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Background: For care planning and support, under-detection and late diagnosis of Alzheimer’s disease (AD) is a great challenge. Models of Patient-Engagement for Alzheimer’s Disease (MOPEAD) is an EU-funded project aiming at testing different strategies to improve this situation. Objective: To make a cost-consequence analysis of MOPEAD. Methods: Four screening strategies were tested in five countries (Germany, the Netherlands, Slovenia, Spain, and Sweden): 1) a web-approach; 2) Open-House initiative; 3) in primary care; and 4) by diabetes specialists. Persons-at-risk of AD in all strategies were offered referral to a hospital-based specialist. The primary health-economic outcome was the cost per true-positive case (TP) of AD from the screened population. Results: Of 2,847 screened persons, 1,121 screened positive (39%), 402 were evaluated at memory clinics (14%), and 236 got an AD diagnosis (8%). The cost per TP of those screened was €3,115 with the web-approach, €2,722 with the Open-House, €1,530 in primary care, and €1,190 by diabetes specialists. Sensitivity analyses that more likely reflect the real-world situation confirmed the results. The number-needed-to-screen was 30 with the web-approach, 8 with the Open-House and primary care, and 6 with the diabetes specialists. There were country differences in terms of screening rates, referrals to memory clinics, staff-types involved, and costs per TP. Conclusion: In primary care and by the diabetes specialist, the costs per TP/screened population were lowest, but the capacity of such settings to identify cases with AD-risk must be discussed. Hence new diagnostic strategies such as web-solutions and Open-House initiatives may be valuable after modifications.

We investigated the effect of a multidomain lifestyle intervention on the risk of dementia estimated using the validated CAIDE risk score (post-hoc analysis). The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) is a 2-year randomized controlled trial among 1,260 at-risk older adults (60–77 years). Difference in the estimated mean change in CAIDE score at 2 years in the intervention compared to the control group was –0.16 (95 %CI –0.31 to 0.00) (p = 0.013), corresponding to a relative dementia risk reduction between 6.04–6.50%. This could be interpreted as a reflection of the prevention potential of the intervention.

Although Alzheimer´s Disease (AD) and other dementias cause devastating conditions for those affected and their families, and although more than 50 million people globally are suffering of AD and o...

INTRODUCTION: Loss to follow-up in dementia studies is common and related to cognition, which worsens over time. We aimed to (1) describe dropout and missing cognitive data in the Swedish dementia registry, SveDem; (2) identify factors associated with dropout; and (3) estimate propensity scores and use them to adjust for dropout.METHODS: Longitudinal cognitive data were obtained from 53,880 persons from the SveDem national quality dementia registry. Inverse probability of censoring weights (IPCWs) were estimated using a logistic regression model on dropout.RESULTS: The mean annualized rate of change in Mini-Mental State Examination (MMSE) in those with a low MMSE (0 to 10) was likely underestimated in the complete case analysis (+1.5 points/year) versus the IPCW analysis (-0.3 points/year).DISCUSSION: Handling dropout by IPCWs resulted in plausible estimates of cognitive decline. This method is likely of value to adjust for biased dropout in longitudinal cohorts of dementia.

IntroductionProfiles of high risk for future dementia are well understood and are likely to concern mostly those in low-income and middle-income countries and people at greater disadvantage in high-income countries. Approximately 30%–40% of dementia cases have been estimated to be attributed to modifiable risk factors, including hypertension, smoking and sedentary lifestyle. Tailored interventions targeting these risk factors can potentially prevent or delay the onset of dementia. Mobile health (mHealth) improves accessibility of such prevention strategies in hard-to-reach populations while at the same time tailoring such approaches. In the current study, we will investigate the effectiveness and implementation of a coach-supported mHealth intervention, targeting dementia risk factors, to reduce dementia risk.Methods and analysisThe prevention of dementia using mobile phone applications (PRODEMOS) randomised controlled trial will follow an effectiveness–implementation hybrid design, taking place in the UK and China. People are eligible if they are 55–75 years old, of low socioeconomic status (UK) or from the general population (China); have ≥2 dementia risk factors; and own a smartphone. 2400 participants will be randomised to either a coach-supported, interactive mHealth platform, facilitating self-management of dementia risk factors, or a static control platform. The intervention and follow-up period will be 18 months. The primary effectiveness outcome is change in the previously validated Cardiovascular Risk Factors, Ageing and Incidence of Dementia dementia risk score. The main secondary outcomes include improvement of individual risk factors and cost-effectiveness. Implementation outcomes include acceptability, adoption, feasibility and sustainability of the intervention.Ethics and disseminationThe PRODEMOS trial is sponsored in the UK by the University of Cambridge and is granted ethical approval by the London—Brighton and Sussex Research Ethics Committee (reference: 20/LO/01440). In China, the trial is approved by the medical ethics committees of Capital Medical University, Beijing Tiantan Hospital, Beijing Geriatric Hospital, Chinese People’s Liberation Army General Hospital, Taishan Medical University and Xuanwu Hospital. Results will be published in a peer-reviewed journal.Trial registration numberISRCTN15986016.

Objective:To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden.Design:Prospective longitudinal European observational study: post-hoc analysis.Setting:Clinic.Participants:Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers.Measurements:Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models).Results:Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden.Conclusions:Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.

Introduction: General practitioners (GPs) play a key role in early identification of dementia, yet diagnosis is often missed or delayed in primary care. As part of the multinational Models of Patient Engagement for Alzheimer’s Disease project, we assess GPs’ attitude toward early and pre-dementia diagnosis of AD and explore barriers to early diagnosis. Methods: Our survey covered general attitude toward early diagnosis, diagnostic procedures, resources, and opinion on present and future treatment options across five European countries. Results: In total 343 GPs completed the survey; 74% of GPs indicated that an early diagnosis is valuable. There were country-specific differences in GPs’ perceptions of reimbursement and time available for the patient. If a drug were available to slow down the progression of AD, 59% of the GPs would change their implementation of early diagnosis. Discussion: Our findings provide insight into GPs’ attitudes by exploring differences in perception and management of early diagnosis. (Less)

BACKGROUND: It remains unclear whether the increased focus on improving healthcare and providing appropriate care for people with dementia has affected mortality.OBJECTIVE: To assess survival and to conduct a time-trend analysis of annual mortality rate ratios (MRR) of dementia based on healthcare data from an entire national population.METHODS: We assessed survival and annual MRR in all residents of Denmark ≥65 years from 1996--2015 using longitudinal registry data on dementia status and demographics. For comparison, mortality and survival were calculated for acute ischemic heart disease (IHD) and cancer.RESULTS: The population comprised 1,999,366 people (17,541,315 person years). There were 165,716 people (529,629 person years) registered with dementia, 131,321 of whom died. From 1996-2015, the age-adjusted MRR for dementia declined (women: 2.76 to 2.05; men: 3.10 to 1.99) at a similar rate to elderly people without dementia. The sex-, age-, and calendar-year-adjusted MRR was 2.91 (95%CI: 2.90-2.93) for people with dementia. MRR declined significantly more for acute IHD and cancer. In people with dementia, the five-year survival for most age-groups was at a similar level or lower as that for acute IHD and cancer.CONCLUSION: Although mortality rates declined over the 20-year period, MRR stayed higher for people with dementia, while the MRR gap, compared with elderly people without dementia, remained unchanged. For the comparison, during the same period, the MRR gap narrowed between people with and without acute IHD and cancer. Consequently, initiatives for improving health and decreasing mortality in dementia are still highly relevant.

Objectives Interindividual response variability to nutrition and exercise interventions is extensive in older adults. A group of nursing home (NH) residents participated in a combined intervention. The objective of this post-hoc analysis was to identify factors associated with intervention response measured by change in physical function and body composition. Design Post-hoc analyses in the Older Person's Exercise and Nutrition study, a 2-arm randomized trial. The primary outcomes were 30-second Chair Stand Test and composite scores combining physical function and fat-free mass. A secondary outcome was intervention adherence. A 12-week intervention of sit-to-stand exercises and protein-rich nutritional supplements did not improve chair-stand capacity vs control on intention-to-treat basis. Setting and Participants Residents ≥75 years of age from dementia and somatic units in eight NHs in Sweden. Methods Logistic regressions were performed to define factors associated with response (maintenance/improvement) or nonresponse (deterioration) in 30-second Chair Stand Test, and with intervention adherence. Linear regressions were performed to explore factors associated with response in composite scores. Results Mean age of participants (n = 52 intervention, n = 49 control) was 85.8 years. Sarcopenia was occurring in 74%. Sarcopenia at baseline (P = .005) and high adherence to nutritional supplements (P = .002) increased the odds of response. Higher independence in daily activities increased the odds of adherence to sit-to-stand exercises (P = .027) and the combined intervention (P = .020). Allocation to the intervention group and higher self-perceived health were associated with higher composite scores. Conclusions and Implications NH residents with baseline sarcopenia, better self-perceived health, and high adherence to nutritional supplements benefitted most from a combined nutrition and exercise intervention regarding chair-stand capacity and composite scores of function and fat-free mass. Adherence was related to higher grade of independence. Understanding factors associated with response and adherence to an intervention will help target susceptible residents in most need of support and to optimize the outcome.

Objectives: To study the prevalence and overlap between malnutrition, sarcopenia and frailty in a selected group of nursing home (NH) residents. Design: Cross-sectional descriptive study. Setting: Nursing homes (NH). Participants: 92 residents taking part in an exercise and oral nutritional supplementation study; >75 years old, able to rise from a seated position, body mass index ≤30 kg/m2 and not receiving protein-rich oral nutritional supplements. Measurements: The MNA-SF and Global Leadership Initiative on Malnutrition (GLIM) criteria were used for screening and diagnosis of malnutrition (moderate or severe), respectively. Sarcopenia risk was assessed by the SARC-F Questionnaire (0-10p; ≥4=increased risk), and for diagnosis the European Working Group of Sarcopenia in Older People (EWGSOP2) criteria was used. To screen for frailty the FRAIL Questionnaire (0-5p; 1-2p indicating pre-frailty, and >3p indicating frailty), was employed. Results: Average age was 86 years; 62% were women. MNA-SF showed that 30 (33%) people were at risk or malnourished. The GLIM criteria verified malnutrition in 16 (17%) subjects. One third (n=33) was at risk for sarcopenia by SARC-F. Twenty-seven (29%) subjects displayed confirmed sarcopenic according to EWGSOP2. Around 50% (n=47) was assessed as pre-frail or frail. Six people (7%) suffered from all three conditions. Another five (5%) of the residents were simultaneously malnourished and sarcopenic, but not frail, while frailty coexisted with sarcopenia in 10% (n=9) of non-malnourished residents. Twenty-nine (32%) residents were neither malnourished, sarcopenic nor frail. Conclusions: In a group of selected NH residents a majority was either (pre)frail (51%), sarcopenic (29%) or malnourished (17%). There were considerable overlaps between the three conditions.

Purpose The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries. Methods Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project. Results The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer–patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time. Conclusion The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

ObjectivesIn the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access.MethodsA total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks.ResultsThe most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender.ConclusionThe Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care.

Objectives: Nursing home (NH) residents are often undernourished and physically inactive, which contributes to sarcopenia and frailty. The Older Person's Exercise and Nutrition Study aimed to investigate the effects of sit-to-stand exercises (STS) integrated into daily care, combined with a protein-rich oral nutritional supplement (ONS), on physical function, nutritional status, body composition, health-related quality of life, and resource use. Design: Residents in 8 NHs were randomized by NH units into an intervention group (IG) or a control group (CG) (n = 60/group). The IG was a combination of STS (4 times/day) and ONS (2 bottles/day providing 600 kcal and 36 g protein) for 12 weeks. Setting and Participants: The participants resided in NH units (dementia and somatic care), were >= 75 years of age, and able to rise from a seated position. Methods: The 30-second Chair Stand Test was the primary outcome. Secondary outcomes were balance, walking speed, dependence in activities of daily living, nutritional status and body composition, health-related quality of life, and resource use. Results: Altogether, 102 residents (age 86 +/- 5 years, 62% female) completed the study. No improvement in the physical function assessments was observed in the IG, whereas body weight increased significantly (2.05 +/- 3.5 kg, P = .013) vs the CG. Twenty-one (of 52) participants with high adherence to the intervention (ie, at least 40% compliance to the combined intervention) increased their fat free mass (2.12 kg (0.13, 4.26 interquartile range), P = .007 vs CG). Logistic regression analyses indicated that the odds ratio for maintained/improved 30-second Chair Stand Test was 3.5 (confidence interval 1.1, 10.9, P = .034) among the participants with high adherence compared with the CG. Conclusions/Implications: Twelve-week intervention of daily STS combined with ONS in NH residents did not improve physical function, but increased body weight. Subgroup analyses indicated that high adherence to the combined intervention was associated with maintained or improved physical function and a gain of fat free mass. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Background Hypertrophic cardiomyopathy is a heterogeneous disease in which an implantable cardioverter defibrillator (ICD) effectively prevents sudden cardiac death in at-risk individuals. Nevertheless, the cost-effectiveness of ICDs in this specific patient group has not been evaluated. Methods A Markov cohort model was constructed to simulate the course of identified adult persons with hypertrophic cardiomyopathy with and without an ICD over the course of 12 years based on Swedish disease-specific unit costs. The age distribution was based on empirical data from the nationwide cohort of HCM patients with ICDs (mean age at the time of implant was 51.8 years). The outcomes were costs per saved life and cost per gained quality adjusted life year (QALY). Results Of 1000 simulated patients, 402 lives were saved after 12 years with an ICD at a cost of 646,000 Swedish krona (SEK), which corresponds to 57,118 Euro per saved life from the health care sector viewpoint. The cost per gained QALY (the incremental cost effectiveness ratio (ICER)) was 171,000 SEK (15,119 Euro). From a societal viewpoint, including effects on productivity losses, the use of an ICD was absolutely dominant (both cheaper and better, and thus an ICER is of no interest). Both the one-way sensitivity analyses and the probabilistic sensitivity analyses supported the findings in the base option. Conclusion For identified patients with hypertrophic cardiomyopathy deemed at high risk of sudden cardiac death, the use of an ICD is extremely cost effective, both in terms of the cost for saved lives and gained QALY.

Objective We aimed to quantify the personal economic burden of dementia care in Japan according to residence type. Methods A cross-sectional online survey was conducted on 3841 caregivers of people with dementia. An opportunity cost approach was used to calculate informal care costs. All costs and the observed/expected (OE) ratio of costs were adjusted using patient sex, age, and care-needs levels, and compared among the residence types. Results The mean daily informal care time was 8.2 hours, and the mean monthly informal care costs for community-dwelling people with dementia were US$1559. The OE ratio for informal care costs in community-dwelling patients was higher than in institutionalized patients. Conclusion The inclusion of informal care costs reduced the differences in total personal costs among the residence types. The economic burden of informal care should be considered when quantifying dementia care costs.

Introduction The e4 allele of the apolipoprotein E ( APOE ) gene is a prominent risk factor for Alzheimer's disease (AD), but its implication in other dementias is less well studied. Methods We used a data set on 2858 subjects (1098 AD, 260 vascular dementia [VaD], 145 mixed AD and VaD, 90 other dementia diagnoses, and 1265 controls) to examine the association of APOE polymorphisms with clinical dementia diagnoses, biomarker profiles, and longevity. Results The e4 allele was associated with reduced longevity as e4 versus e3 homozygotes lived on average 2.6 years shorter ( P = .006). In AD, e4 carriers lived 1.0 years shorter than noncarriers ( P = .028). The e4 allele was more prevalent in AD, mixed AD and VaD, and VaD patients compared to controls, but not in other dementia disorders. Discussion The APOE e4 allele is influential in AD but might also be of importance in VaD and in mixed AD and VaD, diseases in which concomitant AD pathology is common.

Background Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. Objective To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. Methods Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. Results Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. Conclusion Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL.The perspectives of people with dementia are informative when identifying needs.

Background: Diagnostic research criteria for Alzheimer's disease support the use of biomarkers in the cerebrospinal fluid (CSF) to improve the accuracy of the prognosis regarding progression to dementia for people with mild cognitive impairment (MCI).Objective: The aim of this study was to estimate the potential incremental cost-effectiveness ratio of adding CSF biomarker testing to the standard diagnostic workup to determine the prognosis for patients with MCI.Methods: In an early technology assessment, a mathematical simulation model was built, using available evidence on added prognostic value as well as expert opinion to estimate the incremental costs and quality-adjusted life years (QALYs) of 20,000 virtual MCI patients with (intervention strategy) and without (control strategy) relying on CSF, from a health-care sector perspective and with a 5-year time horizon.Results: Adding the CSF test improved the accuracy of prognosis by 11%. This resulted in an average QALY gain of 0.046 and (sic)432 additional costs per patient, representing an incremental cost-effectiveness ratio of (sic)9,416.Conclusion: The results show the potential of CSF biomarkers in current practice from a health-economics perspective. This result was, however, marked by a high degree of uncertainty, and empirical research is required into the impact of a prognosis on worrying, false-positive/negative prognosis, and stigmatization.

Background/Aims: We assessed whether cognitive and functional decline in community-dwelling patients with mild Alzheimer disease (AD) dementia were associated with increased societal costs and caregiver burden and time outcomes. Methods: Cognitive decline was defined as a ≥3-point reduction in the Mini-Mental State Examination and functional decline as a decrease in the ability to perform one or more basic items of the Alzheimer’s Disease Cooperative Study Activities of Daily Living Inventory (ADCS-ADL) or ≥20% of instrumental ADL items. Total societal costs were estimated from resource use and caregiver hours using 2010 costs. Caregiver burden was assessed using the Zarit Burden Interview (ZBI); caregiver supervision and total hours were collected. Results: Of 566 patients with mild AD enrolled in the GERAS study, 494 were suitable for the current analysis. Mean monthly total societal costs were greater for patients showing functional (+61%) or cognitive decline (+27%) compared with those without decline. In relation to a typical mean monthly cost of approximately EUR 1,400 at baseline, this translated into increases over 18 months to EUR 2,254 and 1,778 for patients with functional and cognitive decline, respectively. The number of patients requiring supervision doubled among patients showing functional or cognitive decline compared with those not showing decline, while caregiver total time increased by 70 and 33%, respectively and ZBI total score by 5.3 and 3.4 points, respectively. Conclusion: Cognitive and, more notably, functional decline were associated with increases in costs and caregiver outcomes in patients with mild AD dementia.

Available data and models for the health-economic evaluation of treatment in Alzheimer's disease (AD) have limitations causing uncertainty to decision makers. Forthcoming treatment strategies in preclinical or early AD warrant an update on the challenges associated with their economic evaluation. The perspectives of the co-authors were complemented with a targeted review of literature discussing methodological issues and data gaps in AD health-economic modelling. The methods and data available to translate treatment efficacy in early disease into long-term outcomes of relevance to policy makers and payers are limited. Current long-term large-scale data accurately representing the continuous, multifaceted, and heterogeneous disease process are missing. The potential effect of disease-modifying treatment on key long-term outcomes such as institutionalization and death is uncertain but may have great effect on cost-effectiveness. Future research should give priority to collaborative efforts to access better data on the natural progression of AD and its association with key long-term outcomes.

OBJECTIVES: This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles.DESIGN: A longitudinal international cohort study.SETTING AND PARTICIPANTS: The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis.METHODS: A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles.RESULTS: Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile.CONCLUSIONS AND IMPLICATIONS: In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people.

ObjectiveThe purpose of this study was to clarify the microlevel determinants of the economic burden of dementia care at home in Japanese community settings by classifying them into subgroups of factors related to people with dementia and their caregivers.DesignA cross-sectional online survey.Participants4313 panels of Japanese research company who fulfilled the following criteria: (1) aged 30 years or older, (2) non-professional caregiver of someone with dementia, (3) caring for only one person with dementia and (4) having no conflicts of interest with advertising or marketing research entities.Primary outcome measuresInformal care costs and out-of-pocket payments for long-term care (LTC) services.ResultsFrom 4313 respondents, only 1383 caregivers in community-settings were included in this analysis. We conducted a χ² automatic interaction detection analysis to identify the factors related to each cost (informal care costs and out-of-pocket payments for LTC services) divided into subcategories. In the resultant classifications, informal care cost was mainly related to caregivers’ employment status. When caregivers acquired family care leave, informal care costs were the highest. On the other hand, out-of-pocket payments for LTC were related to care-need levels and family economic status. Activities of Daily Living and Instrumental Activities of Daily Living functions such as bathing, toileting and cleaning were related to all costs.ConclusionThis study clarified the difference in dementia care costs between classified subgroups by considering the combination of the situations of both people with dementia and their caregivers. Informal care costs were related to caregivers’ employment and cohabitation status rather to the situations of people with dementia. On the other hand, out-of-pocket payments for LTC services were related to care-need levels and family economic status. These classifications will be useful in understanding which situation represents a greater economic burden and helpful in improving the sustainability of the dementia care system in Japan.

Improving (feelings of) safety is an important goal of many health systems, especially in the context of recurrent threats of pandemics, and natural disasters. Measures to improve safety should be cost-effective, raising the issue of how to value safety. This is a complex task due to the intangible nature of safety. We aim to synthesize the current empirical literature on the evaluation of safety to gain insights into current methodological practices. After a thorough literature search in two databases for papers from the fields of life sciences, social sciences, physical sciences and health sciences that empirically measure the value of increasing safety, 33 papers were found and summarized. The focus of the research was to investigate the methodologies used. Attention was also paid to theoretical papers and the methodological issues they present, and the relationship between safety and three categories of covariate results: individual characteristics, individual relationship with risk, and study design. The field of research in which the most papers were found was environmental economics, followed by transportation and health. There appeared to be two main methods for valuating safety: Contingent Valuation and Discrete Choice Experiments, within which there were also differences—for example the use of open or dichotomous choice questions. Overall this paper finds that there still appears to be a long way ahead before consensus can be attained about a standardised methodology for valuating safety. Safety valuation research would benefit from learning from previous experience and the development of more standardised methods.

Objectives: To describe the use of social and medical care services in a community-dwelling older population from Stockholm, Sweden, using an integrated clinical and functional assessment tool. Design: Study based on data from the longitudinal community-based Swedish National Study on Aging and Care in Kungsholmen. Setting and Participants: Random sample of people >65 years of age living in the community in central Stockholm between March 2001 and June 2004 (N = 2368). Measures: Health status was measured with a health assessment tool (HAT), which combines 5 indicators (gait speed, cognitive function, chronic multimorbidity, mild disability, severe disability) collected during Swedish National Study on Aging and Care in Kungsholmen clinical examinations. The amount of formal and informal social care was self-reported in hours per month and recorded by trained nurses at baseline and the 3-year follow-up for those >= 78 years of age at baseline. Data on hospital admissions, 30-day readmissions, days spent in the hospital, primary care visits, and specialist visits were obtained from Stockholm County Council registers (2001-2007). Results: At baseline, 10% of the sample received formal social care and 11% received informal care. Annually between baseline and the 3-year follow-up, 15% were admitted to the hospital, 5% were readmitted, 78% visited a specialist, and 89% visited primary care. Those with the best HAT scores received 0.02 hours/month of formal care; those with the worst, 34 h/mo. The corresponding numbers for other variables were 0.02 vs 73 h/mo of informal care, 2 vs 11 hospital admissions per 10 persons/year, 44 vs 226 hospital days per 10 persons/y, 0.4 vs 2 30-day readmissions per 10 persons/y, 37 vs 78 specialist visits per 10 persons/y, and 50 vs 327 primary care visits per 10 persons/y. Conclusions/Implications: Because of its high discriminative power, the easy-to-use HAT index could help decision makers to plan medical and social care services.

Aim: To study the prevalence and cumulative incidence of arrhythmias in the general population of adults aged 60 and older over a 6-year period. Study Design and Setting: Data were taken from the Swedish National Study on Aging and Care (SNAC), a national, longitudinal, multidisciplinary study of the general elderly population (defined as 60 years of age or older). A 12-lead resting electrocardiography (ECG) was performed at baseline and 6-year follow-up. Results: The baseline prevalence of atrial fibrillation (AF) was 4.9% (95% confidence interval [CI] = [4.5%, 5.5%]), and other arrhythmias including ventricular premature complexes (VPCs), supraventricular tachycardia (SVT), and supraventricular extrasystole (SVES) were seen in 8.4% (7.7%, 9.0%) of the population. A first- or second-degree atrioventricular (AV) block was found in 7.1% of the population (95% CI = [6.5%, 7.7%]), and there were no significant differences between men and women in baseline arrhythmia prevalence. The 6-year cumulative incidence of AF was 4.1% (95% CI = [3.5%, 4.9%]), or 6.9/1,000 person-years (py; 95% CI = [5.7, 8.0]). The incidence of AF, other arrhythmias, AV block, and pacemaker-induced rhythm was significantly higher in men in all cohorts except for the oldest. Conclusion: Our data highlight the prevalence and incidence of arrhythmias, which rapidly increase with advancing age in the general population. open access

Objectives To examine the costs of caring for community-dwelling patients with Alzheimer’s disease (AD) dementia in relation to the time to institutionalisation. Methods GERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their caregivers in three European countries. Using identified factors associated with time to institutionalisation, models were developed to estimate the time to institutionalisation for all patients. Estimates of monthly total societal costs, patient healthcare costs and total patient costs (healthcare and social care together) prior to institutionalisation were developed as a function of the time to institutionalisation. Results Of the 1495 patients assessed at baseline, 307 (20.5%) were institutionalised over 36 months. Disease severity at baseline [based on Mini-Mental State Examination (MMSE) scores] was associated with risk of being institutionalised during follow up (p

Objectives To evaluate the trend in the use of direct care in a cohort of nursing home (NH) residents and explore its association with resident characteristics and organizational factors. Methods/design A total of 696 NH residents from 47 Norwegian NHs were included at admissions at NH. In 537 residents, the use of direct care was assessed every 6 months over a course of 3 years. A multiple model was estimated to identify demographic, clinical, and organizational characteristics associated with the use of direct care time. Results Six months after admission, on average, 76.2 hours of direct care were rendered to each resident per month, while this number was reduced to 50.3 hours per month at the end of the study period. Most residents (92%) showed a stable use of direct care time, while a small group of residents displayed a much higher and varying use of direct care time. Increasing dementia, neuropsychiatric symptoms, and decreasing function in activities of daily living were associated with higher use of direct care time. Direct care time constituted about 50% of the staff's working time. Conclusion In Norwegian NHs, high use of direct care time was associated with younger age, more severe dementia, and severe neuropsychiatric symptoms. By identifying factors that impact on direct care time, preventive measures might be put in place to the benefit of the residents and possibly to improve resource use. Further research should explore the association between direct care time, quality of care, and the residents' quality of life.

We aimed to investigate resource use and its association to cognitive impairment, activities of daily living and neuropsychiatric symptoms in residents of Swedish nursing homes. Data was collected in 2014 from a Swedish national sample of nursing home residents (n=4 831) by proxies. The sample consists of all nursing homes in 35 of 290 randomly selected Swedish municipalities. Mean age was 85 years and 67% were women. Cognitive impairment was associated with a 23 hour per week increase in total resource use versus cognitively intact persons. This was also the case for being dependent in activities of daily living. Being dependent increased the amount of resource use by twenty-five hours per week. The sex of a resident did not influence the resource use. Cognitive impairment and functional dependency increases resource use significantly in nursing homes implying possibilities for differentiation of costs in institutional settings.

The aim of this article is to describe the Umeå ageing and health research programme that explores person-centred care and health-promoting living conditions for an ageing population in Sweden, and to place this research programme in a national and international context of available research evidence and trends in aged care policy and practice. Contemporary trends in aged care policy includes facilitating ageing in place and providing person-centred care across home and aged care settings, despite limited evidence on how person-centred care can be operationalised in home care services and sheltered housing accommodation for older people. The Umeå ageing and health research programme consists of four research projects employing controlled, cross-sectional and longitudinal designs across ageing in place, sheltered housing, and nursing homes. The research programme is expected to provide translational knowledge on the structure, content and outcomes of person-centred care and health-promoting living conditions in home care, sheltered housing models, and nursing homes for older people and people with dementia.

Objectives: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). Design: Cross-sectional, population based cohort. Setting: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skane County. Participants: 3,338 persons ≥72 years. Measurements: Patterns and amounts of informal and formal care by cognition and area of residence. Results: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. Conclusions: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

Background Whether dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD) are distinct disorders or two subtypes of the same entity, is not yet fully understood. There is a dearth of knowledge on differences in longitudinal clinical outcomes between DLB and PDD. Objective We aimed to compare longitudinal trend of cognitive decline, mortality, and their determinant factors between patients with DLB and PDD. Methods At baseline, we recruited 1110 DLB, and 764 PDD patients registered in the Swedish dementia registry (SveDem) during 2007-2015. Cognitive status was assessed at baseline and each follow-up visit by mini-mental state examination (MMSE). At least one follow-up MMSE was available for 411 (37.0%) DLB and 229 (30.0%) PDD patients. Rate of cognitive decline and mortality risk were compared between the two groups. Results After an average of 2-years, the rate of cognitive decline did not differ between DLB (1.1 MMSE unit/year) and PDD (1.2 MMSE unit/year) groups (p = 0.970). There was no significant difference in the median survival time between DLB (4.0 years) and PDD (4.1 years) groups (Log rank p = 0.614). Antipsychotic drug use in DLB and larger number of medications in PDD were the most important determinants of faster annual cognitive decline. Conclusions Our findings from real-world clinical practice demonstrated that the rate of cognitive decline and mortality do not differ significantly between DLB and PDD at least over 2 years, yet, various factors might determine clinical outcome in these two groups. It seems that DLB and PDD are probably similar synucleinopathies, with phenotypical variations in the order of manifestations rather than course of progression and clinical outcome.

Poor nutrition and age per see add to the development of sarcopenia, i.e. loss of muscle mass and strength, which contributes to increased risk of impaired activities of daily living (ADL) and reduced independence. Protein deficiency plays an important role in the development of sarcopenia. In order to increase the muscle mass protein intake should be combined with physical exercise. A daily physical activity, the sit-to-stand exercise, has been proven to decrease older persons’ dependence in ADL. Our study aims to evaluate the effects of the sit-to-stand exercise in combination with a protein-rich nutritional supplement, on physical function and independence in frail nursing home residents. The resident’s perceptions and experiences of the intervention and the staff’s experiences of supporting the resident to complete the intervention will also be explored. The study is a two-arm cluster-randomized controlled trial which will be performed in nursing homes at two municipalities in Sweden. We will recruit 120 residents, age 75 or older and able to stand up from a seated position. Residents (n = 60) randomized to the intervention group will perform the sit-to-stand exercise at four occasions daily and will be offered a protein-rich oral supplement, twice a day. The intervention period will last for 12 weeks and measures of physical function, nutritional status, quality of life and health economy will be performed at baseline and at 12-weeks follow-up. The primary outcome will be the number of chair rises performed in 30 s. The control group will receive standard care. Data will be analysed by intention-to-treat analysis and with mixed effect models. During the last part of the intervention period individual interviews with the residents, on the topic of feasibility with the OPEN concept will be held. Likewise, focus-group-interviews with staff will be performed. The residents’ physical and mental health could be expected to improve. Even the work situation for staff could be positively affected. One innovative feature of the OPEN study is the simple intervention consisting of a basic daily activity that can be performed by several nursing home residents with the support of existing staff and available resources. ClinicalTrials.gov Identifier: NCT02702037.

We aimed to investigate resource use and its association to cognitive impairment, activities of daily living, and neuropsychiatric symptoms in residents of Swedish nursing homes.Data were collected in 2014 from a Swedish national sample of nursing home residents (n = 4831) and were collected by staff in the facility. The sample consists of all nursing homes in 35 of 60 randomly selected Swedish municipalities. Demographic data and data on resource use, cognitive and physical function as well as neuropsychiatric symptoms were collected through proxies. Descriptive statistics and regression modeling were used to investigate this association.We found that cognitive impairment, activities of daily living, and neuropsychiatric symptoms were associated with 23 hours per week increase in total resource use versus cognitively intact persons. This was also the case for being dependent in activities of daily living. Being totally dependent increased the amount of resource use by 25 hours per week. The sex of a resident did not influence the resource use. Annual costs of resource use with no functional dependency were 359 685 SEK, and in severely cognitive impaired resident, the cost was 825 081 SEK.Being cognitively impaired as well as functionally dependent increases the resource use significantly in nursing homes. This has implications for differentiation of costs in institutional settings in health economic evaluations.

Background With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

Most old adults receive their health care from their primary care practitioner; as a consequence, as the population ages, the manifestations and complications of cognitive impairment and dementia impose a growing burden on providers of primary care. Current guidelines do not recommend routine cognitive screening for older persons by primary care physicians, although the vast majority recommend a cognitive status assessment and neurological examination for subjects with a cognitive complaint. Also, no clinical practice guidelines recommend interventions in older adults with cognitive impairment in primary care settings. However, primary care physicians need to conduct a review of risks and protective factors associated with cognitive decline and organize interventions to improve or maintain cognitive function. Recent epidemiological studies have indicated numerous associations between lifestyle-related risk factors and incidental cognitive impairment. The development of biomarkers could also help in diagnosis, prognosis, selection for clinical trials, and objective assessment of therapeutic responses. Interventions aimed at cognitive impairment prevention should be pragmatic and easy to implement on a large scale in different health care systems, without generating high additional costs or burden on participants, medical and social care teams.

Current drugs for treatment of mild to severe dementia of the Alzheimer’s type include cholinesterase inhibitors and the NMDA non-competitive receptor antagonist memantine. There is controversy as to the additive benefit of these symptomatic drugs, and their effects are clinically modest. Patients with Alzheimer’s disease (AD) are known to have characteristic pathology, including senile plaques with amyloid beta-protein aggregates and neurofibrillary tangles with assembled tau proteins, which start in the hippocampus and spread to neighboring areas. Amyloid and tau modifying drugs are under clinical testing. Based on this pathophysiology, it is crucial to investigate whether anti-amyloid and anti-tau combined therapy would show efficacy in early stage of AD, beyond what could be achieved with anti-amyloid or anti-tau monotherapy. It is equally important to consider the socio-economic implications of such a combination therapy, if effective. We hypothesize that the high costs of combination therapy for early-stage AD patients will require societal and public health initiatives to ensure universal access to AD treatment. In order to better predict these socio-economic implications, we summarize the management of other combination therapies used for tuberculosis, HIV/AIDS, and breast cancer, based on a database search of PubMed and other relevant sources. We put forward a framework for testing a potential anti-amyloid and anti-tau disease modifying combination therapy for early-stage AD patients and present an analysis of the socio-economic implications of such a combination therapy.

Introduction New research guidelines for the diagnosis of Alzheimer's disease (AD) include biomarker evidence of amyloid-β (Aβ) and tau pathology. The aim of this study was to investigate what proportion of AD patients diagnosed in clinical routine in Sweden that had an AD-indicative cerebrospinal fluid (CSF) biomarker profile. Methods By cross-referencing a laboratory database with the Swedish Dementia Registry (SveDem), 2357 patients with data on CSF Aβ and tau biomarkers and a clinical diagnosis of AD with dementia were acquired. Results Altogether, 77.2% had pathologic Aβ 42 and total tau or phosphorylated tau in CSF. These results were stable across age groups. Female sex and low mini-mental state examination score increased the likelihood of pathologic biomarkers. Discussion About a quarter of clinically diagnosed AD patients did not have an AD-indicative CSF biomarker profile. This discrepancy may partly reflect incorrect (false positive) clinical diagnosis or a lack in sensitivity of the biomarker assays.

The concepts of target efficiency can be used to assess the extent to which service provision is in line with the needs of the population. Horizontal target efficiency denotes the extent to which those deemed to need a service receive it and vertical target efficiency is the corresponding extent to which those who receive services actually need them. The aim of this study was to assess the target efficiency of the Swedish eldercare system and to establish whether target efficiencies differ in different geographical areas such as large urban, midsize urban and rural areas. Vertical efficiency was measured by studying those people who received eldercare services and was expressed as a percentage of those who received services who were functionally dependent. To measure horizontal target efficiency, data collected at baseline in the longitudinal population study SNAC (Swedish National study on Aging and Care) during the years 2001-2004 were used. The horizontal efficiency was calculated as the percentage of functionally dependent persons who received services. Functional dependency was measured as having difficulty with instrumental activities of daily living (IADL) and/or personal activities of daily living (PADL). Services included long-term municipal eldercare services (LTC). Horizontal target efficiency for the public LTC system was reasonably high in all three geographical areas, when using dependency in PADL as the measure of need (70-90 %), but efficiency was lower when the less restrictive measure of IADL dependency was used (40-50 %). In both cases, the target efficiency was markedly higher in the large urban and the rural areas than in the midsize urban areas. Vertical target efficiency showed the same pattern-it was almost 100 % in all areas for IADL dependency, but only 50-60 % for PADL dependency. Household composition differed in the areas studied as did the way public long-term care was provided to people living alone as compared to those co-habiting.