scholarly journals Assessing Determinants of Perceived Quality in Transitions for People with Dementia: a Prospective Observational Study

2019 ◽  
Vol 22 (1) ◽  
pp. 13-22 ◽  
Author(s):  
Neil Drummond ◽  
Lynn McCleary ◽  
Linda Garcia ◽  
Katherine McGilton ◽  
Frank Molnar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Longitudinal Design ◽  
Outcome Variable ◽  
Dementia Caregiver ◽  
Clinical Encounters ◽  
Summative Assessments ◽  
People With Dementia ◽  
Person With Dementia ◽  
Prospective Longitudinal

BackgroundThe trajectory of dementia through time is characterized by common transitions which are difficult for persons with dementia (PWDs) and their families and friends. Our study sought to identify determinants for the quality of transition outcomes.MethodA 24-month, prospective, longitudinal design identified specific transitions as they occurred in 108 person-with-dementia/caregiver dyads, and assessed the perceived transition quality from the perspective of the caregiver and what we denote as the ‘summative’ transition quality outcome variable (as explained in the Data Processing section under Methods).ResultsAmong caregivers and during the authors’ deliberations of the summative transition quality outcomes, good transition quality was associated with the PWD’s baseline Disability Assessment for Dementia (OR 1.04, 95% CI 1.02-1.06 per increase in percent score based on summative assessments), and with the PWD’s higher baseline quality of life scores (OR 1.11, 95% CI 1.05-1.18 per increase in unit of score in QOL-AD based on summative assessments). Caregiver-perceived better outcome quality was associated with lower caregiver burden, (OR 0.97, 95% CI 0.95-0.99 per unit CBI score increase).ConclusionIdentifying determinants of successful transitions is feasible and may be translated into practical guidance for use in clinical encounters. Those with worse prior quality of life or worse performance in activities of daily living appear to require specific support during transitions, as do those whose caregivers report higher levels of burden.

scholarly journals Non-Pharmacologic Interventions for Caregivers of People With Dementia in Latin America: A Review

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 275-276
Author(s):  
Jose Aravena ◽  
Jean Gajardo ◽  
Laura Gitlin
Keyword(s):  
Quality Of Life ◽  
Latin America ◽  
Depressive Symptoms ◽  
Latin American ◽  
Randomized Clinical Trials ◽  
Social Inequalities ◽  
Neuropsychiatric Symptoms ◽  
People With Dementia ◽  
Person With Dementia

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.

scholarly journals Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel-group randomised controlled feasibility study with waiting-list control

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Becky Dowson ◽  
Justine Schneider ◽  
Boliang Guo ◽  
Philip M. Bath ◽  
Orii McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Waiting List ◽  
Community Group ◽  
People With Dementia ◽  
Parallel Group ◽  
Randomised Controlled ◽  
Person With Dementia

Abstract Background As the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study. Methods The PRESIDE study is designed as a two-arm, parallel-group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n = 80) and their carer (n = 80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away or to wait for 3 months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 min, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and 3 and 6 months post-baseline. Discussion Despite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers. Trial registration Unique identification number in ISRCTN registry: ISRCTN10201482. Date registered: 12 May 2020

scholarly journals Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel group randomised controlled feasibility study with waiting-list control

2020 ◽  
Author(s):  
Becky Dowson ◽  
Justine Schneider ◽  
Boliang Guo ◽  
Philip M Bath ◽  
Orii McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Waiting List ◽  
Community Group ◽  
People With Dementia ◽  
Parallel Group ◽  
Randomised Controlled ◽  
Person With Dementia

Abstract BackgroundAs the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study.MethodsThe PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. DiscussionDespite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.Trial RegistrationUnique identification number in ISRCTN registry: ISRCTN10201482 https://www.isrctn.com/ISRCTN10201482. Date registered: 12/05/2020

scholarly journals Literature review: technological interventions and their impact on quality of life for people living with dementia

2020 ◽  
Vol 27 (1) ◽  
pp. e100064
Author(s):  
David Sanders ◽  
Philip Scott
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Dementia Care ◽  
Assistive Technologies ◽  
Healthcare Sector ◽  
Supporting Evidence ◽  
Technological Advancement ◽  
People With Dementia ◽  
Person With Dementia

ObjectivesRapid technology-driven innovation in the healthcare sector has led to an increasing ability to effectively respond to health challenges. However, the cognitive challenges faced by a person with dementia exacerbate the difficulty of designing enduring technological dementia care solutions. Despite this, and in the absence of a cure, facilitating well-being and improved quality of life becomes pivotal for those living with dementia and their caregivers. This review aimed to identify and consolidate the provision of technological solutions for dementia care, and how these are perceived to impact the quality of life of a person with dementia.MethodsArticles and journals were identified using keywords including those relating to quality of life, assistive technologies and technology adoption and acceptance. Greater priority was given to resources published after 2010 due to the speed of technological advancement, and peer-reviewed articles were preferred.Results91 resources were identified, with 38 contributing to the final review. In addition to multiple quality of life measurement tools, the literature identified a large variety of solutions that fell into three categories: those used ‘by’, ‘with’ or ‘on’ a person with dementia.ConclusionsThis review concludes that the ‘one size fits all’ approach to many solutions reflects the lack of supporting evidence, negatively impacting trust in their usefulness among caregivers and their subsequent adoption rates. This could be attributed to limited involvement of people with dementia in studies of effectiveness and adoption. Additional research is recommended to further consolidate research on quality of life and to understand the individuality and progression of dementia and its influence on dementia care solutions.

scholarly journals “I Know Who I Am; the Real Me, and That Will Come Back”

2017 ◽  
Vol 28 (2) ◽  
pp. 119-140 ◽  
Author(s):  
Tamsin MacBride ◽  
Emma Miller ◽  
Belinda Dewar
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Members ◽  
The Real ◽  
Core Theme ◽  
The Core ◽  
People With Dementia ◽  
Care Systems ◽  
Person With Dementia

Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care.

scholarly journals 309 - Quality of life in caregiver in a gender perspective

2020 ◽  
Vol 32 (S1) ◽  
pp. 67-67
Author(s):  
Heidi Bjørge ◽  
Kari Kvaal ◽  
Ingun Ulstein
Keyword(s):  
Quality Of Life ◽  
Protective Factor ◽  
Longitudinal Design ◽  
Common Factor ◽  
Family Relationship ◽  
People With Dementia ◽  
Depressive Feelings ◽  
Male Caregivers ◽  
One Year

Background and aimPeople with dementia depend on a relative to be able to stay at home longer However, being a caregiver has shown to influence on their quality of life (QoL). Depression is the most common factor associated with low caregiver QoL, while relational factors have shown to be a protective factor. Less is known about how female and male caregivers approve to the caregiving demands, and thus how these demands influence their QoL. In this study, we aimed at investigating what factors influenced on QoL related to gender and how these fluctuated with time.MethodIn this longitudinal design, a total of 208 caregivers, 158 female mean age 62.5 and 50 male caregivers, mean age 67.9 were assessed for Quality of Life-Alzheimer Disease (QoL). In addition, depression, family relationship and caregivers’ burden of care were assessed. Linear regression analyses were applied to explore the bivariate and multivariate associations between the dependent variable QoL and potential explanatory variables.The same questionnaires were completed at one-year follow-up, and the results from the remaining 176 caregivers were compared with their baseline scorings.ResultsCaregivers’ depressive feelings were the strongest predictors of caregivers’ QoL. What differed in the explained perceived QoL was feeling of social isolation in female caregivers, and male caregivers’ perception of their care receivers’ emotionally overinvolved attitude towards them. Additionally, female caregivers expressed a higher burden and cared for a relative more affected by their dementia. After one year, their QoL declined, more for male than female, while their level of depressive feelings, distress and level of EOI remained unchanged.ConclusionThe study revealed that except for depressive feelings, female and male caregivers faced their caring experience, differently. The implication of these findings is that gender must be considered when planning for interventions. While female caregivers might need more time for leisure activities, male caregivers need ways to deal with their emotional relationship with their care receivers. Treatment of their depressive feelings seems to be crucial. They would also need approaches specifically targeting the different stages as dementia develop.

scholarly journals Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel group randomised controlled feasibility study with waiting-list control

2020 ◽  
Author(s):  
Becky Dowson ◽  
Justine Schneider ◽  
Boliang Guo ◽  
Philip M Bath ◽  
Orii McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Waiting List ◽  
Community Group ◽  
People With Dementia ◽  
Parallel Group ◽  
Randomised Controlled ◽  
Person With Dementia

Abstract BackgroundAs the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study.MethodsThe PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline.DiscussionDespite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.Trial RegistrationUnique identification number in ISRCTN registry: ISRCTN10201482https://www.isrctn.com/ISRCTN10201482. Date registered: 12/05/2020

A longitudinal assessment of treatment-related differences in quality of life among prostate cancer patients

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 15605-15605
Author(s):  
A. Giedzinska-Simons ◽  
K. M. Christie ◽  
B. E. Meyerowitz ◽  
M. Gross ◽  
D. B. Agus
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Negative Affect ◽  
Disease Severity ◽  
Longitudinal Design ◽  
Gradual Decline ◽  
Prospective Longitudinal ◽  
The Impact ◽  
Over Time

15605 Background: Physicians increasingly are asked about changes in quality of life (QOL) following treatment. This is especially relevant for prostate cancer (PC), a disease for which different primary treatments expose patients to differing risks of adverse effect with similar expected benefits in terms of survival. Few studies have compared QOL for the major treatment approaches in a prospective, longitudinal design. Methods: 53 PC patients completed mailed questionnaires assessing general, emotional, social, functional, physical, and prostate-specific QOL with the FACT; stress with the Impact of Events Scale-R (IES-R); and mood with the Positive and Negative Affect Schedule. Data were collected prior to treatment and at 1 month and 6 months post-primary disease treatment. Patients’ primary treatments were radical prostatectomy (RP; N=22), radiation (N=16), or conservative therapy (androgen deprivation treatment only (ADT); N=15). Responses were compared in a mixed-factorial ANCOVA design, controlling for disease severity (Gleason score) and age. Results: Although there were no main effect differences by treatment group, treatment by time interactions emerged for physical QOL (p=.002), stress (p=.04), and negative affect (p=.01). Examination of patterns of response indicated that physical difficulties remained fairly consistent for RP and radiation patients over time, whereas ADT patients showed a gradual decline in physical QOL. For stress and negative affect, RP patients reported highest levels of distress prior to treatment and experienced a gradual recovery over time. Radiation patients followed a similar, although less dramatic, trajectory for stress but showed little change in negative affect. ADT patients had relatively low levels of stress at each time point. Their levels of negative affect were similar to those of radiation patients. Conclusions: Even after controlling for age and disease severity, this examination of patient QOL over time suggests the pre-treatment period is especially stressful for RP patients, and that ADT patients exhibit a gradual decline in physical QOL over time. These results may help physicians anticipate and discuss treatment-specific trends in QOL with their patients, thus enhancing patient care. No significant financial relationships to disclose.

scholarly journals Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): Protocol for a Two-Arm, Parallel Group Randomised Controlled Feasibility Study with Waiting-List Control

2020 ◽  
Author(s):  
Becky Dowson ◽  
Justine Schneider ◽  
Boliang Guo ◽  
Philip M Bath ◽  
Orii McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Waiting List ◽  
Community Group ◽  
People With Dementia ◽  
Parallel Group ◽  
Randomised Controlled ◽  
Person With Dementia

Abstract BackgroundAs the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study.MethodsThe PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. DiscussionDespite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.Trial RegistrationUnique identification number in ISRCTN registry: ISRCTN10201482 https://www.isrctn.com/ISRCTN10201482. Date registered: 12/05/2020

scholarly journals Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel group randomised controlled feasibility study with waiting-list control

2020 ◽  
Author(s):  
Becky Dowson ◽  
Justine Schneider ◽  
Boliang Guo ◽  
Philip M Bath ◽  
Orii McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Waiting List ◽  
Community Group ◽  
People With Dementia ◽  
Parallel Group ◽  
Randomised Controlled ◽  
Person With Dementia

Abstract Background As the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study. Methods The PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. Discussion Despite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.

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