Validation of the Health Assessment Tool (HAT) based on four aging cohorts from the Swedish National study on Aging and Care.

BACKGROUND: As global aging accelerates, routinely assessing the functional status and morbidity burden of older patients becomes paramount. The aim of this study is to assess the validity of the comprehensive clinical and functional Health Assessment Tool (HAT) based on four cohorts of older adults (60 + years) from the Swedish National study on Aging and Care (SNAC) spanning urban, suburban, and rural areas. METHODS: The HAT integrates five health indicators (gait speed, global cognition, number of chronic diseases, and basic and instrumental activities of daily living), providing an individual-level score between 0 and 10. The tool was constructed using nominal response models, first separately for each cohort and then in a harmonized dataset. Outcomes included all-cause mortality over a maximum follow-up of 16 years and unplanned hospital admissions over a maximum of 3 years of follow-up. The predictive capacity was assessed through the area under the curve (AUC) using logistic regressions. For time to death, Cox regressions were performed, and Harrell's C-indices were reported. Results from the four cohorts were pooled using individual participant data meta-analysis and compared with those from the harmonized dataset. RESULTS: The HAT demonstrated high predictive capacity across all cohorts as well as in the harmonized dataset. In the harmonized dataset, the AUC was 0.84 (95% CI 0.81-0.87) for 1-year mortality, 0.81 (95% CI 0.80-0.83) for 3-year mortality, 0.80 (95% CI 0.79-0.82) for 5-year mortality, 0.69 (95% CI 0.67-0.70) for 1-year unplanned admissions, and 0.69 (95% CI 0.68-0.70) for 3-year unplanned admissions. The Harrell's C for time-to-death throughout 16 years of follow-up was 0.75 (95% CI 0.74-0.75). CONCLUSIONS: The HAT is a highly predictive, clinically intuitive, and externally valid instrument with potential for better addressing older adults' health needs and optimizing risk stratification at the population level.

Cost-effectiveness models for Alzheimer's disease and related dementias: IPECAD modeling workshop cross-comparison challenge.

INTRODUCTION: The credibility of model-based economic evaluations of Alzheimer's disease (AD) interventions is central to appropriate decision-making in a policy context. We report on the International PharmacoEconomic Collaboration on Alzheimer's Disease (IPECAD) Modeling Workshop Challenge. METHODS: Two common benchmark scenarios, for the hypothetical treatment of AD mild cognitive impairment (MCI) and mild dementia, were developed jointly by 29 participants. Model outcomes were summarized, and cross-comparisons were discussed during a structured workshop. RESULTS: A broad concordance was established among participants. Mean 10-year restricted survival and time in MCI in the control group ranged across 10 MCI models from 6.7 to 9.5 years and 3.4 to 5.6 years, respectively; and across 4 mild dementia models from 5.4 to 7.9 years (survival) and 1.5 to 4.2 years (mild dementia). DISCUSSION: The model comparison increased our understanding of methods, data used, and disease progression. We established a collaboration framework to assess cost-effectiveness outcomes, an important step toward transparent and credible AD models.

Dementia prevention: The potential long-term cost-effectiveness of the FINGER prevention program.

INTRODUCTION: The aim of this study was to estimate the potential cost-effectiveness of the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) program. METHODS: A life-time Markov model with societal perspective, simulating a cohort of people at risk of dementia reflecting usual care and the FINGER program. RESULTS: Costs were 1,653,275 and 1,635,346 SEK and quality-adjusted life years (QALYs) were 8.636 and 8.679 for usual care and the FINGER program, respectively, resulting in savings of 16,928 SEK (2023 US$) and 0.043 QALY gains per person, supporting extended dominance for the FINGER program. A total of 1623 dementia cases were avoided with 0.17 fewer person-years living with dementia. The sensitivity analysis confirmed the conclusions in most scenarios. DISCUSSION: The model provides support that programs like FINGER have the potential to be cost-effective in preventing dementia. Results at the individual level are rather modest, but the societal benefits can be substantial because of the large potential target population.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries.

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.

The thriving of older people assessment scale: Psychometric evaluation and short-form development.

AIM: To evaluate the psychometric properties and performance of the 32-item Thriving of Older People Assessment Scale (TOPAS) and to explore reduction into a short-form. BACKGROUND: The 32-item TOPAS has been used in studies of place-related well-being as a positive measure in long-term care to assess nursing home resident thriving; however, item redundancy has not previously been explored. DESIGN: Cross-sectional study. METHOD: Staff members completed the 32-item TOPAS as proxy raters for a random sample of Swedish nursing home residents (N = 4,831) between November 2013 - September 2014. Reliability analysis, exploratory factor analysis and item response theory-based analysis were undertaken. Items were systematically identified for reduction using statistical and theoretical analysis. Correlation testing, means comparison and model fit evaluation confirmed scale equivalence. RESULTS: Psychometric properties of the 32-item TOPAS were satisfactory and several items were identified for scale reduction. The proposed short-form TOPAS exhibited a high level of internal consistency (α = 0.90) and strong correlation (r = 0.98) to the original scale, while also retaining diversity among items in terms of factor structure and item difficulties. CONCLUSION: The 32-item and short-form TOPAS' indicated sound validity and reliability to measure resident thriving in the nursing home context. IMPACT: There is a lack of positive life-world measures for use in nursing homes. The short-form TOPAS indicated sound validity and reliability to measure resident thriving, providing a feasible measure with enhanced functionality for use in aged care research, assessments and care planning for health-promoting purposes in nursing homes.

Assessing cost-effectiveness of early intervention in Alzheimer's disease: An open-source modeling framework.

INTRODUCTION: We develop a framework to model disease progression across Alzheimer's disease (AD) and to assess the cost-effectiveness of future disease-modifying therapies (DMTs) for people with mild cognitive impairment (MCI) due to AD. METHODS: Using data from the US National Alzheimer's Coordinating Center, we apply survival analysis to estimate transition from predementia to AD dementia and ordered probit regression to estimate transitions across AD dementia stages. We investigate the cost-effectiveness of a hypothetical treatment scenario for people in MCI due to AD. RESULTS: We present an open-access model-based decision-analytic framework. Assuming a modest DMT treatment effect in MCI, we predict extended life expectancy and a reduction in time with AD dementia. DISCUSSION: Any future DMT for AD is expected to pose significant economic challenges across all health-care systems, and decision-analytic modeling will be required to assess costs and outcomes. Further developments are needed to inform these health policy considerations.

Residing in sheltered housing versus ageing in place - Population characteristics, health status and social participation.

Sheltered housing is a housing model that provides accessible apartments with elevated social possibilities for older people, which is expected to increase resident health and independence, reducing the need for care. As previous research on sheltered housing is scarce, the aim of this study was to explore the characteristics, health status and social participation of older people living in sheltered housing, compared to ageing in place. The study utilised baseline data from a matched cohort study survey on a nationally representative total population of residents in all sheltered housings in Sweden, and a matched control group (n = 3,805). The data collection took place between October 2016 and January 2017. The survey assessed functional capability using the Katz ADL and Lawton IADL scale, self-rated health using the EQ5D scale, and depressive mood using the GDS-4 scale. Descriptive statistics, frequencies, mean scores, independent t tests, p-values and effect sizes were utilised to compare the two groups. The results of the study show that older people living in sheltered housing, compared to ageing in place, had lower self-reported health (M = 64.68/70.08, p = <0.001), lower self-reported quality of life (M = 0.73/0.81, p = <0.001), lower functional status concerning activities of daily living (M = 5.19/5.40, p = <0.001), lower functional status concerning instrumental activities of daily living (M = 4.98/5.42 p = <0.001,), and higher probability of depressive mood (M = 0.80/0.58, p = <0.001). The results imply that residents in sheltered housing may have more care needs than those ageing in place. Further longitudinal comparative studies are needed to explore the impact residence in sheltered housing has on resident health and well-being.

Resource use and its association to cognitive impairment, ADL functions, and behavior in residents of Swedish nursing homes: Results from the U-Age program (SWENIS study).

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia.

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.

Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study.

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.

Systematic pain assessment in nursing homes: a cluster-randomized trial using mixed-methods approach.

BACKGROUND: Chronic pain affects nursing home residents' daily life. Pain assessment is central to adequate pain management. The overall aim was to investigate effects of a pain management intervention on nursing homes residents and to describe staffs' experiences of the intervention. METHODS: A cluster-randomized trial and a mixed-methods approach. Randomized nursing home assignment to intervention or comparison group. The intervention group after theoretical and practical training sessions, performed systematic pain assessments using predominately observational scales with external and internal facilitators supporting the implementation. No measures were taken in the comparison group; pain management continued as before, but after the study corresponding training was provided. Resident data were collected baseline and at two follow-ups using validated scales and record reviews. Nurse group interviews were carried out twice. Primary outcome measures were wellbeing and proxy-measured pain. Secondary outcome measures were ADL-dependency and pain documentation. RESULTS: Using both non-parametric statistics on residential level and generalized estimating equation (GEE) models to take clustering effects into account, the results revealed non-significant interaction effects for the primary outcome measures, while for ADL-dependency using Katz-ADL there was a significant interaction effect. Comparison group (n = 66 residents) Katz-ADL values showed increased dependency over time, while the intervention group demonstrated no significant change over time (n = 98). In the intervention group, 13/44 residents showed decreased pain scores over the period, 14/44 had no pain score changes ≥ 30% in either direction measured with Doloplus-2. Furthermore, 17/44 residents showed increased pain scores ≥ 30% over time, indicating pain/risk for pain; 8 identified at the first assessment and 9 were new, i.e. developed pain over time. No significant changes in the use of drugs was found in any of the groups. Nursing pain related documentation was sparse. In general, nurses from the outset were positive regarding pain assessments. Persisting positive attitudes seemed strengthened by continued assessment experiences and perceptions of improved pain management. CONCLUSION: The implementation of a systematic work approach to pain issues in nursing homes indicates that an increased awareness, collaboration across and shared understanding among the team members of the pain assessment results can improve pain management and lead to decreased physical deterioration or the maintenance of physical and functional abilities among NH residents. However, pain (proxy-measured) and wellbeing level did not reveal any interaction effects between the groups over time. TRIAL REGISTRATION: The study was registered in ISRCTN71142240 in September 2012, retrospectively registered.

The societal costs of dementia in Sweden 2012 - relevance and methodological challenges in valuing informal care.

BACKGROUND: In this study, we sought to estimate the societal cost of illness in dementia in Sweden in 2012 using different costing approaches to highlight methodological issues. METHODS: We conducted a prevalence-based cost-of-illness study with a societal perspective. RESULTS: The societal costs of dementia in Sweden in 2012 were SEK 62.9 billion (approximately €7.2 billion, approximately US$9.0 billion) or SEK 398,000 per person with dementia (approximately €45,000, approximately US$57,000). By far the most important cost item is the cost of institutional care: about 60% of the costs. In the sensitivity analysis, different quantification and costing approaches for informal care resulted in a great variation in the total societal cost, ranging from SEK 60 billion (€6.8 billion, US$8.6 billion) to SEK 124 billion (€14.1 billion, US$17.8 billion). CONCLUSIONS: The societal costs of dementia are very high. The cost per person with dementia has decreased somewhat, mainly because of de-institutionalisation. The majority of the costs occur in the social care sector, but the costing of informal care is crucial for the cost estimates.

The impact of dementia on drug costs in older people: results from the SNAC study.

BACKGROUND: We aimed to investigate the impact of dementia on drug costs in older people, after adjustment for socio-demographic factors, residential setting and co-morbidities. METHODS: We included 4,129 individuals aged ≥ 60 years from The Swedish National Study on Aging and Care (SNAC) in Kungsholmen and Nordanstig 2001-2004. A generalized linear model (GLM) was used to investigate how much dementia was associated with drug costs. RESULTS: Overall drug costs for persons with and without dementia were 6147 SEK (816 USD) and 3810 SEK (506 USD), respectively. The highest drug cost was observed for nervous system drugs among persons with dementia. The adjusted GLM showed that dementia was not associated with higher overall drug costs (ß = 1.119; ns). Comorbidities and residential setting were the most important factors for overall drug costs. CONCLUSION: We found that the observed higher overall drug costs for persons with dementia were due to comorbidities and residential setting.

Cost of Dementia and Its Correlation With Dependence.

OBJECTIVE: To estimate the cost of dementia care and its relation to dependence. METHOD: Disease severity and health care resource utilization was retrieved from the Swedish National Study on Aging and Care. Informal care was assessed with the Resource Utilization in Dementia instrument. A path model investigates the relationship between annual cost of care and dependence, cognitive ability, functioning, neuropsychiatric symptoms, and comorbidities. RESULTS: Average annual cost among patients diagnosed with dementia was €43,259, primarily incurred by accommodation. Resource use, that is, institutional care, community care, and accommodation, and corresponding costs increased significantly by increasing dependency. Path analysis showed that cognitive ability, functioning, and neuropsychiatric symptoms were significantly correlated with dependence, which in turn had a strong impact on annual cost. DISCUSSION: This study confirms that cost of dementia care increases with dependence and that the impact of other disease indicators is mainly mediated by dependence.

Impact of Inappropriate Drug Use on Hospitalizations, Mortality, and Costs in Older Persons and Persons with Dementia: Findings from the SNAC Study.

BACKGROUND: Inappropriate drug use (IDU) is an important risk factor for adverse outcomes in older persons. We aimed to investigate IDU and the risk of hospitalizations and mortality in older persons and in persons with dementia and to estimate the costs of IDU-related hospitalizations. METHODS: We analyzed 4108 individuals aged ≥60 years from the Swedish National Study on Aging and Care (SNAC) data from Kungsholmen and Nordanstig (2001-2004). IDU was assessed by indicators developed by the Swedish National Board of Health and Welfare. Hospitalizations and mortality data were collected from Swedish registers. Regression models were used to investigate associations between IDU, hospitalizations, and mortality in the whole population and in the subpopulation of persons with dementia (n = 319), after adjustment for sociodemographics, physical functioning, and co-morbidity. Costs for hospitalizations were derived from the Nord-Diagnose Related Group cost database. RESULTS: IDU was associated with a higher risk of hospitalization [adjusted odds ratio (OR) = 1.46; 95% confidence interval (CI) 1.18-1.81] and mortality [adjusted hazard ratio (HR) = 1.15; 95% CI 1.01-1.31] within 1 year in the whole study population and with hospitalization (adjusted OR = 1.88; 95% CI 1.03-3.43) in the subpopulation of persons with dementia, after adjustment for confounding factors. There was also a tendency for higher costs for hospitalizations with IDU than without IDU, although this was not statistically significant. CONCLUSIONS: Our findings suggest that IDU is associated with an increased risk of hospitalization in older persons and in persons with dementia. IDU is also associated with mortality among older persons. These findings highlight the need for cautious prescribing of long-acting benzodiazepines, anticholinergic drugs, concurrent use of three or more psychotropic drugs and drug combinations that may lead to serious drug-drug interactions to older patients. Further studies are needed to investigate the association between IDU and costs for hospitalizations.

Mortality and treatment costs have a great impact on the cost-effectiveness of disease modifying treatment in Alzheimer's disease--a simulation study.

BACKGROUND: The societal costs of Alzheimer's Disease (AD) are enormous and pose a great challenge for the health and social care in any society. It is of vital importance to develop and identify cost effective treatment. The aim of the study was to present a hypothetical economic model of Disease Modifying Treatment (DMT) in AD. METHODS: A 20 year Markov cohort model of DMT was constructed, based on Swedish care conditions. States and progression were defined according to the Mini Mental State Examination (MMSE). Epidemiological studies of incidence of dementia, prevalence and costs of Mild Cognitive Impairment (MCI) and AD as well as conversion studies of MCI and demographic statistics were used as inputs in the model. RESULTS: Total costs were 113,797 million SEK for patients treated with DMT vs 88,562 million SEK for untreated patients. The corresponding gained QALYs were 529,945 and 450,307 respectively, giving an incremental cost effectiveness ratio of 293,002 SEK/QALY in the base option. Survival in the model was 8.72 years with DMT and 7.77 years for untreated. With an assumed Willingness to pay (WTP) of 600,000 SEK (about 86,200 US$ and 62,000 ) per gained QALY, the model indicated cost effectiveness with DMT. The sensitivity analysis implied no cost savings with DMT, but most options indicated cost effectiveness vs. the chosen WTP. CONCLUSION: The main reasons for the higher costs with DMT were the costs of DMT itself and the prolonged survival with DMT. Even if costs increase with DMT, the model indicates cost effectiveness.

Net costs of dementia in Sweden - an incidence based 10 year simulation study.

BACKGROUND: Aging of the population results in increasing number people suffering from dementia, and this will have a great impact on costs for the society. Because of the long duration of dementia disorders, it is difficult to collect empirical data for the whole survival period of incident cases. Therefore, modeling approaches are frequently used. The purpose of this study was to describe the costs of an incident dementia cohort with progression modeling. METHODS: Epidemiological data indicated that the incidence of dementia in Sweden was 24,000 people in 2005. Thus, incident cases were run in a Markov model for 10 cycles of 1 year each. Severity state specific costs were used and defined by Clinical Dementia Rating scale. RESULTS: Total cost for the cohort was 27.24 billion Swedish Krona (SEK). The mean cost per person and year was 269,558 SEK. Total cost for long-term institutional care was 21 billion SEK during the modeled period. CONCLUSION: Cost of long-term institutional care is the major cost driver, even in mild dementia.