectiveness of a structured education pulmonary rehabilitation programme for improving the health status of people with moderate and severe chronic obstructive pulmonary disease in primary care: the PRINCE cluster randomised trial.

OBJECTIVE: To evaluate the effectiveness of a structured education pulmonary rehabilitation programme on the health status of people with chronic obstructive pulmonary disease (COPD). DESIGN: Two-arm, cluster randomised controlled trial. SETTING: 32 general practices in the Republic of Ireland. PARTICIPANTS: 350 participants with a diagnosis of moderate or severe COPD. INTERVENTION: Experimental group received a structured education pulmonary rehabilitation programme, delivered by the practice nurse and physiotherapist. Control group received usual care. MAIN OUTCOME MEASURE: Health status as measured by the Chronic Respiratory Questionnaire (CRQ) at baseline and at 12-14 weeks postcompletion of the programme. RESULTS: Participants allocated to the intervention group had statistically significant higher mean change total CRQ scores (adjusted mean difference (MD) 1.11, 95% CI 0.35 to 1.87). However, the CI does not exclude a smaller difference than the one that was prespecified as clinically important. Participants allocated to the intervention group also had statistically significant higher mean CRQ Dyspnoea scores after intervention (adjusted MD 0.49, 95% CI 0.20 to 0.78) and CRQ Physical scores (adjusted MD 0.37, 95% CI 0.14 to 0.60). However, CIs for both the CRQ Dyspnoea and CRQ Physical subscales do not exclude smaller differences as prespecified as clinically important. No other statistically significant differences between groups were seen. CONCLUSIONS: A primary care based structured education pulmonary rehabilitation programme is feasible and may increase local accessibility to people with moderate and severe COPD. TRIAL REGISTRATION: ISRCTN52403063.