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2.
Alzheimers Dement ; 19(5): 1800-1820, 2023 05.
Article in English | MEDLINE | ID: mdl-36284403

ABSTRACT

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.


Subject(s)
Alzheimer Disease , Cognitive Dysfunction , Dementia , Humans , Alzheimer Disease/therapy , Cost-Benefit Analysis , Economics, Pharmaceutical , Disease Progression
3.
Alzheimers Dement ; 2022 Jul 16.
Article in English | MEDLINE | ID: mdl-35841619

ABSTRACT

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.

4.
Article in English | MEDLINE | ID: mdl-35584280

ABSTRACT

OBJECTIVE: This study aimed to explore changes to resident thriving in Swedish nursing homes over a 5-year period and describe changes in associated factors. METHODS: Cross-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. RESULTS: Resident 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. CONCLUSIONS: The 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.


Subject(s)
Cognitive Dysfunction , Nursing Homes , Aggression , Cross-Sectional Studies , Humans , Sweden/epidemiology
5.
Aging Ment Health ; 26(11): 2307-2315, 2022 11.
Article in English | MEDLINE | ID: mdl-34486887

ABSTRACT

OBJECTIVES: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. METHODS: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). RESULTS: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories. CONCLUSION: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.


Subject(s)
Dementia , Quality of Life , Humans , Quality of Life/psychology , Dementia/epidemiology , Dementia/psychology , Longitudinal Studies , Caregivers/psychology , Spouses/psychology
6.
Aging Ment Health ; 26(4): 725-734, 2022 Apr.
Article in English | MEDLINE | ID: mdl-33860718

ABSTRACT

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.


Subject(s)
Dementia , Psychotic Disorders , Aged , Dementia/psychology , Health Services Needs and Demand , Humans , Longitudinal Studies , Surveys and Questionnaires
7.
BMC Geriatr ; 21(1): 498, 2021 09 16.
Article in English | MEDLINE | ID: mdl-34530734

ABSTRACT

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.


Subject(s)
Activities of Daily Living , Leadership , Aged , Cross-Sectional Studies , Humans , Nursing Homes , Patient-Centered Care , Sweden
8.
BMC Nurs ; 20(1): 8, 2021 Jan 05.
Article in English | MEDLINE | ID: mdl-33402189

ABSTRACT

BACKGROUND: Thriving has emerged as a contemporary and health-promoting concept for older people living in nursing homes; however, there has been limited research to explore how nursing home staff identify thriving in their everyday practice. The aim of this study was to explore how staff recognize expressions of thriving among persons living in nursing homes. METHODS: Semi-structured interviews were conducted with 14 nurses working at a nursing home in Victoria, Australia. The interviews were audio-recorded, transcribed and analyzed using qualitative content analysis. RESULTS: The analysis resulted in six sub-categories and three main categories. Expressions of thriving were recognized in relation to how staff understood thriving, observed thriving and sensed thriving. Staff described comparing and contrasting clinical assessment indicators with their own personal and professional understandings of thriving, as well as their overall sense of the individual person within the wider situational and environmental context. CONCLUSIONS: Our results illuminate how staff recognize everyday expressions of thriving for people living in nursing homes and emphasizes the importance of utilizing person-centred care principles in clinical assessments. These findings have practical implications with regards to how thriving is identified and assessed in long-term care, and could be used to inform and guide staff education, person-centred care strategies, and organizational policies to better support and promote thriving in nursing homes.

9.
Qual Life Res ; 30(2): 577-588, 2021 Feb.
Article in English | MEDLINE | ID: mdl-33113082

ABSTRACT

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.


Subject(s)
Caregivers/standards , Dementia/epidemiology , Dementia/therapy , Quality of Life/psychology , Aged , Cross-Sectional Studies , Europe , Female , Humans , Male , Surveys and Questionnaires
10.
Aging Ment Health ; 25(12): 2298-2309, 2021 12.
Article in English | MEDLINE | ID: mdl-33030026

ABSTRACT

OBJECTIVES: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. METHOD: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. RESULTS: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. CONCLUSION: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.


Subject(s)
Dementia , Quality of Life , Caregivers , Dementia/therapy , Europe , Health Services Accessibility , Humans
11.
BMC Geriatr ; 20(1): 465, 2020 11 11.
Article in English | MEDLINE | ID: mdl-33176712

ABSTRACT

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.


Subject(s)
Patient-Centered Care , Quality of Life , Aged , Aged, 80 and over , Cross-Sectional Studies , Humans , Nursing Homes , Sweden
12.
Aging Ment Health ; 24(2): 200-211, 2020 02.
Article in English | MEDLINE | ID: mdl-30663890

ABSTRACT

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.


Subject(s)
Caregivers/psychology , Community Health Services/statistics & numerical data , Dementia/therapy , Health Services Accessibility/statistics & numerical data , Home Care Services/organization & administration , Dementia/diagnosis , Dementia/psychology , Female , Humans , Independent Living , Male , Outcome Assessment, Health Care
13.
Qual Life Res ; 29(1): 237-251, 2020 Jan.
Article in English | MEDLINE | ID: mdl-31595452

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Dementia/epidemiology , Patient Care/methods , Quality of Life/psychology , Aged , Aged, 80 and over , Europe , Female , Humans , Male , Surveys and Questionnaires
14.
J Adv Nurs ; 76(3): 856-866, 2020 Mar.
Article in English | MEDLINE | ID: mdl-31814145

ABSTRACT

AIMS: To explore to what extent type of residence (sheltered housing or ageing in place) contributes to thriving and well-being in older adults, when controlling for age, sex, living alone, being a widow and adjusting for functional status, self-rated health, and depressive mood. DESIGN: A matched cohort study. METHODS: A self-report survey was sent out to a total population of residents in all sheltered housings in Sweden and a matched control group ageing in place (N = 3,805). The data collection took place between October 2016-January 2017. RESULTS: The interaction analyses related to thriving showed that with increasing level of depressive mood and decreasing levels of self-rated health and functional status, those residing in sheltered housing generally reported higher levels of thriving, as compared with those ageing in place. Well-being was not found to be significantly associated with type of accommodation. CONCLUSION: There may be features in sheltered housing that are associated with resident thriving especially among individuals with impairments of function, health or mood, although further studies are required to identify these specific features. IMPACT: This study informs staff and policymakers about thriving and well-being in sheltered housing accommodations. These findings may be used to further the development of sheltered housing accommodations.


Subject(s)
Aging , Housing for the Elderly , Housing , Aged , Female , Humans , Male , Sweden
15.
BMC Health Serv Res ; 19(1): 996, 2019 Dec 26.
Article in English | MEDLINE | ID: mdl-31878914

ABSTRACT

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.


Subject(s)
Nursing Homes/organization & administration , Patient-Centered Care , Surveys and Questionnaires , Adult , Dementia/nursing , Female , Humans , Male , Middle Aged , Nursing Assistants/psychology , Nursing Assistants/statistics & numerical data , Nursing Staff/psychology , Nursing Staff/statistics & numerical data , Psychometrics , Reproducibility of Results , Sweden
16.
J Adv Nurs ; 75(12): 3831-3843, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31441533

ABSTRACT

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.


Subject(s)
Geriatric Assessment/methods , Homes for the Aged , Nursing Homes , Psychometrics/standards , Surveys and Questionnaires/standards , Aged , Aged, 80 and over , Cross-Sectional Studies , Factor Analysis, Statistical , Female , Humans , Long-Term Care , Male , Quality of Life , Reproducibility of Results , Sweden
17.
Alzheimers Dement ; 15(10): 1309-1321, 2019 10.
Article in English | MEDLINE | ID: mdl-31402324

ABSTRACT

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.


Subject(s)
Alzheimer Disease/therapy , Cognitive Dysfunction/therapy , Cost-Benefit Analysis , Disease Progression , Early Diagnosis , Aged , Alzheimer Disease/economics , Cognitive Dysfunction/economics , Female , Humans , Male , Models, Statistical
18.
Gerontol Geriatr Med ; 5: 2333721419842672, 2019.
Article in English | MEDLINE | ID: mdl-31106240

ABSTRACT

To support the development of internationally comparable common data elements (CDEs) that can be used to measure essential aspects of long-term care (LTC) across low-, middle-, and high-income countries, a group of researchers in medicine, nursing, behavioral, and social sciences from 21 different countries have joined forces and launched the Worldwide Elements to Harmonize Research in LTC Living Environments (WE-THRIVE) initiative. This initiative aims to develop a common data infrastructure for international use across the domains of organizational context, workforce and staffing, person-centered care, and care outcomes, as these are critical to LTC quality, experiences, and outcomes. This article reports measurement recommendations for the care outcomes domain, focusing on previously prioritized care outcomes concepts of well-being, quality of life (QoL), and personhood for residents in LTC. Through literature review and expert ranking, we recommend nine measures of well-being, QoL, and personhood, as a basis for developing CDEs for long-term care outcomes across countries. Data in LTC have often included deficit-oriented measures; while important, reductions do not necessarily mean that residents are concurrently experiencing well-being. Enhancing measurement efforts with the inclusion of these positive LTC outcomes across countries would facilitate international LTC research and align with global shifts toward healthy aging and person-centered LTC models.

19.
Health Soc Care Community ; 27(4): e313-e322, 2019 07.
Article in English | MEDLINE | ID: mdl-30821865

ABSTRACT

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.


Subject(s)
Activities of Daily Living/psychology , Health Status , Housing for the Elderly , Quality of Life/psychology , Self Efficacy , Aged , Aged, 80 and over , Attitude to Health , Cohort Studies , Female , Humans , Male , Personal Autonomy , Self Report , Social Participation , Surveys and Questionnaires , Sweden
20.
Int J Geriatr Psychiatry ; 34(5): 745-755, 2019 05.
Article in English | MEDLINE | ID: mdl-30729572

ABSTRACT

OBJECTIVE: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. METHODS: Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). RESULTS: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. CONCLUSIONS: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.


Subject(s)
Caregivers/psychology , Dementia/psychology , Interpersonal Relations , Sense of Coherence , Adult , Aged , Aged, 80 and over , Cohort Studies , Cross-Sectional Studies , Depression/psychology , Europe , Female , Humans , Male , Middle Aged , Quality of Life/psychology , Regression Analysis , Social Support , Spouses/psychology
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