scholarly journals Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

2020 ◽  
Vol 4 (4) ◽  
Author(s):  
Noorhazlina Ali ◽  
◽  
Cai Ning Tan ◽  
Jasmine Kang ◽  
Aik Phon Chew ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rating Scale ◽  
Tube Feeding ◽  
Cognitive Status ◽  
Dementia Care ◽  
Family Participation ◽  
Advanced Dementia ◽  
Person Centered Care ◽  
Centered Care

A locally-adapted, multisensory, psychosocial intervention called Namaste Care program was developed to improve the daily life of persons with advanced dementia (PwAD) through arranging meaningful activities and physical interactions by healthcare staff (Namaste Carers). Congruent with Asian values, the families of PwAD were invited to participate in Namaste Care sessions. The study aimed to explore the influence of Namaste Care on cognitive status and quality of life (QOL) of PwAD, and perceptions and attitudes of caregivers and Namaste Carers toward dementia care were determined. A total of 10 individuals, including patient-caregiver dyads (n = 4) and Namaste Carers (n = 6) participated in a program in a tertiary hospital in Singapore. Quality of Life in Late-Stage Dementia (QUALID) scale and Severe Impairment Rating Scale (SIRS) were employed to evaluate QOL and cognition, respectively, in the pre- and post-survey program in patient-caregiver dyads. Namaste Carers’ knowledge and attitudes toward PwAD were assessed using the Questionnaire on Palliative Care for Advanced Dementia (qPAD). Caregivers and Namaste carers were interviewed post-program separately. A concurrent explanatory mixed-method analysis was done. The mean age of PwAD was 84 years, with 75% (n = 3) patients on enteral tube feeding. Namaste carers were nurses with an average experience of 4.1 years in dementia care. On comparison of pre- and post-program scores of PwAD, QUALID scores showed a decrease (indicating an improvement in the QOL), while the SIRS scores were increased (indicating an improved cognitive response). Namaste Carers scored high on qPAD, reflecting the good understanding and a positive attitude toward PwAD. Thematic analysis of 10 interview transcripts from caregivers and Namaste Carers revealed three themes: the polarizing paradigm of care in advanced dementia; pre-eminence of the Asian family values, and theme of “small actions make a big difference”. Namaste Care served as a bridge between the person-centered care approach and the biomedical model of dementia care. Namaste Care with family participation may be the cornerstone of PwAD to receive culturally-appropriate personalized care and serve as a premise for the operationalization of person-centered care in Asian societies, and undeniably across the world.

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

scholarly journals Quality of life, depression and fatigue in mildly disabled patients with relapsing–remitting multiple sclerosis receiving subcutaneous interferon beta-1a: 3-year results from the COGIMUS (COGnitive Impairment in MUltiple Sclerosis) study

2011 ◽  
Vol 17 (8) ◽  
pp. 991-1001 ◽  
Author(s):  
F Patti ◽  
MP Amato ◽  
M Trojano ◽  
S Bastianello ◽  
MR Tola ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Interferon Beta ◽  
Rating Scale ◽  
Cognitive Status ◽  
Treatment Dose ◽  
Relapsing Remitting ◽  
Composite Scores

Background: The precise relationships among quality of life, depression, fatigue and cognitive impairment in multiple sclerosis (MS) are complex and poorly understood. Objective: To assess the effects of subcutaneous interferon beta-1a on quality of life, depression and fatigue over 3 years in the COGIMUS study, and to examine the relationship between these outcomes and baseline cognitive status. Methods: COGIMUS was an observational 3-year trial assessing cognitive function in 459 patients with relapsing–remitting MS treated with subcutaneous interferon beta-1a. Results: In total, 331 patients completed the study (168 received interferon beta-1a, 44 µg subcutaneously three times weekly, and 163 received interferon beta-1a, 22 µg subcutaneously three times weekly). Mean MS Quality of Life-54 (MSQoL-54) composite scores did not change over time. There were no significant differences between groups in MSQoL-54 composite scores when patients were grouped by treatment dose and baseline cognitive status. Mean (standard deviation) Hamilton Depression Rating Scale score decreased from 6.8 (4.9) at baseline to 5.8 (5.9) at year 3. Mean total Fatigue Impact Scale scores were low (<30) at all time points. Conclusion: Quality of life, depression and fatigue remained largely stable over 3 years; no effects of treatment dose or baseline cognitive status were found.

scholarly journals 414 - Supporting staff delivering person-centered care to people with dementia in Dutch nursing homes

2021 ◽  
Vol 33 (S1) ◽  
pp. 37-38
Author(s):  
Henriëtte van der Roest ◽  
Milan van der Kuil ◽  
Anouk Overbeek ◽  
Egbert Hartstra
Keyword(s):  
Nursing Homes ◽  
Living Arrangements ◽  
Online Survey ◽  
Dementia Care ◽  
Person Centered Care ◽  
People With Dementia ◽  
Modifiable Factors ◽  
Centered Care ◽  
Organizational Features

BackgroundPositive evidence has been found for person-centered care provisioning (PCC), the level of person- centeredness of care is positively associated with residents’ quality of life, quality of care an wellbeing.When providing PCC, care and support are provided in line with the needs, preferences and capacities of people with dementia. PCC is seen as the golden standard for dementia care. However, in nursing homes, needs and preferences of people with dementia are not always obvious, due to the relatively high levels of cognitive impairment. This, and amongst others time constraints might hinder high PCC by care professionals. Limited evidence show that certain organizational and environmental conditions, such as satisfactory leadership, interdisciplinary collaboration, and continuing education, lead to higher PCC. In order to facilitate care professionals as much as possible in providing PCC, more insight is desirable.ObjectiveThis study aims to provide more insight into the modifiable factors that contribute to PCC for people with dementia in Dutch nursing homes.MethodsA cross-sectional design was applied. Data were collected during the fifth assessment of the Living Arrangements for people with Dementia (LAD)-study from April 2019 until February 2020. Care professionals working in psychogeriatric units in nursing homes filled in an online survey. Organizational characteristics of participating nursing homes were inventoried.The level of PCC was assessed with the Dutch version of the ‘Person-centred care questionnaire’ (PCCq). Modifiable factors potentially impacting the level of provided PCC with regard to staff characteristics (e.g. autonomy, education), organizational features (e.g. size, involvement of family in care), and culture (e.g. learning climate) were included in multiple linear modelling.Preliminary resultsIn total 58 nursing home facilities were included in the study, and 814 care professionals completed the survey. Average PCCq score was 3.2 (SD = 0.4; range 0 to 4, higher scores indicating higher PCC).ConclusionFactors related to staff, and organizational features and culture, that contribute to PPC will be presented. The outcomes of the study will provide input for the optimal organization of dementia care, in order to support care professionals working in nursing homes to provide PCC.

scholarly journals DOES PERSON-CENTERED CARE CONTRIBUTE TO QUALITY OF LIFE?: GERMAN SHARED-HOUSING ARRANGEMENT RESULTS

2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 1012-1013
Author(s):  
K. Wolf-Ostermann ◽  
A. Schmidt ◽  
J. Graske
Keyword(s):  
Quality Of Life ◽  
Person Centered Care ◽  
Centered Care ◽  
Shared Housing

scholarly journals Impact of Enteral Tube Feeding Compared to Oral Hand Feeding on Mortality, Pneumonia, Hospitalization and Quality of Life in Patients With Advanced Dementia: A Review

2021 ◽  
Vol 5 (Supplement_2) ◽  
pp. 907-907
Author(s):  
Mackenzie Heisler ◽  
Vivian Huh ◽  
Ama Kyeremateng ◽  
Emily Lim ◽  
Briana Walsh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Studies ◽  
Clinical Outcomes ◽  
Tube Feeding ◽  
Cochrane Library ◽  
Advanced Dementia ◽  
Enteral Tube Feeding ◽  
Nonsignificant Increase ◽  
Increased Risk

Abstract Objectives To assess the effectiveness of enteral tube feeding in comparison to oral hand feeding in improving survival, hospitalization, pneumonia incidence, and quality of life in adults 60 years and older with advanced dementia. Methods PubMed, CINAHL, Cochrane Library, and Academic Search Premier, supplemented by hand-searching, were probed for articles published between January 2006-June 2020. Eligible articles compared clinical outcomes (mortality, survival, pneumonia, hospitalization, and quality of life) amongst patients 60 years and older with advanced dementia, fed via an enteral tube or oral hand-feeding route. Of the 53 articles screened and assessed, 4 cohort studies involving 508 patients were extracted after excluding based on the above criteria and summarized for this review. Results Of the 4 articles, 3 were prospective cohort studies and 1 was a retrospective cohort study. Half of the studies reported significantly increased rates of mortality in groups of advanced dementia patients fed via enteral tube. Meanwhile, 1 study reported a similar nonsignificant increase in mortality rates in those fed via oral hand route. Half of the studies indicated a nonsignificant increase in hospitalization frequency for those fed via enteral tube. Additionally, 1 study reported an increased risk of pneumonia in patients fed via nasogastric tube. Regarding quality of life, 1 article reported significantly increased complaints of pain and discomfort from patients fed via oral hand feeding, that severity of dementia may have contributed to. Conclusions Concerning clinical outcomes and mortality, these findings suggest no significant advantage to using enteral tube feeding options in older patients with advanced dementia. Thus, the healthcare professional should place primary emphasis on the patient's advance directives and provide the primary caregiver a thorough review of feeding options. Funding Sources None.

scholarly journals Hypomimia in Parkinson's Disease: What Is It Telling Us?

2021 ◽  
Vol 11 ◽  
Author(s):  
Teresa Maycas-Cepeda ◽  
Pedro López-Ruiz ◽  
Cici Feliz-Feliz ◽  
Lidia Gómez-Vicente ◽  
Rocío García-Cobos ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Rating Scale ◽  
Depressive Symptomatology ◽  
Cognitive Status ◽  
Blink Rate ◽  
Nonmotor Symptoms ◽  
Timed Tests

Introduction: Amimia is one of the most typical features of Parkinson's disease (PD). However, its significance and correlation with motor and nonmotor symptoms is unknown. The aim of this study is to evaluate the association between amimia and motor and nonmotor symptoms, including cognitive status, depression, and quality of life in PD patients. We also tested the blink rate as a potential tool for objectively measuring upper facial bradykinesia.Methods: We prospectively studied amimia in PD patients. Clinical evaluation was performed using the Unified Parkinson's Disease Rating Scale (UPDRS) and timed tests. Cognitive status, depression, and quality of life were assessed using the Parkinson's Disease Cognitive Rating Scale (PD-CRS), the 16-Item Quick Inventory of Depressive Symptomatology (QIDS-SR16), and the PDQ-39, respectively. Amimia was clinically evaluated according to item 19 of UPDRS III. Finally, we studied upper facial amimia by measuring resting blink frequency and blink rate during spontaneous conversation.Results: We included 75 patients. Amimia (item 19 UPDRS III) correlated with motor and total UPDRS (r: 0.529 and 0.551 Spearman), and its rigidity, distal bradykinesia, and motor axial subscores (r: 0.472; r: 0.252, and r: 0.508, respectively); Hoehn and Yahr scale (r: 0.392), timed tests, gait freezing, cognitive status (r: 0.29), and quality of life (r: 0.268) correlated with amimia. Blinking frequency correlated with amimia (measured with item 19 UPDRS), motor and total UPDRS.Conclusion: Amimia correlates with motor (especially axial symptoms) and cognitive situations in PD. Amimia could be a useful global marker of overall disease severity, including cognitive decline.

How Is Quality of Life Assessed in People With Dementia? A Systematic Literature Review and a Primer for Speech-Language Pathologists

2020 ◽  
Vol 29 (3) ◽  
pp. 1702-1715
Author(s):  
Sabine Heuer ◽  
Rebecca Willer
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Well Being ◽  
Self Report ◽  
Speech Language Pathologists ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Purpose The purpose of this study was to determine how quality of life (QoL) is measured in people with dementia involved in interventions designed to improve well-being and to explore how those measures align with principles of person-centered care. Method A systematic literature review was conducted utilizing PsychInfo, CINAHL, and PubMed and combinations of the search terms: “dementia,” “outcome measure,” “creative engagement,” “creative intervention,” “TimeSlips,” “art,” “quality of life,” and “well-being.” The search was limited to studies published in peer-reviewed journals that reported outcomes for people with dementia in response to a creative intervention. Results Across the 24 reviewed studies, 30 different outcome measures were reported including eight self-reported, nine observational, and 13 proxy-reported measures. Self-report of QoL was elicited 16 times, observational measures were reported 17 times, and proxy-reported measures were used 28 times. All measures were used with participants across the dementia severity spectrum. Conclusion Current clinical practice of QoL evaluation does not align well with person-centered care principles of self-determination based on the low proportion of self-report. The previously reported limitations of proxy-report have been in part confirmed with this study. Implications of the findings for speech-language pathologists are discussed.

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