Measuring younger onset dementia: A comprehensive literature search of the quantitative psychosocial research

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 135-156 ◽  
Author(s):  
JH Spreadbury ◽  
CM Kipps
Keyword(s):  
Literature Search ◽  
Well Being ◽  
Controlled Vocabulary ◽  
Cochrane Library ◽  
Future Research ◽  
Free Text ◽  
Methodological Issues ◽  
Young Onset ◽  
Young Onset Dementia ◽  
Comprehensive Literature Search

Background Research is beginning to demonstrate the unique psychosocial effects of young onset dementia. Theorising remains at an early stage and there has been little discussion about measurement and methodological issues. Our aim was to conduct a comprehensive literature search of the young onset dementia psychosocial research, and to identify the domains of experience measured with patients and caregivers. Method We conducted a search of five electronic databases (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) using equivalent database controlled vocabulary terms. We supplemented this search by using free text searches within electronic databases, searching reference sections of salient papers, and using online search engines. We defined psychosocial as referring to patient and caregiver psychological, behavioural, and social functioning in the context of living with young onset dementia. Results We identified 72 published articles, 49 quantitative and 23 qualitative. The quantitative articles form the focus of the present review. We identified 10 domains of patient experience measured and 14 domains of caregiver experience. The patient domains measured most often were behaviour, cognition, functioning, and severity, and reflected a focus on symptoms and clinical features. Quality of Life (QoL) was the patient domain measured least often. The caregiver domains measured most often were mental health and burden, and reflected a focus on psychological well-being and coping. Conclusion The scope of measurement is broader in caregivers than patients. QoL although under-researched may be a useful domain to measure in future research. Risk factors, measurement and methodological issues are discussed.

scholarly journals Predeath Grief, Resourcefulness, and Perceived Stress Among Caregivers of Partners With Young-Onset Dementia

2018 ◽  
Vol 41 (7) ◽  
pp. 973-989 ◽  
Author(s):  
Karie Ruekert Kobiske ◽  
Abir K. Bekhet ◽  
Mauricio Garnier-Villarreal ◽  
Marilyn Frenn
Keyword(s):  
Perceived Stress ◽  
Online Survey ◽  
Theoretical Framework ◽  
Future Research ◽  
Resilience Theory ◽  
Moderating Effects ◽  
Cross Sectional ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Relationship

More than 200,000 Americans are currently diagnosed with young-onset dementia (YOD). YOD is dementia diagnosed prior to the age of 65. Most persons of YOD are cared for by their partners. Using the theoretical framework of Resilience Theory, this cross-sectional, correlational study examined the moderating effects of personal and social resourcefulness on the relationship between predeath grief and perceived stress among 104 YOD caregiving partners (life partners/spouses) using an online survey platform. Results indicated a large positive correlation between predeath grief and caregiver perceived stress ( r = .65; p < .001). Together predeath grief, personal resourcefulness and social resourcefulness explained 51.5% of the variance in perceived stress. Personal resourcefulness did not moderate the relationship. Social resourcefulness did positively moderate this relationship between predeath grief and perceived stress. These findings allow for a better understanding of the caregiving experience for a partner with YOD and creates opportunities for future research studies.

scholarly journals Role of social support in tobacco cessation

2017 ◽  
Vol 4 (11) ◽  
pp. 3942 ◽  
Author(s):  
Shruthi P. S. ◽  
Niveditha B. S. ◽  
Punith Shetty ◽  
Krishna Chaitanya ◽  
Naveen Khargekar
Keyword(s):  
Social Support ◽  
Behaviour Change ◽  
Relapse Prevention ◽  
Tobacco Cessation ◽  
Literature Search ◽  
Well Being ◽  
Psychological Well Being ◽  
Tobacco Intervention ◽  
Comprehensive Literature Search

Most tobacco intervention focus on behavioural methods to reduce dependence, the role of social support is unclear. The objective is to evaluate the evidence of social support as well as its efficacy with respect to tobacco cessation. It explores to understand the role of social support for an individual to make a behaviour change. Social support is one resource in the environment, if used effectively can be extremely beneficial for someone wanting to quit tobacco. A comprehensive literature search on the contribution of social support with respect to tobacco cessation was conducted to give a practical review for practitioners in the field. Overall, it was seen that all the studies strengthened the evidence for the role of social support in tobacco cessation. Although, more research is required in this field to comprehend the long haul advantages of social support and additionally its effects on psychological well-being as well as relapse prevention. 

scholarly journals An Integrative Literature Review on the Nomenclature and Definition of Dementia at a Young Age

2021 ◽  
pp. 1-26
Author(s):  
Dennis van de Veen ◽  
Christian Bakker ◽  
Kirsten Peetoom ◽  
Yolande Pijnenburg ◽  
Janne M. Papma ◽  
...  
Keyword(s):  
Symptom Onset ◽  
Operational Definition ◽  
Young Age ◽  
Future Research ◽  
International Consensus ◽  
Young Onset ◽  
Age Related ◽  
Young Onset Dementia ◽  
Age Limits ◽  
Definition Of

Background: There has been growing interest in young people living with dementia. Future research requires consensus on the terminology and operational definition of this group. Objective: The purpose of this integrative review was to explore and include all operational definitions used to define dementia at a young age. Methods: On August 14, 2020, the PubMed, Embase, Cinahl, and PsycInfo databases were searched for empirical and theoretical literature using Google. Various terms to describe and define ‘dementia’ and ‘at a young age’ were used to collect literature concerning terminology; age-related aspects, including cut-off ages and criteria; and etiologies of dementia at a young age. Results: The search yielded 6,891 empirical and 4,660 theoretical publications, resulting in the inclusion of 89 publications, including 36 publications containing an explicit discussion and 53 publications as confirmation. ‘Young-onset dementia’ was the most commonly used term of seven identified terms, in the last two decades. The age of 65 years at symptom onset was used most frequently when considering a total of six upper age limits and four criteria to define a cut-off age. Eight lower age limits and an option for subdivision based on age were included. We identified 251 different etiologies and 27 categories of etiologies. Conclusion: Despite relative consensus on the term young-onset dementia and an age at symptom onset being used as a cut-off criterion, much is still unclear concerning possible etiologies of dementia at a young age. In the current study, controversies were detected for discussion in an international consensus study.

Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 878-893 ◽  
Author(s):  
Kirsten Thorsen ◽  
Marcia Cristina Nascimento Dourado ◽  
Aud Johannessen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Single Individual ◽  
Longitudinal Case Study ◽  
Young Onset ◽  
People With Dementia ◽  
Treatment Support ◽  
Young Onset Dementia

BackgroundCognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges.AimTo examine the experience of the quality of life with YOD as a single person.MethodThe study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.FindingsWe examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.ConclusionThe study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

scholarly journals A systematic meta-review of self-management support for people with dementia

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 253-269
Author(s):  
Judith G Huis in het Veld ◽  
Renate Verkaik ◽  
Berno van Meijel ◽  
Anneke L Francke
Keyword(s):  
Systematic Reviews ◽  
Well Being ◽  
Self Management ◽  
Cochrane Library ◽  
Future Research ◽  
Management Support ◽  
People With Dementia ◽  
Literature Searches ◽  
Meta Review ◽  
The Cochrane Library

Self-management support for people with dementia is important to help them and their family caregivers to cope with challenges in daily live. Insight into the effects of self-management support interventions on people with dementia is however lacking, despite existing relevant systematic reviews. We therefore conducted a meta-review of relevant systematic reviews, following the PRISMA statement. Systematic literature searches were conducted in PubMed, CINAHL, the Cochrane Library, Embase and PsycINFO. The searches were done in December 2015, and all relevant references until then were taken into consideration. No conclusions about the effects of self-management support interventions on people with dementia could be drawn. Recommendations for future research and practice include that self-management support interventions and effect measurements should be wider in scope than psychological well-being.

scholarly journals Electromechanical and Robotic Devices for Gait and Balance Rehabilitation of Children with Neurological Disability: A Systematic Review

2021 ◽  
Vol 11 (24) ◽  
pp. 12061
Author(s):  
Nicola Valè ◽  
Marialuisa Gandolfi ◽  
Laura Vignoli ◽  
Anita Botticelli ◽  
Federico Posteraro ◽  
...  
Keyword(s):  
Systematic Review ◽  
Literature Search ◽  
Cochrane Library ◽  
Future Research ◽  
Limited Attention ◽  
Rehabilitation Protocols ◽  
Primary Literature ◽  
Robotic Devices ◽  
Balance Rehabilitation ◽  
Neurological Disabilities

In the last two decades, a growing interest has been focused on gait and balance robot-assisted rehabilitation in children with neurological disabilities. Robotic devices allow the implementation of intensive, task-specific training fostering functional recovery and neuroplasticity phenomena. However, limited attention has been paid to the protocols used in this research framework. This systematic review aims to provide an overview of the existing literature on robotic systems for the rehabilitation of gait and balance in children with neurological disabilities and their rehabilitation applications. The literature search was carried out independently and synchronously by three authors on the following databases: MEDLINE, Cochrane Library, PeDro, Institute of Electrical and Electronics Engineers, ScienceDirect, and Google Scholar. The data collected included three subsections referring to clinical, technical, and regulatory aspects. Thirty-one articles out of 81 found on the primary literature search were included in the systematic review. Most studies involved children with cerebral palsy. Only one-third of the studies were randomized controlled trials. Overall, 17 devices (nine end-effector systems and eight exoskeletons) were investigated, among which only 4 (24%) were bore the CE mark. Studies differ on rehabilitation protocols duration, intensity, and outcome measures. Future research should improve both rehabilitation protocols’ and devices’ descriptions.

scholarly journals A scoping review of the Clinical Frailty Scale

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Church ◽  
Emily Rogers ◽  
Kenneth Rockwood ◽  
Olga Theou
Keyword(s):  
Scoping Review ◽  
Literature Search ◽  
Research Evidence ◽  
Web Of Science ◽  
Cochrane Library ◽  
Publication Date ◽  
Clinical Frailty Scale ◽  
And Function ◽  
Comprehensive Literature Search ◽  
Frailty Score

Abstract Background Frailty is increasingly recognized as an important construct which has health implications for older adults. The Clinical Frailty Scale (CFS) is a judgement-based frailty tool that evaluates specific domains including comorbidity, function, and cognition to generate a frailty score ranging from 1 (very fit) to 9 (terminally ill). The aim of this scoping review is to identify and document the nature and extent of research evidence related to the CFS. Methods We performed a comprehensive literature search to identify original studies that used the Clinical Frailty Scale. Medline OVID, Scopus, Web of Science, CINAHL, PsycINFO, Cochrane Library and Embase were searched from January 2005 to March 2017. Articles were screened by two independent reviewers. Data extracted included publication date, setting, demographics, purpose of CFS assessment, and outcomes associated with CFS score. Results Our search yielded 1688 articles of which 183 studies were included. Overall, 62% of studies were conducted after 2015 and 63% of the studies measured the CFS in hospitalized patients. The association of the CFS with an outcome was examined 526 times; CFS was predictive in 74% of the cases. Mortality was the most common outcome examined with CFS being predictive 87% of the time. CFS was associated with comorbidity 73% of the time, complications 100%, length of stay 75%, falls 71%, cognition 94%, and function 91%. The CFS was associated with other frailty scores 94% of the time. Conclusions This scoping review revealed that the CFS has been widely used in multiple settings. The association of CFS score with clinical outcomes highlights its utility in the care of the aging population.

Outcomes of allogeneic hematopoietic cell transplantation in patients with myelofibrosis: A systematic review and meta-analysis.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 7045-7045
Author(s):  
Jan Philipp Bewersdorf ◽  
Amar Sheth ◽  
Shaurey Vetsa ◽  
Alyssa Grimshaw ◽  
Smith Giri ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trials ◽  
Meta Analysis ◽  
Controlled Vocabulary ◽  
Hematopoietic Cell ◽  
Cochrane Library ◽  
Free Text ◽  
Cell Transplant ◽  
Efficacy And Safety ◽  
Significant Difference

7045 Background: Allogeneic hematopoietic cell transplant (allo-HCT) remains the only potentially curative therapeutic modality for patients with primary or secondary myelofibrosis (MF). However, many patients (pts) are ineligible for allo-HCT and transplant-related mortality can be substantial. Data on the efficacy and safety of allo-HCT are mixed and largely derived from retrospective studies. Methods: To synthesize the available evidence, we conducted a systematic review and meta-analysis searching Cochrane Library, Google Scholar, Ovid Medline, Ovid Embase, PubMed, Scopus, and Web of Science Core Collection from inception to October 11, 2020 for studies on allo-HCT in MF. Databases were searched using a combination of controlled vocabulary and free text terms for relevant studies on the efficacy and safety of allo-HCT in pts with primary and secondary MF. This study protocol has been registered on PROSPERO (CRD42020188706). Random-effects models were used to pool response rates for the co-primary outcomes of 1-year, 2-year and 5-year overall survival (OS). Results: We identified 4247 studies after duplicate removal. 393 studies were assessed as full-texts for eligibility and 43 studies (38 retrospective, 1 prospective study, 4 phase II clinical trials) with 8739 pts were included in this meta-analysis. Study quality was limited by the absence of randomized clinical trials and retrospective design of most studies. Rates of 1-year, 2-year, and 5-year OS were 66.7% (95% confidence interval: 63.5-69.8%), 64.4% (57.6-70.6%), and 55.0% (51.8-58.3%), respectively. Rates of 1-year, 2-year, and 5-year non-relapse mortality were 25.9% (23.3-28.7%), 29.7% (24.5-35.4%), and 30.5% (25.9-35.5%), respectively. Among evaluable studies, rates of 1-year, 2-year, and 5-year relapse-free survival were 65.3% (56.5-73.1%), 56.2% (41.6-69.8%), and 53.6% (39.9-66.9%), respectively. Adverse events related to all-HCT were manageable with rates of acute and chronic graft-versus-host disease in 44.0% (39.6-48.4%; grade III/IV: 15.2%) and 46.5% of patients (42.2-50.8%; extensive or moderate/severe: 26.1%), respectively. Subgroup analyses did not show any significant difference between conditioning regimen intensity (myeloablative vs reduced-intensity), median patient age, and proportion of DIPSS-intermediate-2/high pts. Conclusions: Given the poor prognosis of patients not receiving transplant and in the absence of curative non-transplant therapies, our results support consideration of allo-HCT for eligible pts with MF. However, additional studies in pre- and post-allo-HCT setting are necessary to enhance patient selection (e.g. by incorporation of molecular markers), to optimize transplant strategies (e.g. peri-transplant ruxolitinib, conditioning regimens, and donor selection), symptom management and decrease non-relapse mortality.

The impact of young onset dementia on the family: a literature review

2010 ◽  
Vol 23 (3) ◽  
pp. 356-371 ◽  
Author(s):  
Emma Svanberg ◽  
Aimee Spector ◽  
Joshua Stott
Keyword(s):  
Literature Review ◽  
Literature Search ◽  
Service Development ◽  
Systematic Literature Search ◽  
Young Onset ◽  
People With Dementia ◽  
The Family ◽  
Young Onset Dementia ◽  
The Individual ◽  
The Impact

ABSTRACTBackground: The needs of younger people with dementia have become increasingly recognized in service development. However, little is known about the impact of a diagnosis of young onset dementia on people aged under 65 years and their families. This paper reviews the literature on the experiences of younger people with dementia and their families in the U.K., and outcomes for carers.Methods: Twenty-six studies, encompassing a variety of themes concerning this population, were reviewed following a systematic literature search.Results: Results are divided into the impact on the individual and the impact on the family, specifically carer outcomes and the impact on children.Conclusions: The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

scholarly journals Barriers and facilitators of diabetes management by continuous glucose monitoring systems among adults with type 2 diabetes: a protocol of qualitative systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. e046050
Author(s):  
Mingyue Zheng ◽  
Anamica Patel ◽  
Adeel Khoja ◽  
Yunting Luo ◽  
Wei Lin ◽  
...  
Keyword(s):  
Systematic Review ◽  
Type 2 Diabetes ◽  
Diabetes Management ◽  
Qualitative Studies ◽  
Controlled Vocabulary ◽  
Barriers And Facilitators ◽  
Cochrane Library ◽  
Free Text ◽  
Skin Reactions

IntroductionStudies suggest that continuous glucose monitors (CGMs) play an important role in the management of diabetes. Although general acceptance has been reported by patients with type 2 diabetes towards the use of CGMs, potential barriers exist like pain due to sensor insertion, accidental removal of the device or adhesive strip, impacts of daily activities, skin reactions to sensor adhesive, etc. This systematic review of qualitative studies aims to explore the perspectives, experiences and narratives of patients and caregivers about CGM use, and its barriers and facilitators.Methods and analysisThis review will include qualitative studies and cross-sectional and longitudinal cohort studies using open-ended questions, published in English by 30 October 2021. The following electronic databases will be searched: Cochrane Library, PubMed, EMBASE, CINAHL, PsycINFO and Scopus. A search of grey literature will be conducted via an online search of Google Scholar, WorldCat, ClinicalTrials.gov and OpenGrey A combined search strategy using medical subject headings (MeSH), controlled vocabulary and ‘free-text’ terms will be appropriately revised to suit each database. Primary outcomes will include patient and caregiver perspectives on diabetes management regarding glucose control; living with CGM (quality of life, experience of wearing a CGM); psychological aspects (anxiety, depression, emotional burden); barriers (technical issues, financial issues) to use of CGM and thoughts (interpretation, understanding) on the CGM report. A qualitative meta-synthesis will be conducted employing a systematic literature search of existing literature, quality assessment using study-specific tools and an aggregative thematic synthesis by a multidisciplinary team.Ethics and disseminationEthical approval is not required since this is a systematic review. The results will help improve clinical implementation of CGMs on part of both patients and caregivers.PROSPERO registration numberCRD42020152211.

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