Dementia and use of drugs : economic modelling and population-based studies

The overall aim of this thesis was to investigate epidemiological and health economic aspects of dementia and drug use in older people, through economic modelling and analyses of population-based studies. The major findings from the separate studies are summarized below. Study I We aimed to investigate whether dementia was associated with higher drug costs in 4,108 participants aged ≥ 60 years from the Swedish National Study on Aging and Care in Kungsholmen and Nordanstig (SNAC-K and SNAC-N). Overall, the average crude cost of drug use was 6,147 SEK per year for people with dementia and 3,810 SEK per year for people without dementia. The cost of nervous system drugs was more than five times higher in persons with dementia than without. However, the higher crude costs for drug use in people with dementia were confounded by comorbidities and residential setting. In fact, the strongest drug cost driver was comorbidity followed by residential setting. Study II We aimed to investigate inappropriate drug use (IDU) and risk of hospitalizations and mortality in older persons and in persons with dementia and to also estimate the costs of IDU-related hospitalizations. In this study, based on data from SNAC-K and SNAC-N, the National Patient Register and the Cause of Death Register, we used logistic and Cox regression models to analyse associations between IDU, hospitalizations and mortality in the whole study population and in the subpopulation of persons with dementia. We found a higher risk of hospitalization (adjusted OR=1.46; 95% CI 1.18-1.81) and mortality (adjusted HR=1.15; 95% CI 1.01-1.31) 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 not statistically significant. Study III We aimed to describe the costs of an incident cohort of persons with dementia through simulation modelling. With input from epidemiological data, the Markov model estimated approximately 24,000 incident cases of dementia in Sweden in 2005. The incident cohort was run in the model for ten cycles of one year each. State specific costs were used and defined by the Clinical Dementia Rating scale. Results of the simulation showed that the total costs of the cohort were 27.7 billion SEK. The average annual cost of one person with dementia was 269,558 SEK. The severe state of dementia accounted for the largest proportion of costs for incident dementia cases. Costs of drugs in dementia only accounted for about 2% of the costs in the model. The main cost driver was institutional care, even for mild dementia. Study IV We aimed to introduce a hypothetical economic model of a disease modifying treatment (DMT) for Alzheimer’s disease (AD). We created a Markov model built on Swedish conditions with two arms; one representing the hypothetical treatment and the other arm representing no treatment. States and progression of the disease were defined with Mini Mental State Examination. Epidemiological data of incidence, prevalence and costs of mild cognitive impairment (MCI), studies of conversion from MCI to AD and official statistics were used as input in the model. The incremental cost effectiveness ratio was 293,002 SEK/Quality Adjusted Life Year. The treated persons showed increased survival (8.7 years) versus the non-treated persons (7.8 years). With a societal willingness to pay of 600,000 SEK, the hypothetical treatment can be considered as cost effective. The main reasons for the higher costs with DMT were the costs of DMT itself and the prolonged survival with DMT. Conclusion: The observed higher crude drug costs in dementia were confounded by comorbidities and residential setting. We also found that IDU was associated with an increased risk of hospitalization and mortality among older persons. This underlines the need for cautious prescribing to elderly patients. However, further studies are needed to investigate the association between IDU and costs for hospitalizations. The highest accumulated costs in dementia occur in severe dementia and the major cost driver is institutionalization, even in mild dementia. Drugs, on the other hand, constitute only a minor part of the total costs. Our study of a hypothetical DMT showed that DMT in AD is projected as not being cost saving if the treatment prolongs survival. Still, if a societal willingness-to pay level of 600,000 SEK is adopted, the treatment can be considered as cost effective

A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries

Purpose Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia. Methods Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman’s correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries. Results The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect. Conclusion This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia

A Rasch analysis of the Person-Centred Climate Questionnaire – staff version

Background: Person-centred care is the bedrock of modern dementia services, yet the evidence-base to support its implementation is not firmly established. Research is hindered by a need for more robust measurement instruments. The 14-item Person-Centred Climate Questionnaire - Staff version (PCQ-S) is one of the most established scales and has promising measurement properties. However, its construction under classical test theory methods leaves question marks over its rigour and the need for evaluation under more modern testing procedures. Methods: The PCQ-S was self-completed by nurses and other care staff working across nursing homes in 35 Swedish municipalities in 2013/14. A Rasch analysis was undertaken in RUMM2030 using a partial credit model suited to the Likert-type items. Three subscales of the PCQ-S were evaluated against common thresholds for overall fit to the Rasch model; ordering of category thresholds; unidimensionality; local dependency; targeting; and Differential Item Functioning. Three subscales were evaluated separately as unidimensional models and then combined as subtests into a single measure. Due to large number of respondents (n = 4381), two random sub-samples were drawn, with a satisfactory model established in the first ('evaluation') and confirmed in the second ('validation'). Final item locations and a table converting raw scores to Rasch-transformed values were created using the full sample. Results: All three subscales had disordered thresholds for some items, which were resolved by collapsing categories. The three subscales fit the assumptions of the Rasch model after the removal of two items, except for subscale 3, where there was evidence of local dependence between two items. By forming subtests, the 3 subscales were combined into a single Rasch model which had satisfactory fit statistics. The Rasch form of the instrument (PCQ-S-R) had an adequate but modest Person Separation Index (< 0.80) and some evidence of mistargeting due to a low number of `difficult-to-endorse' items. Conclusions: The PCQ-S-R has 12 items and can be used as a unidimensional scale with interval level properties, using the nomogram presented within this paper. The scale is reliable but has some inefficiencies due to too few high-end thresholds inhibiting discrimination amongst populations who already perceive that person-centred care is very good in their environment

The Swedish National study on Aging and Care in Nordanstig (SNAC-N)

The national study SNAC - The Swedish National Study on Aging and Care, includes four participating areas: SNAC-Blekinge, SNAC Kungsholmen, SNAC Nordanstig and SNAC Skåne (GÅS). In all four areas, a research centre conducts a population study and a health care system study has been conducted. (Metadata related to the main study SNAC and the other participating areas can be found under the Related studies tab). Purpose: SNAC-N has particularly focused on dementia, health economics, informal care, pharmaceuticals, functional capacity, and computing.Den nationella äldrestudien SNAC - The Swedish National Study on Aging and Care, innefattar fyra deltagande områden: SNAC-Blekinge, SNAC-Kungsholmen, SNAC-Nordanstig och SNAC-Skåne (GÅS). Vid samtliga fyra områden finns ett forskningscentrum som bedriver dels en befolkningsstudie och dels en vårdsystemstudie. Under 'Relaterade studier' finns beskrivning om huvudstudien SNAC, samt specifik studiebeskrivning för respektive delstudie inom SNAC. SNAC-N Nordanstig Förutom de breda nationella epidemiologiska frågeställningar om prevalens, incidens, mortalitet och riskfaktorpanorama för olika tillstånd så har verksamheten i Nordanstig vissa profilområden: demenssjukdomar, hälsoekonomi, informell vård, läkemedelsanvändning, funktionsförmåga, samt datoranvändning. Eftersom demens är en viktig del av Nordanstigs profil har stor vikt lagts vid sättande av demensdiagnoser och stadieindelning av kognitiv nedsättning. Befolkningsdel: Vid baslinjeundersökningen som genomfördes mellan 2001-2003 deltog totalt 766 personer av de 1016 som inbjöds (vilket motsvarar ett bortfall på 25%). Den första uppföljningen av deltagare 81 år eller äldre genomfördes mellan 2004-2006 då 216 personer deltog av totalt 266 inbjudna (vilket motsvarar ett bortfall på 19%). Den första uppföljningen av hela den ursprungliga studiepopulationen genomfördes mellan 2007-2009, då 693 personer deltog av totalt 904 inbudna (vilket motsvarar ett bortfall på 23%). Ytterligare en uppföljning av 81 åringar och äldre påbörjades 2010 och avslutades 2012. Vid undersökningen deltog 251 personer av totalt 276 inbjudna (vilket motsvarade ett bortfall på 18%). Vårdsystemdel: I Vårdsystemdelen registreras de som har någon form av insats från kommunen. Den kan vara kort- eller långvarig och syftar till att samla in uppgifter om kommunal vård och omsorg med målet att underlätta planering av densamma. Data som samlas in rör bl.a. fysisk funktionsförmåga, omvårdnads- och sjukvårdskonsumtion och hur bostaden är beskaffad.Syftet med datainsamlingen i vårdsystemdelen är att kontinuerligt följa de vård- och omsorgsinsatser, som den äldre befolkningen erhåller, såväl akuta som långvariga, samt att därvid också registrera olika faktorer, som har betydelse för tilldelningen av insatserna. Insamlade data skall kunna användas som underlag för planering, resursfördelning och utvärdering av vården och omsorgen av de äldre. Härutöver skall insamlade data också kunna användas i forsknings- och utvecklingsarbete kring frågor om vård och omsorg. Syfte: Inom ramen för SNAC har delstudien SNAC-N speciellt inriktats på demenssjukdomar, hälsoekonomi, informell vård, läkemedelsanvändning, funktionsförmåga, samt datoranvändning

Characteristics of nursing home units with high versus low levels of person-centred care in relation to leadership, staff- resident- and facility factors : findings from SWENIS, a cross-sectional study in Sweden

Background: The context of care consists of factors that determines the extent to which staff can offer person-centred care. However, few studies have investigated factors that can explain variation in levels of person-centred care among nursing home units. The aim of this study was to explore factors characterizing nursing home units with high and low degree of person-centred care, with focus on leadership, staff, resident and facility factors. Methods: Cross-sectional data from residents, staff, and managers in 172 randomly selected nursing homes in Sweden were collected in 2014. Activities of Daily Living Index, Gottfries' cognitive scale, Person-centred Care Assessment Tool together with demographic information and estimations of leadership engagement was used. Independent samples t-test and Chi2 test were conducted. Results: Highly person-centred units were characterised by leaders engaging in staff knowledge, professional development, team support and care quality. In highly person-centred units' staff also received supervision of a nurse to a larger extent. Highly person-centred units were also characterised as dementia specific units, units with fewer beds and with a larger proportion of enrolled nurses. No differences in degree of person-centred care were seen between public or private providers. Conclusions: This study provides guidance for practitioners when designing, developing and adapting person-centred units in aged care contexts. Managers and leaders have an important role to promote the movement towards a person-centred practice of care, by supporting their staff in daily care, and engaging in staff knowledge and professional development. Targeting and adjusting environmental factors, such as provide small and dementia adapted environments to match the residents' personal preferences and capacity are also important when striving towards person-centredness

‘100 metres to the liquor store and 300 meters to the cemetary’ : individual, social, environmental and organizational facilitators and barriers to thriving in Swedish sheltered housing models

In Sweden, sheltered housing is a housing model that provides accessible apartments with elevated social possibilities for older people. The environment within sheltered housing is expected to support resident health and reduce the need for care services. A previous study has shown that with increasing levels of depressive mood and decreasing levels of self-rated health and functional status, those residing in sheltered housing report higher levels of thriving compared to those ageing in place. Therefore, the aim of this study was to illuminate aspects of sheltered housing that are facilitators and/or barriers to thriving. Seven semi-structured group interviews in five different sheltered housing accommodations in Sweden were conducted between April 2019 and January 2020 (N = 38). The results, analysed using qualitative content analysis and presented in a model developed by Grol and Wensing, illuminate the four main categories of facilitators and barriers to thriving: individual factors, social context, environmental factors and organisational context. The results of this study show that the factors that influence experiences of thriving in sheltered housing are multifaceted and interconnected. Although the supportive environment provided in sheltered housing seems to contribute to thriving, the limited consideration towards the shifting health of residents is a barrier to thriving. The results of this study may assist in implementing tailored interventions to help support thriving on various levels

Exploring person-centred care in relation to resource utilization, resident quality of life and staff job strain : findings from the SWENIS study

BACKGROUND: A critical challenge facing elderly care systems throughout the world is to meet the complex care needs of a growing population of older persons. Although person-centred care has been advocated as the "gold standard" and a key component of high-quality care, the significance of care utilisation in person-centred units as well as the impact of person-centred care on resident quality of life and staff job strain in nursing home care has yet to be explored. The aim of this study was to explore person-centred care and its association to resource use, resident quality of life, and staff job strain. DESIGN: A cross-sectional national survey. METHODS: Data on 4831 residents and 3605 staff were collected by staff working in nursing homes in 35 randomly selected Swedish municipalities in 2014. Descriptive statistics and regression modelling were used to explore associations between person-centred care and resource use, resident quality of life, and staff job strain. RESULTS: No association was found between person-centred care and resource use. Person-centred care was positively associated with resident quality of life and was negatively associated with staff perception of job strain. CONCLUSION: Person-centred care does not increase resource utilisation in nursing homes, but beneficially impacts resident quality of life and alleviates the care burden in terms job strain among staff

Exploring changes to resident thriving and associated factors in Swedish nursing homes : a repeated cross-sectional study

ObjectiveThis study aimed to explore changes to resident thriving in Swedish nursing homes over a 5-year period and describe changes in associated factors. MethodsCross-sectional data were collected from a randomised sample of Swedish nursing homes in 2013/2014 (baseline) and 2018/2019 (follow-up). Descriptive statistics, independent samples t-tests, and chi squared tests were used to statistically evaluate differences between the samples. Simple and multiple linear regression analyses were used to explore associations between thriving and the study variables. ResultsResident characteristics were relatively consistent between the full baseline (N = 4831) and follow-up (N = 3894) samples. Within a sub-sample of nursing homes that participated in both data collections mean thriving scores were found to have increased from 152.9 to 155.2 (p ≤ 0.003; d =0.09) and overall neuropsychiatric index scores had decreased from 16.0 to 14.3 (p ≤ 0.004; d =0.09), as had the prevalence of several neuropsychiatric symptoms. Thriving was found to have a positive association with the neuropsychiatric symptom of elation/euphoria, and negative associations with the symptoms of aggression/agitation, depression/dysphoria, apathy, and irritability. ConclusionsThe results show an increase in overall thriving scores and a decrease in overall neuropsychiatric scores between baseline and follow-up. This study confirmed associations between thriving and certain neuropsychiatric symptoms and established comparative knowledge regarding changes in resident thriving, characteristics, and symptom prevalence. These findings could inform future care and organisational policies to support thriving in nursing homes, particularly among residents at risk of lower thriving due to cognitive impairment or neuropsychiatric symptoms.Originally included in thesis in manuscript form with title "Exploring longitudinal changes to thriving for people living in Swedish nursing homes"</p

Relocation Patterns and Predictors of Relocation and Mortality in Swedish Sheltered Housing and Aging in Place

A reported objective of Swedish sheltered housing is to postpone care needs and relocation. The aim of this study was to describe migration patterns and explore predictors of relocation to nursing homes and mortality, in a sample of residents in sheltered housing and aging in place. To explore longitudinal differences between groups, study data were combined with registry data. The results showed that a higher percentage of residents in sheltered housing had relocated to a nursing home and deceased over a three-year time period, compared to aging in place, implying further interventions may be required to promote health in sheltered housing.Originally included in thesis in manuscript form. </p