Assessing quality of life of nursing home residents with dementia: feasibility and limitations in patients with severe cognitive impairment

2013 ◽  
Vol 25 (10) ◽  
pp. 1687-1695 ◽  
Author(s):  
María Crespo ◽  
Carlos Hornillos ◽  
M. Mar Gómez
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Long Term Care ◽  
Self Report ◽  
Close Relative ◽  
Term Care ◽  
Severe Cognitive Impairment ◽  
People With Dementia

ABSTRACTBackground:The Quality of Life-Alzheimer's Disease Scale (QOL-AD) is a reliable and valid self-report measure for assessing quality of life (QoL) in people with dementia in long-term care settings, but little is known yet about the number of patients with severe cognitive impairment who are able to complete this measure, and the characteristics of those unable to do so. The aim of the study is to advance knowledge of these issues.Methods:Data on residents with dementia were collected from 11 nursing homes. The QOL-AD residential version was directly applied to residents with dementia diagnosis and Mini-Mental State Examination scores under 27, randomly selected in each center. Residents’ QoL was further assessed from the perspective of some close relative and some staff member. Altogether, 102 data sets from residents, 184 from relatives, and 197 from staff members were collected. An analysis of the characteristics of completers versus non-completers regarding levels of cognitive impairment was carried out.Results:People with dementia in long-term care are able to report their QoL. The QOL-AD completion rate decreases as the cognitive impairment level increases; non-completion is associated with greater overall impairment. About 30% of residents with severe cognitive impairment could self-report on their QoL with acceptable reliability.Conclusions:QoL self-rating should be the first-line option when assessing residents with severe cognitive impairment. For those that are not able to complete self-report measures, proxies’ report could be an alternative, although the development of other assessment procedures (e.g. observational) should be considered.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: protocol for a comprehensive Australian study

2015 ◽  
Vol 27 (10) ◽  
pp. 1739-1747 ◽  
Author(s):  
Elizabeth Beattie ◽  
Maria O’Reilly ◽  
Wendy Moyle ◽  
Lynn Chenoweth ◽  
Deirdre Fetherstonhaugh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Self Report ◽  
Care Staff ◽  
National Study ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities

ABSTRACTBackground:Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.Methods:The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.Conclusions:This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

scholarly journals Monitoring changes in the organization of Dutch long-term care and their effects on the mental health and wellbeing of people with dementia

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
H van der Roest ◽  
M Prins ◽  
J van Erp ◽  
E Hartstra ◽  
A van der Schot
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Nursing Homes ◽  
Long Term Care ◽  
Behavioral Symptoms ◽  
Term Care ◽  
People With Dementia ◽  
Over Time

Abstract Background The 'Living Arrangements for People with Dementia (LAFD)' monitor-study aims to provide insight into effects of changes in the organization of Dutch long-term care for people with dementia. The objective of this study is to evaluate changes over time in the level of cognitive impairment, the frequency and severity of behavioral symptoms, and quality of life of residents with dementia, and changes in staffing levels. The study allows for detection of trends and developments that are relevant for the quality of nursing home care. Methods The LAFD-study is a repeated cross-sectional study. Since 2008, assessments have been conducted in participating nursing homes every two year. Up to 2020, five assessments have been completed. The number of participating nursing homes over time ranged from 47 to 144 and a sample of one third of residents was included in the study. Data collection was performed by care professionals. Cognitive impairment was assessed with the Cognitive Performance Scale, frequency and severity of behavioral symptoms were assessed with the Neuropsychiatric Inventory; quality of life was assessed with de Qualidem. Per nursing home, the amount of direct provided care was inventoried. Results Assessments up to 2017/2018 showed an improvement in cognitive functioning and quality of life in Dutch nursing homes. The amount of behavioral problems did not change, as did the amount of direct care. However, the level of professional caregivers increased slightly. In the last assessment, 53 nursing homes participated, and 668 residents were included. The fast majority of participants was over 80 years of age (67.1%) and 68.5% were female. The data are currently being further analyzed and presented at the conference. Conclusions There is a trend of improvement in cognitive functioning and quality of life up to 2018. The most recent assessment will indicate whether these positive trends continue.

The association of perceived conflict with sadness for long-term care residents with moderate and severe dementia

Dementia ◽  
2016 ◽  
Vol 17 (7) ◽  
pp. 801-820
Author(s):  
Hannah M O'Rourke ◽  
Kimberly D Fraser ◽  
Wendy Duggleby ◽  
Norah Keating
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Long Term Care ◽  
Functional Dependence ◽  
Assessment Instrument ◽  
Severe Dementia ◽  
Term Care ◽  
People With Dementia

Objectives Research into the lived experiences of long-term care residents with dementia has identified perceived conflict, and its impact on sadness, as priorities for quality of life from the perspectives of people with dementia. However, whether and to what extent perceived conflict and sadness are associated has not been previously tested in this population. This study tested the associations between perceived conflicts with staff, family or friends and co-residents and their experience of sadness, and whether cognitive impairment or functional dependence modified these associations. Methods The study design was cross-sectional, correlational retrospective. Participants were 5001 residents of 613 long-term care facilities in Ontario, Canada with moderate and severe dementia. Clinical administrative data collected from 2012 to 2013 using the Resident Assessment Instrument 2.0 were used to measure the person's perception of conflicts with family/friends, staff, or co-residents, as well as verbal and non-verbal indicators of sadness. Hypotheses were tested using logistic regression, with cluster correction. Results Sadness (adjusting for age, sex, family/friend contact, pain, cognitive impairment, and functional dependence) was positively associated with perceived conflicts with family or friends (OR 1.91; 95% CI 1.26–2.88; p = 0.002) and staff (OR 1.51; 95% CI 1.07–2.13; p = 0.020). These associations did not differ depending on the level of cognitive impairment or functional dependence. The association between co-resident conflict and sadness was statistically significant for people with moderate (OR 2.02; 95% CI 1.45–2.82; p < 0.001) but not for those with severe dementia (OR 1.18; 95% CI 0.72–1.91; p = 0.511). Conclusion Long-term care residents with dementia who perceive conflict with others require support to maintain high quality relationships, particularly with family and friends. Future research should rigorously assess the modifiability of perceived conflict for people with moderate and severe dementia, and whether interventions to ameliorate perceived conflict result in decreased sadness and improved quality of life.

Assessing quality of life of older people with dementia in long-term care: a comparison of two self-report measures

2011 ◽  
Vol 21 (11-12) ◽  
pp. 1632-1640 ◽  
Author(s):  
Wendy Moyle ◽  
Natalie Gracia ◽  
Jenny E Murfield ◽  
Susan G Griffiths ◽  
Lorraine Venturato
Keyword(s):  
Quality Of Life ◽  
Older People ◽  
Long Term Care ◽  
Self Report ◽  
Term Care ◽  
People With Dementia

Art Activities and Quality of Life for People With Dementia in the Long Term Care Setting: A Case Series

2014 ◽  
Vol 15 (3) ◽  
pp. B3
Author(s):  
Rebecca S. King-Tucker ◽  
Rebecca S. King-Tucker ◽  
Maria Knupp ◽  
Terry Edwards ◽  
Elizabeth Walters
Keyword(s):  
Quality Of Life ◽  
Care Setting ◽  
Long Term Care ◽  
Case Series ◽  
Term Care ◽  
People With Dementia ◽  
Art Activities

scholarly journals The effects of placement on dementia care recipients’ and family caregivers’ quality of life: a literature review

2017 ◽  
Vol 18 (1) ◽  
pp. 44-57 ◽  
Author(s):  
Heehyul Moon ◽  
Peggye Dilworth-Anderson ◽  
Johannes Gräske
Keyword(s):  
Quality Of Life ◽  
Long Term Care ◽  
Research Literature ◽  
Term Care ◽  
Content Type ◽  
Care Recipients ◽  
People With Dementia ◽  
Care Facilities

Purpose The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.

scholarly journals Non-pharmacological interventions for improving quality of life of long-term care residents with dementia: a scoping review protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (12) ◽  
pp. e032661
Author(s):  
Abimbola A Akintola ◽  
Wilco P Achterberg ◽  
Monique A A Caljouw
Keyword(s):  
Quality Of Life ◽  
Scoping Review ◽  
Long Term Care ◽  
Pharmacological Interventions ◽  
Term Care ◽  
People With Dementia ◽  
Scoping Reviews ◽  
Review Protocol

IntroductionEvidence concerning the effectiveness of non-pharmacological interventions that are applied to people with dementia living in long-term care facilities is inconsistent. The purpose of this protocol is to describe the methodological considerations that will guide the completion of a scoping review that will inventorise and assess the effectiveness of the various non-pharmacological interventions that are documented in literature for improving quality of life of people with dementia living in long-term care.Methods and analysisThis scoping review will combine the methodology outlined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews and Guidance for conducting systematic scoping reviews by Peterset al. PubMed; MEDLINE; CINAHL; Embase; Cochrane Database of Systematic Reviews; Cochrane Central Register of Controlled Trials; Emcare; Sociological Abstracts and PsycINFO databases will be searched. Grey literature databases will also be explored. A two-stage screening process consisting of a title and abstract scan and a full-text review will be used to determine the eligibility of studies. Studies, irrespective of design, will be included that quantitatively assess quality of life of long-term care residents who receive non-pharmacological interventions for dementia. A pair of reviewers will independently assess all articles for eligibility, and all eligible articles will be abstracted and charted using a standardised form. The extracted data will undergo a ‘narrative review’ or a descriptive analysis of the contextual or process-oriented data and quantitative analysis reflecting the objectives of this scoping review.Ethics and disseminationResearch ethics approval is not required for this scoping review. This review started off in October 2018, anticipated end date is June 2020. We plan to disseminate this research through publications, presentations at relevant national and international conferences and meetings with relevant stakeholders. This scoping review protocol has been registered at Open Science Framework (https://osf.io/tupbv).

The association between aspects of daily life and quality of life of people with dementia living in long-term care facilities: a momentary assessment study

2016 ◽  
Vol 28 (8) ◽  
pp. 1323-1331 ◽  
Author(s):  
Hanneke C. Beerens ◽  
Bram de Boer ◽  
Sandra M.G. Zwakhalen ◽  
Frans E.S. Tan ◽  
Dirk Ruwaard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Interaction ◽  
Long Term Care ◽  
Daily Life ◽  
Positive Mood ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities

ABSTRACTBackground:To improve the quality of life (QoL) of people with dementia (PwD) living in long-term care facilities, insight into the association between QoL and how people spend their daily lives is urgently needed. This study investigated which aspects of daily life are related to QoL in dementia.Methods:An observational study was conducted. Daily life was assessed with the tablet-based Maastricht Electronic Daily Life Observation-tool (MEDLO-tool). Aspects included activity, engagement in the activity, social interaction, physical effort, mood, and agitation. QoL was assessed by formal nursing caregivers using the Quality of Life-Alzheimer's Disease scale (QoL-AD). A total of 9,660 momentary assessments were conducted.Results:The mean age of the 115 participants was 84 years and most (75%) were women. Bivariate analyses showed that residents with a higher QoL carried out less passive/purposeless activities (25% vs. 38%), were more engaged in active, expressive, and social activities, (40% vs. 27%), had more social interaction (34% vs. 22%), and had better mood scores (scale 1–7, 5.0 vs. 4.8), compared with residents with a lower QoL (allp-values < 0.001). Multivariate analyses showed that having more social interaction and a positive mood are related to a higher QoL.Conclusions:The results underline the importance of social interaction and a positive mood for a higher QoL. Future research should investigate the importance of engagement in activities in more detail.

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