scholarly journals Quality of life in young onset dementia: an updated systematic review

2016 ◽  
Vol 38 (1) ◽  
pp. 6-13 ◽  
Author(s):  
Maria Alice Tourinho Baptista ◽  
Raquel Luiza Santos ◽  
Nathália Kimura ◽  
Isabel Barbeito Lacerda ◽  
Aud Johannenssen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Unmet Needs ◽  
Well Being ◽  
Future Perspective ◽  
Young Onset ◽  
Age Related ◽  
Thomson Reuters ◽  
Young Onset Dementia

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

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 Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

2017 ◽  
Vol 30 (3) ◽  
pp. 437-446 ◽  
Author(s):  
J. C. L. van Duinen-van den IJssel ◽  
B. Appelhof ◽  
S. A. Zwijsen ◽  
M. Smalbrugge ◽  
F. R. J. Verhey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychotropic Drug ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Care Program ◽  
Community Dwelling ◽  
Care Needs ◽  
Young Onset ◽  
Young Onset Dementia

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.Methods:The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.Conclusions:The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

Unmet Needs and Health-Related Quality of Life in Young-Onset Dementia

2014 ◽  
Vol 22 (11) ◽  
pp. 1121-1130 ◽  
Author(s):  
Christian Bakker ◽  
Marjolein E. de Vugt ◽  
Deliane van Vliet ◽  
Frans Verhey ◽  
Yolande A. Pijnenburg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Young Onset ◽  
Related Quality ◽  
Health Related ◽  
Young Onset Dementia

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

scholarly journals Monitoring Health Parameters of Elders to Support Independent Living and Improve Their Quality of Life

Sensors ◽  
2021 ◽  
Vol 21 (2) ◽  
pp. 517
Author(s):  
Ilia Adami ◽  
Michalis Foukarakis ◽  
Stavroula Ntoa ◽  
Nikolaos Partarakis ◽  
Nikolaos Stefanakis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Independent Living ◽  
Elderly Population ◽  
Well Being ◽  
The Elderly ◽  
Chronic Illnesses ◽  
Age Related ◽  
Self Sufficiency ◽  
Health And Well Being

Improving the well-being and quality of life of the elderly population is closely related to assisting them to effectively manage age-related conditions such as chronic illnesses and anxiety, and to maintain their independence and self-sufficiency as much as possible. This paper presents the design, architecture and implementation structure of an adaptive system for monitoring the health and well-being of the elderly. The system was designed following best practices of the Human-Centred Design approach involving representative end-users from the early stages.

The Impact of Amyloid PET Disclosure on Quality of Life in Patients With Young Onset Dementia

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Daniël M. van der Doelen ◽  
Ron L.H. Handels ◽  
Marissa D. Zwan ◽  
Sander M.J. van Kuijk ◽  
Wiesje Pelkmans ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyloid Pet ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Impact

Medical technology: A systematic review on medical devices utilized for epilepsy prediction and management

2021 ◽  
Vol 19 ◽  
Author(s):  
Jen Sze Ong ◽  
Shuet Nee Wong ◽  
Alina Arulsamy ◽  
Jessica L. Watterson ◽  
Mohd. Farooq Shaikh
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Medical Devices ◽  
Epileptic Seizures ◽  
Well Being ◽  
Sudden Unexpected Death ◽  
Unexpected Death ◽  
Long Time ◽  
Wearable Medical

: Epilepsy is a devastating neurological disorder that affects nearly 70 million people worldwide. Epilepsy causes uncontrollable, unprovoked and unpredictable seizures that reduces the quality of life of those afflicted, with 1-9 epileptic patient deaths per 1000 patient occurring annually due to sudden unexpected death in epilepsy (SUDEP). Predicting the onset of seizures and managing them may help patients from harming themselves and may improve their well-being. For a long time, electroencephalography (EEG) devices have been the mainstay for seizure detection and monitoring. This systematic review aimed to elucidate and critically evaluate the latest advancements of medical devices, besides EEG, that have been proposed for the management and prediction of epileptic seizures. A literature search was performed on three databases; PubMed, Scopus and EMBASE. Following title/abstract screening by two independent reviewers, 27 articles were selected for critical analysis in this review. These articles revealed ambulatory, non-invasive and wearable medical devices such as the in-ear EEG devices, the accelerometer-based devices and the subcutaneous implanted EEG devices might be more acceptable than traditional EEG systems. In addition, extracerebral signal-based devices may be more efficient than EEG-based systems, especially when combined with an intervention trigger. Although further studies may still be required to improve and validate these proposed systems before commercialization, these findings may give hope to epileptic patients, particularly those with refractory epilepsy, to predict and manage their seizures. The use of medical devices for epilepsy may improve patients' independence and quality of life and possibly prevent sudden unexpected death in epilepsy (SUDEP).

scholarly journals Quality of Life in People with Young-Onset Dementia: A Nordic Two-Year Observational Multicenter Study

2019 ◽  
Vol 67 (1) ◽  
pp. 197-210 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Jūratė Šaltytė Benth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multicenter Study ◽  
Young Onset ◽  
Young Onset Dementia

scholarly journals Gaming Technology to Support Leisure Activities Among Older Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 559-559
Author(s):  
Walter Boot
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Digital Divide ◽  
Daily Living ◽  
Leisure Activities ◽  
Well Being ◽  
Age Related ◽  
Gaming Technology ◽  
Research And Education

Abstract There has been a great deal of research on technology to support older adults in their performance of Activities and Instrumental Activities of Daily Living. There has been substantially less research, however, on exploring technology solutions that support hobbies and leisure. This is unfortunate, as quality of life and well-being are determined by more than just one’s ability to manage everyday tasks. An overview will be presented of research the Center for Research and Education on Aging and Technology Enhancement (CREATE) has conducted over two decades with the goals of understanding and supporting older adults’ performance of technology-based leisure activities. Many of these studies have involved videogaming, where there exists a substantial age-related digital divide. CREATE has evaluated older adults’ attitudes and game experiences through survey and research studies and has even recorded longitudinal gameplay. How these findings can be applied to support technology-based leisure activities will be expanded upon. Part of a symposium sponsored by Technology and Aging Interest Group.

scholarly journals Parent emigration and physical health of children left behind: systematic review of the literature

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
J Racaite ◽  
G Surkiene ◽  
M Jakubauskiene ◽  
R Sketerskiene ◽  
L Wulkau
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Physical Health ◽  
Well Being ◽  
Overweight And Obesity ◽  
Unhealthy Lifestyle ◽  
Poor Growth ◽  
Left Behind ◽  
Children Left Behind

Abstract Background Children left behind (CLB) are those, who have been left behind at their original residence while one or both parents migrate to other places for work. The aim of this study was to systematically review studies where the physical health consequences for CLB were analysed. Methods We searched the Web of Science, PubMed, Academic Search Complete, PsycINFO and Cochrane databases. We included studies reporting physical health outcomes of children affected by parent migration. Results We selected 35 studies from a total of 2191. The results reveal that, overall, the absence of one or both parents is related to poorer child health - the nutrition of CLB is not healthy or balanced and is insufficient, leading to higher rates of anaemia and poor growth indicators of affected children. Boys left by parents are smaller than boys who were never left behind. CLB face lower underweight or stunted growth risks due to the additional income from remittances which ensures sufficient food for the household, this can also lead, however, to overweight and obesity. Unhealthy lifestyle behaviours such as smoking, alcohol, food preferences, lower physical activity and higher risk of injuries were more prevalent among CLB. CLB were more likely not to have completed the recommended vaccination programme than those living with their parents. Opinions vary on how emigration of parents affects children’s well-being and quality of life. CLB had higher probabilities of higher well-being than children living in non-migrant households. However, health-related quality of life (HRQoL) of CLB scored significantly lower than HRQoL of non-left-behind children. Conclusions The migration of parents has negative impacts on the child’s physical health, however it can also have positive impacts on children’s well-being when basic needs for sufficient nutrition are not satisfied in the home countries. Public health interventions should be taken to ensure the health of the CLB population. Key messages This is the first systematic review on the physical health of CLB. The well-being of CLB is poorer and they are at risk of health problems, such as insufficient and/or unbalanced diet, unhealthy behaviours and incomplete vaccination status.

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