Supporting autonomy of nursing home residents with dementia in the informed consent process

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2821-2835 ◽  
Author(s):  
Elizabeth Beattie ◽  
Maria O’Reilly ◽  
Deirdre Fetherstonhaugh ◽  
Mitchell McMaster ◽  
Wendy Moyle ◽  
...  
Keyword(s):  
Nursing Home ◽  
Cognitive Impairment ◽  
Informed Consent ◽  
Nursing Home Residents ◽  
Consent Process ◽  
Cognitive Test ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Gender And Age

Background In studies involving people with dementia, researchers have historically defaulted to seeking consent from a proxy, the assumption being that people with dementia are unable to provide their own informed consent. This choice denies people with dementia a voice in the consent process, thus disregarding their autonomy and agency. Recently, other options for improving the consent process have been explored. Objective This study aimed to determine whether nursing home residents with dementia could demonstrate an ability to provide their own informed consent as determined by the Evaluation to Sign Consent instrument. Methods As part of a larger study on the quality of life of nursing home residents, the Evaluation to Sign Consent was administered to 392 people diagnosed with dementia. Data on demographic variables, such as gender and age, as well as level of cognitive impairment, were also collected. Results Just over one-fifth (22%) of the residents with dementia were judged as having the capacity to provide their own informed consent to participate in this specific research project. Consistent with existing literature, capacity to consent was significantly, and negatively, associated with cognitive impairment. Conclusion This study demonstrates that assuming all people diagnosed with dementia are unable to provide informed consent for research on the basis of cognitive test scores, or on clinical assessment alone, potentially denies them the autonomy to make a decision that they may be capable of making. Research involving people with mild-to-moderate dementia needs to consider evaluating whether potential participants have the capacity to provide their own consent.

scholarly journals Factors Influencing the Deterioration from Cognitive Decline of Normal Aging to Dementia among Nursing Home Residents

2020 ◽  
Author(s):  
Audai A. Hayajneh ◽  
Mohammad Rababa ◽  
Alia A. Alghwiri ◽  
Dina Masha'al
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Nursing Homes ◽  
Nursing Home Residents ◽  
Bivariate Analysis ◽  
Medical Factors ◽  
Moderate Cognitive Impairment

Abstract Background: A dearth of differential research exists regarding the determinants of mild cognitive impairment (MCI) and moderate cognitive impairment or dementia among nursing home residents. This study aimed to identify and examine the association between medical factors (number of comorbidities, hospitalization, disability, depression, frailty and quality of life) and moderate cognitive impairment or dementia in nursing homes residents.Methods: A cross-sectional design was used in this study. Convenience sampling of 182 participants was conducted in nursing homes located in the central part of Jordan. Montreal cognitive assessment (MoCA) was used to screen both MCI and moderate cognitive impairment or dementia. Bivariate analysis, including t-test and ANOVA test, and logistic and linear regression models were used to examine and identify the medical factors associated with moderate cognitive impairment or dementia compared to mild cognitive impairment.Results: Most nursing home residents had MCI (87.4%) compared to a few with moderate cognitive impairment or dementia. Age (t = -2.773), number of comorbidities (t = -4.045), depression (t = -4.809), frailty (t = -4.038), and quality of life physical (t = 3.282) and mental component summaries (t = 2.469) were significantly different between the stages of cognitive impairment. Marital status (t = -4.050, p < 0.001), higher-income (t = 3.755, p < 0.001), recent hospitalization (t = 2.622,p = 0.01), depression (t = -2.737, p = 0.007), and frailty (t = 2.852, p = 0.005) were significantly associated with mental ability scores among nursing home residents.Conclusion: The coexistence of comorbidities and depression among nursing home residents with MCI necessitates prompt management by healthcare providers to combat depressive symptoms in order to delay the dementia trajectory among at-risk residents.Trail registration number: ClinicalTrials.gov Identifier: NCT04589637

scholarly journals Factors influencing the deterioration from cognitive decline of normal aging to dementia among nursing home residents

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Audai A. Hayajneh ◽  
Mohammad Rababa ◽  
Alia A. Alghwiri ◽  
Dina Masha’al
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Nursing Homes ◽  
Nursing Home Residents ◽  
Bivariate Analysis ◽  
Medical Factors ◽  
Moderate Cognitive Impairment

Abstract Background A dearth of differential research exists regarding the determinants of mild cognitive impairment (MCI) and moderate cognitive impairment or dementia among nursing home residents. This study aimed to identify and examine the association between medical factors (number of comorbidities, hospitalization, disability, depression, frailty and quality of life) and moderate cognitive impairment or dementia in nursing homes residents. Methods A cross-sectional design was used in this study. Convenience sampling of 182 participants was conducted in nursing homes located in the central part of Jordan. Montreal cognitive assessment (MoCA) was used to screen both MCI and moderate cognitive impairment or dementia. Bivariate analysis, including t-test and ANOVA test, and logistic and linear regression models were used to examine and identify the medical factors associated with moderate cognitive impairment or dementia compared to mild cognitive impairment. Results Most nursing home residents had MCI (87.4%) compared to a few with moderate cognitive impairment or dementia. Age (t = − 2.773), number of comorbidities (t = − 4.045), depression (t = − 4.809), frailty (t = − 4.038), and quality of life physical (t = 3.282) and mental component summaries (t = 2.469) were significantly different between the stages of cognitive impairment. Marital status (t = − 4.050, p <  0.001), higher-income (t = 3.755, p <  0.001), recent hospitalization (t = 2.622,p = 0.01), depression (t = − 2.737, p = 0.007), and frailty (t = 2.852, p = 0.005) were significantly associated with mental ability scores among nursing home residents. Conclusion The coexistence of comorbidities and depression among nursing home residents with MCI necessitates prompt management by healthcare providers to combat depressive symptoms in order to delay the dementia trajectory among at-risk residents. Trail registration ClinicalTrials.gov NCT04589637, October 15,2020, Retrospectively registered.

Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study

Dementia ◽  
2016 ◽  
Vol 16 (2) ◽  
pp. 204-218 ◽  
Author(s):  
Catherine Travers
Keyword(s):  
Nursing Home ◽  
Pilot Study ◽  
Nursing Home Residents ◽  
Significant Treatment ◽  
Qualitative Feedback ◽  
Intervention Measures ◽  
People With Dementia ◽  
Moderate Dementia ◽  
University Of Louisville ◽  
The University

This pilot study aimed to assess the feasibility and acceptability of a behavioral activities intervention (BE-ACTIV) in Australian nursing homes. BE-ACTIV was developed by researchers at the University of Louisville, USA, to improve mood and quality of life (QOL) in nursing home residents with mild to moderate dementia. An eight-week trial was conducted and 10 residents with mild to moderate dementia received the BE-ACTIV intervention while eight residents received a Walking and Talking intervention. Measures of depression (GDS-12R) and QOL (QOL-AD-NH) were administered prior to and following the interventions. Qualitative feedback indicated residents benefited from BE-ACTIV, evident by improved mood, although no statistically significant treatment effect was found. Moreover, the intervention was found to be feasible and acceptable to Australian nursing home staff and our findings highlight the importance of individualizing activities for people with dementia, of which 1:1 staff attention was a key component.

Quality of dying of nursing home residents with dementia as judged by relatives

2013 ◽  
Vol 25 (10) ◽  
pp. 1697-1707 ◽  
Author(s):  
Nicole van Uden ◽  
Lieve Van den Block ◽  
Jenny T. van der Steen ◽  
Bregje D. Onwuteaka-Philipsen ◽  
An Vandervoort ◽  
...  
Keyword(s):  
Nursing Home ◽  
Quality Of Care ◽  
Retrospective Study ◽  
Nursing Homes ◽  
The Netherlands ◽  
Nursing Home Residents ◽  
Quality Of Dying ◽  
People With Dementia ◽  
Number Of Patients

ABSTRACTBackground:Providing good quality care for the growing number of patients with dementia is a major challenge. There is little international comparative research on how people with dementia die in nursing homes. We compared the relative's judgment on quality of care at the end of life and quality of dying of nursing home residents with dementia in Belgium and the Netherlands.Methods:This was a Belgian cross-sectional retrospective study (2010) combined with a prospective and retrospective study from the Netherlands (January 2007–July 2011). Relatives of deceased residents of 69 Belgian and 34 Dutch nursing homes were asked to complete questionnaires. We included 190 and 337 deceased nursing home residents with dementia in Belgium and the Netherlands, respectively.Results:Of all identified deceased nursing home residents with dementia, respectively 53.2% and 74.8% of their relatives in Belgium and the Netherlands responded. Comfort while dying (CAD-EOLD, range 14–42) was rated better for Dutch nursing home residents than for Belgian nursing homes residents (26.1 vs. 31.1, OR 4.5, CI 1.8–11.2). We found no differences between countries regarding Satisfaction With Care (SWC-EOLD, range 10–40, means 32.5 (the Netherlands) and 32.0 (Belgium)) or symptom frequency in the last month of life (SM-EOLD, range 0–45, means 26.4 (the Netherlands) and 27.2 (Belgium)).Conclusion:Although nursing home structures differ between Belgium and the Netherlands, the quality of care in the last month of life for residents with dementia is similar according to their relatives. However, Dutch residents experience less discomfort while dying. The results suggest room for improved symptom management in both countries and particularly in the dying phase in Belgium.

scholarly journals A Tablet ‐ Based Intervention for Activating Nursing Home Residents with Dementia: Results from a Cluster-Randomised Controlled Trial

2021 ◽  
Author(s):  
Julie Lorraine O'Sullivan ◽  
Sonia Lech ◽  
Paul Gellert ◽  
Ulrike Grittner ◽  
Jan-Niklas Voigt-Antons ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
Psychotropic Medication ◽  
Controlled Trial ◽  
Depression Scale ◽  
Nursing Home Residents ◽  
Pharmacological Intervention ◽  
People With Dementia

Abstract Objectives: To investigate global and momentary effects of a tablet-based non-pharmacological intervention for nursing home residents living with dementia.Design: Cluster-randomized controlled trial.Setting: Ten nursing homes in Germany were randomly allocated to the tablet-based intervention (TBI, 5 units) or conventional activity sessions (CAS, 5 units).Participants: N = 162 residents with dementia. Intervention: Participants received regular TBI (n = 80) with stimulating activities developed to engage people with dementia or CAS (n = 82) for eight weeks.Measurements: Apathy Evaluation Scale (AES-I, primary outcome), Quality of Life in Alzheimer’s Disease scale, QUALIDEM scale, Neuropsychiatric Inventory, Geriatric Depression Scale and psychotropic medication (secondary outcomes). Momentary quality of life was assessed before and after each activity session. Participants and staff were blinded until collection of baseline data was completed. Data was analyzed with linear mixed-effects models.Results: Levels of apathy decreased slightly in both groups (mean decrease in AES-I of .61 points, 95%CI: -3.54 to 2.33 for TBI and .36 points, 95%CI: -3.27 to 2.55 for CAS). Group difference in change of apathy was not statistically significant (B = .25; 95%CI: -3.89 to 4.38, p = .91). This corresponds to a standardized effect size (Cohen’s d) of .02. A reduction of psychotropic medication was found for TBI compared to CAS. Further analyses revealed a post-intervention improvement in QUALIDEM scores across both groups and short-term improvements of momentary quality of life in the CAS group.Conclusions: Our findings suggest that interventions involving tailored activities have a beneficial impact on global and momentary quality of life in nursing home residents with dementia. Although we found no clear advantage of TBI compared to CAS, tablet computers can support delivery of non-pharmacological interventions in nursing homes and facilitate regular assessments of fluctuating momentary states. Funding: German National Association of Statutory Health Insurance Funds. Registry: ISRCTN98947160.

scholarly journals Factors Influencing the Deterioration from Cognitive Decline of Normal Aging to Dementia among Nursing Home Residents

2020 ◽  
Author(s):  
Audai A. Hayajneh ◽  
Mohammad Rababa ◽  
Alia A. Alghwiri ◽  
Dina Masha'al
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Nursing Homes ◽  
Nursing Home Residents ◽  
Bivariate Analysis ◽  
Medical Factors ◽  
Moderate Cognitive Impairment

Abstract Background: A dearth of differential research exists regarding the determinants of mild cognitive impairment (MCI) and moderate cognitive impairment or dementia among nursing home residents. This study aimed to identify and examine the association between medical factors (number of comorbidities, hospitalization, disability, depression, frailty and quality of life) and moderate cognitive impairment or dementia in nursing homes residents.Methods: A cross-sectional design was used in this study. Convenience sampling of 182 participants was conducted in nursing homes located in the central part of Jordan. Montreal cognitive assessment (MoCA) was used to screen both MCI and moderate cognitive impairment or dementia. Bivariate analysis, including t-test and ANOVA test, and logistic and linear regression models were used to examine and identify the medical factors associated with moderate cognitive impairment or dementia compared to mild cognitive impairment.Results: Most nursing home residents had MCI (87.4%) compared to a few with moderate cognitive impairment or dementia. Age (t = -2.773), number of comorbidities (t = -4.045), depression (t = -4.809), frailty (t = -4.038), and quality of life physical (t = 3.282) and mental component summaries (t = 2.469) were significantly different between the stages of cognitive impairment. Marital status (t = -4.050, p < 0.001), higher-income (t = 3.755, p < 0.001), recent hospitalization (t = 2.622,p = 0.01), depression (t = -2.737, p = 0.007), and frailty (t = 2.852, p = 0.005) were significantly associated with mental ability scores among nursing home residents.Conclusion: The coexistence of comorbidities and depression among nursing home residents with MCI necessitates prompt management by healthcare providers to combat depressive symptoms in order to delay the dementia trajectory among at-risk residents.Trail registration: ClinicalTrials.gov NCT04589637, October 15,2020, Retrospectively registered.

scholarly journals Factors Influencing the Deterioration from Cognitive Decline of Normal Aging to Dementia among Nursing Home Residents

2020 ◽  
Author(s):  
Audai A. Hayajneh ◽  
Mohammad Rababa ◽  
Alia A. Alghwiri ◽  
Dina Masha'al
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Nursing Homes ◽  
Nursing Home Residents ◽  
Bivariate Analysis ◽  
Medical Factors ◽  
Moderate Cognitive Impairment

Abstract Background: A dearth of differential research exists regarding the determinants of mild cognitive impairment (MCI) and moderate cognitive impairment or dementia among nursing home residents. This study aimed to identify and examine the association between medical factors (number of comorbidities, hospitalization, disability, depression, frailty and quality of life) and moderate cognitive impairment or dementia in nursing homes residents.Methods: A cross-sectional design was used in this study. Convenience sampling of 182 participants was conducted in nursing homes located in the central part of Jordan. Montreal cognitive assessment (MoCA) was used to screen both MCI and moderate cognitive impairment or dementia. Bivariate analysis, including t-test and ANOVA test, and logistic and linear regression models were used to examine and identify the medical factors associated with moderate cognitive impairment or dementia compared to mild cognitive impairment.Results: Most nursing home residents had MCI (87.4%) compared to a few with moderate cognitive impairment or dementia. Age (t = -2.773), number of comorbidities (t = -4.045), depression (t = -4.809), frailty (t = -4.038), and quality of life physical (t = 3.282) and mental component summaries (t = 2.469) were significantly different between the stages of cognitive impairment. Marital status (t = -4.050, p < 0.001), higher-income (t = 3.755, p < 0.001), recent hospitalization (t = 2.622,p = 0.01), depression (t = -2.737, p = 0.007), and frailty (t = 2.852, p = 0.005) were significantly associated with mental ability scores among nursing home residents.Conclusion: The coexistence of comorbidities and depression among nursing home residents with MCI necessitates prompt management by healthcare providers to combat depressive symptoms in order to delay the dementia trajectory among at-risk residents. Trail registration: ClinicalTrials.gov NCT04589637, October 15,2020, Retrospectively registered.

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