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Differences in quality of life in home-dwelling persons and nursing home residents with dementia - a cross-sectional study.

ABSTRACT: Dementia often eventually leads to dependency on others and finally to residential care. However, in Norway about half of the dementia population lives at home, due to individual and political wishes. There is scarce and inconclusive knowledge of how living in a nursing home differs from living at home for persons with dementia (PWDs) with regard to their quality of life (QoL). The first aim of the study was therefore to compare QoL, cognitive and physical functions, social contacts, sleep patterns, physical activity levels, exposure to light, and medication of PWDs in nursing homes and home-dwelling PWDs, and whether living in nursing homes was associated with a lower QoL than living at home for PWDs. A second aim was to examine if possible differences between residencies in QoL were consistent over time.The cross-sectional study was based on baseline data from two RCT studies of PWDs. A total of 15 nursing homes with adapted units for PWDs and 23 adapted day care centres for home-dwelling PWDs recruited 78 and 115 participants respectively. Trained nurses scored sociodemographic data, level of dementia (on the Clinical Dementia Rating scale), amount of medication, and QoL (QUALID). Sleep patterns, physical activity levels, and light exposure were measured by actigraphy. A multiple regression analysis was used to test the association between residency and QoL. The association between residency and change in QoL over time was investigated by linear regression analysis of a subsample with follow-up data.Home-dwelling PWDs showed significantly higher QoL than PWDs in nursing homes. This difference was maintained even after stratifying on the severity of dementia. Home-dwelling PWDs with moderate dementia showed significantly less use of walking aids, more social contact, higher levels of activity and exposure to daylight, and less use of psychotropic medications. The regression model explained 28 % of the variance in QoL in persons with moderate dementia. However, only residency contributed significantly in the model. Residency also significantly predicted negative change over time in QoL.The study indicated that living at home as long as possible is not only desirable for economic or health political reasons but also is associated with higher QoL for persons with moderate dementia. More studies are needed to investigate how QoL could be increased for PWDs in nursing homes.

SUBMITTER: Olsen C

PROVIDER: S-EPMC4939817 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Differences in quality of life in home-dwelling persons and nursing home residents with dementia - a cross-sectional study.

Olsen Christine C Pedersen Ingeborg I Bergland Astrid A Enders-Slegers Marie-José MJ Jøranson Nina N Calogiuri Giovanna G Ihlebæk Camilla C

BMC geriatrics 20160711

<h4>Background</h4>Dementia often eventually leads to dependency on others and finally to residential care. However, in Norway about half of the dementia population lives at home, due to individual and political wishes. There is scarce and inconclusive knowledge of how living in a nursing home differs from living at home for persons with dementia (PWDs) with regard to their quality of life (QoL). The first aim of the study was therefore to compare QoL, cognitive and physical functions, social co ...[more]

PMID: 27400744

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Project description:OBJECTIVES:To validate the ICECAP-O capability wellbeing measure's German translation in older people with dementia living in a nursing home, and to investigate the influence of proxy characteristics on responses. METHOD:Cross-sectional study. For 95 residents living in a German nursing home, questionnaires were completed by nursing professionals serving as proxy respondents. We investigated the convergent validity of the ICECAP-O with other Quality of Life (Qol) measures, the EQ-5D extended with a cognitive dimension (EQ-5D+C), the Alzheimer's Disease Related Quality of Life (ADRQL) measures, and the Barthel-index measure of Activities of Daily Living (ADL). Discriminant validity was investigated using bivariate and multivariate stepwise regression analysis, comparing ICECAP-O scores between subgroups varying in dementia severity, care dependency, ADL status and demographic characteristics. RESULTS:Convergent validity between the ICECAP-O, EQ-5D+C, ADRQL and Barthel-Index scores was moderate to good (with correlations of 0.72, 0.69 and 0.53 respectively), but differed considerably between dimensions of the instruments. Discriminant validity was confirmed by finding differences in ICECAP-O scores between subgroups based on ADL scores (0.58 below 65 points on the Barthel-index and 0.80 above 65 points) and other characteristics. The ICECAP-O scores based on available tariffs were related to proxy characteristics gender (0.52 males versus 0.65 females) and work experience (0.61 below 2 years of experience versus 0.68 above 2 years). DISCUSSION:The results of this study suggest that the ICECAP-O is a promising generic measure for general Qol and capability of people with dementia living in a nursing home. Validity tests generally yielded favorable results. Work experience and gender appeared to influence proxy response, which raises questions regarding appropriate proxies, especially since the ICECAP-O may be completed by proxies relatively often. Further research is necessary to validate the German version of the ICECAP-O, with specific attention to proxy completion for people with dementia.

Project description:ObjectiveExplore within and across nursing home (NH) racial disparities in end-of-life (EOL) hospitalizations for residents with Alzheimer's disease or related dementia (ADRD), and examine whether severe cognitive impairment influences these relationships.DesignObservational study merging, at the individual level, C2014-2017 national-level Minimum Data Set (MDS), Medicare Beneficiary Summary Files (MBSF), and Medicare Provider Analysis and Review (MedPAR). Nursing Home Compare (NHC) was also used.SettingLong-stay residents who died in a NH or a hospital within 8 days of discharge.ParticipantsAnalytical sample included 665,033 decedent residents with ADRD in 14,595 facilities.Main outcomes and measuresThe outcome was hospitalization within 30 days of death. Key independent variables were race, severe cognitive impairment, and NH-level proportion of black residents. Other covariates included socio-demographics, dual eligibility, hospice enrollment, and chronic conditions. Facility-level characteristics were also included (e.g. profit status, staffing hours, etc.). We fit linear probability models with robust standard errors, fixed and random effects.ResultsCompared to whites, black decedents had a significantly (p < 0.01) higher risk of EOL hospitalizations (7.88%). Among those with severe cognitive impairment, whites showed a lower risk of hospitalizations (6.04%). But EOL hospitalization risk among blacks with severe cognitive impairment was still significantly elevated (β = 0.0494; p < 0.01). A comparison of the base model with the fixed and random-effects models showed statistically significant hospitalization risk by decedent's race both within and across facilities.Conclusions and relevanceWe found disparities between black and white residents with ADRD both within and across facilities. The within-facility disparities may be due to residents' preferences and/or NH practices that contribute to differential treatment. The across facility differences point to the overall quality of care disparities in homes with a higher prevalence of black residents. Persistence of such systemic disparities among the most vulnerable individuals is extremely troubling.

Project description:ImportanceNursing home residents with advanced dementia have limited life expectancies yet are commonly subjected to burdensome interventions at the very end of life. Whether sex-specific differences in the receipt of these interventions exist and what levels of physical restraints and antibiotics are used in this terminal setting are unknown.ObjectiveTo evaluate the population-based frequency, factors, and sex differences in burdensome interventions and antibiotic therapy among nursing home residents with advanced dementia.Design, setting, and participantsThis population-based cohort study from Ontario, Canada, used linked administrative databases held at ICES, including the Continuing Care Resident Reporting System Long-Term Care database, which contains data from the Resident Assessment Instrument Minimum Data Set, version 2.0. Nursing home residents (n?=?27?243) with advanced dementia who died between June 1, 2010, and March 31, 2015, at 66 years or older were included in the analysis. Initial statistical analysis was completed in May 2017, and analytical revisions were conducted from November 2018 to January 2019.ExposureSex of the nursing home resident.Main outcomes and measuresBurdensome interventions (transitions of care, invasive procedures, and physical restraints) and antibiotic therapy in the last 30 days of life.ResultsThe final cohort included 27?243 nursing home residents with advanced dementia (19?363 [71.1%] women) who died between June 1, 2010, and March 31, 2015, at the median (interquartile range) age of 88 (83-92) years. In the last 30 days of life, burdensome interventions were common, especially among men: 5940 (21.8%) residents were hospitalized (3661 women [18.9%] vs 2279 men [28.9%]; P?<?.001), 2433 (8.9%) had an emergency department visit (1579 women [8.2%] vs 854 men [10.8%]; P?<?.001), and 3701 (13.6%) died in an acute care facility (2276 women [11.8%] vs 1425 men [18.1%]; P?<?.001). Invasive procedures were also common; 2673 residents (9.8%) were attended for life-threatening critical care (1672 women [8.6%] vs 1001 men [12.7%]; P?<?.001), and 210 (0.8%) received mechanical ventilation (113 women [0.6%] vs 97 men [1.2%]; P?<?.001). Among the 9844 residents (36.1%) who had a Resident Assessment Instrument Minimum Data Set, version 2.0, completed in the last 30 days of life, 2842 (28.9%) were physically restrained (2002 women [28.3%] vs 840 men [30.4%]; P?=?.005). More than one-third (9873 [36.2%]) of all residents received an antibiotic (6599 women [34.1%] vs 3264 men [41.4%]; P?<?.001). In multivariable models, men were more likely to have a transition of care (adjusted odds ratio, 1.41; 95% CI, 1.33-1.49; P?<?.001) and receive antibiotics (adjusted odds ratio, 1.33; 95% CI, 1.26-1.41; P?<?.001). Only 3309 residents (12.1%; 2382 women [12.3%] vs 927 men [11.8%]) saw a palliative care physician in the year before death, but those who did experienced greater than 50% lower odds of an end-of-life transition of care (adjusted odds ratio, 0.48; 95% CI, 0.43-0.54); P?<?.001) and greater than 25% lower odds of receiving antibiotics (adjusted odds ratio, 0.74; 95% CI, 0.68-0.81; P?<?.001).Conclusions and relevanceIn this study, many nursing home residents with advanced dementia, especially men, received burdensome interventions and antibiotics in their final days of life. These findings appear to emphasize the need for sex-specific analysis in dementia research as well as the expansion of palliative care and end-of-life antimicrobial stewardship in nursing homes.

Project description:BACKGROUND:Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. METHODS:A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. RESULTS:486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. CONCLUSIONS:Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

Project description:IntroductionThe Norwegian regulations for nursing homes consider access to meaningful activities to be an indicator for the quality of nursing homes. Activities of daily living (ADL) provide important basic self-care skills for nursing home residents. Due to the physical changes caused by ageing and comorbidities, nursing home residents may experience functional decline over time, which may affect their ability to perform meaningful ADL, such as outdoor activity, which is considered a valuable and meaningful activity in Norwegian culture. This study aimed to investigate the association between ADL status, institution-dwelling and outdoor activity among nursing home residents.MethodsThis cross-sectional study included 784 residents aged >67 years living in 21 nursing homes in 15 Norwegian municipalities between November 2016 and May 2018. The Barthel Index was used to assess the nursing home residents' ADL status. Other variables collected were age, gender, body weight and height, visits per month, institution, ward, and participation in weekly outdoor activities. Descriptive statistics were used to provide an overview of the residents' characteristics. A Poisson regression model was used to test the association between the outdoor activity level as the dependent variable and ADL score, institution, and other control variables as independent variables.ResultsMore than half (57%) of the nursing home residents in this sample did not go outdoors. More than 50% of the residents had an ADL score <10, which indicates low performance status. Further, we found that residents' ADL status, institution, ward, and number of visits had an impact on how often the residents went outdoors.DiscussionThe nursing home residents in this study rarely went outdoors, which is interesting because Norwegians appreciate this activity. Differences in the number of visits might explain why some residents went outdoors more often than other residents did. Our findings also highlight that the institutions impact the outdoor activity. How the institutions are organized and how important this activity is considered to be in the institutions determine how often the activity is performed.ConclusionThe low frequency of the outdoor activities might be explained by a low ADL score. More than 50% of the residents had an ADL score <10, which indicates low performance status. Despite regulations for nursing home quality in Norway, this result suggests that organizational differences matter, which is an important implication for further research, health policy and practice.

Dataset Information

Differences in quality of life in home-dwelling persons and nursing home residents with dementia - a cross-sectional study.

Publications

Differences in quality of life in home-dwelling persons and nursing home residents with dementia - a cross-sectional study.

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