scholarly journals Comparing proxy rated quality of life of people living with dementia in care homes

2019 ◽  
Vol 50 (1) ◽  
pp. 86-95 ◽  
Author(s):  
S. Robertson ◽  
C. Cooper ◽  
J. Hoe ◽  
K. Lord ◽  
P. Rapaport ◽  
...  

AbstractBackgroundImproving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.MethodsWe compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.ResultsStaff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.ConclusionProxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 805-821 ◽  
Author(s):  
Frank Keating ◽  
Laura Cole ◽  
Robert Grant

Dementia has been identified as one of the major challenges in the 21st Century. The detrimental effects of dementia can jeopardise personhood, thus person-centred interventions including reminiscence and arts practice have been recommended as tools to promote social inclusion and improve the quality of life. This study aimed to evaluate the effectiveness of group reminiscence arts sessions for people living with dementia in care homes (residential and nursing homes) using a comparative and time series design to collect data on quality of life. The intervention was conducted in six care homes in London over a period of 24 weeks and compared with six care homes not receiving the intervention (control). Dementia Care Mapping was used as the primary data collection instrument to measure positive behaviours and rate quality of life before, during and after group reminiscence arts sessions. The evaluation team observed the sessions at three-weekly intervals. Statistical modelling found that positive behaviours and quality of life of care home residents participating in group reminiscence arts sessions increased over the 24-week period. Well-being increased sharply during each session and plateaued at 50 minutes with a sustained positive effect after the sessions. On a longer timescale, well-being and quality of life increased slowly and steadily from one session to the next. The findings were statistically significant ( p < 0.001). The study concludes that group reminiscence arts sessions can have a positive and sustained impact on the quality of life of people with dementia. However, the evidence on the sustainability of the effect over time remains unknown. More research is needed to assess in much greater depth the association between quality of life and group reminiscence arts sessions.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 275-276
Author(s):  
Jose Aravena ◽  
Jean Gajardo ◽  
Laura Gitlin

Abstract In a scenario of increasing longevity and social inequalities, Latin-America is an important contributor to the worldwide dementia burden. Caregivers’ health is fundamental to maintain the person with dementia quality of life. However, caregiving is a culturally sensible role that requires tailored solutions. The aim is to synthesize the evidence about non-pharmacologic interventions targeted to caregivers of people with dementia in Latin-American contexts. A comprehensive review of interventions in caregivers and persons with dementia in Latin-American countries was conducted using MEDLINE, Embase, PsycINFO, and Scopus with studies published until January 27th, 2020. Randomized clinical trials of non-pharmacologic interventions targeted to caregivers of people with dementia or dyads where included. Qualitative synthesis of the evidence was presented and analyzed. Overall, 9 pilot RCT were included for the final analysis (6 Brazil, 1 Colombia, 1 Mexico, 1 Perú). The biggest study recruited 69 caregivers and the smallest 13 dyads, with follow-up range of 3-6 months. 5 control groups received at least some other non-standard care type of intervention. 8 were targeted exclusively to caregivers (4 group intervention, 3 individual, and 1 combined) and 1 multicomponent intervention. Most frequent measured outcomes were caregiver’s burden, anxiety, depressive symptoms, and quality of life, and person with dementia neuropsychiatric symptoms. Individual interventions report better results in caregiver parameters such as burden and depressive symptoms and person with dementia neuropsychiatric symptoms. Group interventions presented mixed results. Nevertheless, the quality of evidence was low. There is a critical need to study interventions for caregivers in Latin-American contexts.


2012 ◽  
Vol 24 (6) ◽  
pp. 856-870 ◽  
Author(s):  
Claudia Cooper ◽  
Naaheed Mukadam ◽  
Cornelius Katona ◽  
Constantine G. Lyketsos ◽  
David Ames ◽  
...  

ABSTRACTBackground: People with dementia report lower quality of life, but we know little about what interventions might improve it.Methods: We systematically reviewed 20 randomized controlled trials reporting the effectiveness of non-pharmacological interventions in improving quality of life or well-being of people with dementia meeting predetermined criteria. We rated study validity with a checklist. We contacted authors for additional data. We calculated standardized mean differences (SMD) and, for studies reporting similar interventions, pooled standardized effect sizes (SES).Results: Pooled analyses found that family carer coping strategy-based interventions (four studies, which did not individually achieve significance; n = 420; SES 0.24 (range 0.03–0.45)) and combined patient activity and family carer coping interventions (two studies, not individually significant; n = 191; SES 0.84 (range 0.54–1.14)) might improve quality of life. In one high-quality study, a care management system improved quality of life of people with dementia living at home. Group Cognitive Stimulation Therapy (GCST) improved quality of life of people with dementia in care homes.Conclusion: Preliminary evidence indicated that coping strategy-based family carer therapy with or without a patient activity intervention improved quality of life of people with dementia living at home. GCST was the only effective intervention in a higher quality trial for those in care homes, but we did not find such evidence in the community. Few studies explored whether effects continued after the intervention stopped. Future research should explore the longer-term impact of interventions on, and devise strategies to increase, life quality of people with dementia living in care homes or at home without a family carer.


2019 ◽  
pp. 1-15 ◽  
Author(s):  
Laura J. Hughes ◽  
Nicolas Farina ◽  
Thomas E. Page ◽  
Naji Tabet ◽  
Sube Banerjee

ABSTRACTBackground:Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings.Design:Systematic review.Methods:Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review.Results:Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use.Conclusions:Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.


BJPsych Open ◽  
2017 ◽  
Vol 3 (4) ◽  
pp. 171-178 ◽  
Author(s):  
Gill Livingston ◽  
Julie Barber ◽  
Louise Marston ◽  
Penny Rapaport ◽  
Deborah Livingston ◽  
...  

BackgroundAgitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia.AimsTo report, in a large care home survey, prevalence and determinants of agitation in residents with dementia.MethodWe interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score.ResultsOut of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91).ConclusionsCare home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing.


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