المؤلفون: Aiza Amor Padre-e Abayon, Millicent Raymonds, Priya Brahmbhatt, Shelina Samnani, Fahad Hanna

المصدر: Psych, Vol 6, Iss 1, Pp 260-272 (2024)

مصطلحات موضوعية: dementia carers, burden, wellbeing, quality of life, scoping review, Psychology, BF1-990

الوصف: The need for informal caregiving has become a crucial topic for researchers and policymakers. This review explores the psychosocial impact on caregivers providing dementia care in high-income and low–middle-income Asian countries. A scoping review was undertaken following the Joanna Briggs Institute (JBI) protocol. A systematic search of four databases (PubMed, ProQuest, Medline, and Medline Complete) was conducted. Articles were screened following the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines. Fourteen articles (11 cross-sectional, 1 longitudinal, 1 case-control, and 1 descriptive phenomenological study) were selected for the final analysis. The most frequently reported findings from low–middle-income countries were dementia caregivers working longer hours and experiencing financial issues, poor physical health, and lower life satisfaction, which progressively and collectively affected caregivers’ psychosocial well-being and quality of life. However, the impact was less significant in high-income Asian countries, particularly those where efforts are being made to identify the burdens associated with caring for people with dementia and providing appropriate support. This review demonstrates clear evidence that caring for people with dementia may affect informal caregivers’ quality of life, particularly in low–middle-income Asian countries. Systematic reviews and meta-analyses may be needed to confirm these findings.

وصف الملف: electronic resource

العلاقة: https://www.mdpi.com/2624-8611/6/1/16Test; https://doaj.org/toc/2624-8611Test

الوصول الحر: https://doaj.org/article/efa68c61b32d4ec1a45cd2f0e6ae3758Test

المؤلفون: Victor, C.R., Gamble, L.D., Pentecost, C., Quinn, Catherine, Charlwood, C., Matthews, F.E., Clare, L.

مصطلحات موضوعية: Carers, Dementia, Minority ethnic population, Quality of life

الوصف: Yes
The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of 'living well' among people with dementia and carers from ethnic minority groups with matched white peers. We used an exploratory cross-sectional case-control design to compare 'living well' for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (-4.74, 95% CI: -7.98 to -1.50) and higher loneliness (1.72, 95% CI: 0.78-2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72-14.63) and role captivity (2.00, 95% CI: 0.43-3.57) and lower relationship quality (-9.86, 95% CI: -14.24 to -5.48) than their white peers. Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages.
Economic and Social Research Council. National Institute for Health and Care Research. Grant Number: ES/L001853/2

الإتاحة: http://hdl.handle.net/10454/19785Test

المؤلفون: Read, Sanna, Hicks, Ben, Budden, Emily, Douglass, Jacob, Grahamslaw, Amanda, Herrero, Elena, Joseph, Gregory, Kirkup, Christine, Pusey, Martha, Russell, Alice, Sondh, Harsharon, Sondh, Sharon, Storey, Bryony, Towson, Georgia, Baxter, Kate, Birks, Yvonne, Brayne, Carol, Colclough, Carmen, Dangoor, Margaret, Dixon, Josie, Donaghy, Paul, Gridley, Kate, Harris, Peter R, Hu, Bo, King, Derek, Knapp, Martin, Miles, Eleanor, Mueller, Christoph, Perach, Rotem, Robinson, Louise, Rusted, Jennifer, Thomas, Alan J, Wittenberg, Raphael, Banerjee, Sube

مصطلحات موضوعية: COVID-19, carers, cohort, dementia, older people, quality of life, Humans, Caregivers, Pandemics, Cohort Studies, Communicable Disease Control

الوصف: INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

وصف الملف: application/pdf

العلاقة: https://www.repository.cam.ac.uk/handle/1810/368177Test

الإتاحة: https://www.repository.cam.ac.uk/handle/1810/368177Test

المؤلفون: Sanna Read, Ben Hicks, Emily Budden, Jacob Douglass, Amanda Grahamslaw, Elena Herrero, Gregory Joseph, Christine Kirkup, Alice Russell, Harsharon Sondh, Sube Banerjee, Eleanor Miles, Rotem Perach, Jennifer Rusted

مصطلحات موضوعية: Clinical sciences, Health sciences, Health services and systems, Psychology, Applied and developmental psychology, dementia, cohort, quality of life, carers, care, longitudinal, 1103 Clinical Sciences, 1117 Public Health and Health Services, 1701 Psychology, Geriatrics, 3202 Clinical sciences, 4203 Health services and systems, 5201 Applied and developmental psychology

الوصف: Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

العلاقة: 10779/uos.24290575.v1; https://figshare.com/articles/journal_contribution/Long-term_impact_of_the_COVID-19_pandemic_on_the_quality_of_life_of_people_with_dementia_and_their_family_carers/24290575Test

الإتاحة: https://figshare.com/articles/journal_contribution/Long-term_impact_of_the_COVID-19_pandemic_on_the_quality_of_life_of_people_with_dementia_and_their_family_carers/24290575Test

المؤلفون: Rosie Bamber, Theocharis Stavroulakis, Jill Carlton, Christopher McDermott

مصطلحات موضوعية: Neurology and neuromuscular diseases, Occupational therapy, Social determinants of health, Health psychology, Scoping Review, Motor Neuron Disease, Amyotrophic Lateral Sclerosis, Health-related Quality of Life, Quality of Life, Informal Carers, Caregivers, Humans

الوصف: The current scoping review aims to collate all studies that investigate the health-related quality of life of informal carers of people diagnosed with motor neuron disease. Three different databases will be searched from inception using a combination of keywords related to health-related quality of life (HRQoL), motor neuron disease (MND) and informal carers. No restrictions will be applied to the publication date of included articles. Data will be extracted according to Joanna Briggs Institute guidance. Synthesis of quantitative data will be performed through basic descriptive analysis. Qualitative data synthesis will also be descriptive, as per the remit of a scoping review. Thematic analysis via coding and categorisation of qualitative data will be considered depending on the volume of data collected.

العلاقة: https://figshare.com/articles/workflow/Protocol_for_a_scoping_review_of_an_exploration_of_factors_influencing_the_health-related_quality_of_life_of_informal_carers_in_motor_neuron_disease/25523938Test

الإتاحة: https://doi.org/10.15131/shef.data.25523938.v1Test
https://figshare.com/articles/workflow/Protocol_for_a_scoping_review_of_an_exploration_of_factors_influencing_the_health-related_quality_of_life_of_informal_carers_in_motor_neuron_disease/25523938Test

المؤلفون: Victor, Christina R., Gamble, Laura D., Pentecost, Claire, Quinn, Catherine, Charlwood, Catherine, Matthews, Fiona E., Clare, Linda

مصطلحات موضوعية: Carers, Dementia, Minority ethnic population, Quality of life

الوصف: Objectives: The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of ‘living well’ among people with dementia and carers from ethnic minority groups with matched white peers. Methods: We used an exploratory cross-sectional case-control design to compare ‘living well’ for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. Results: The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (−4.74, 95% CI: −7.98 to −1.50) and higher loneliness (1.72, 95% CI: 0.78–2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72–14.63) and role captivity (2.00, 95% CI: 0.43–3.57) and lower relationship quality (−9.86, 95% CI: −14.24 to −5.48) than their white peers. Conclusion: Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages.

العلاقة: https://hull-repository.worktribe.com/output/4529363Test; International Journal of Geriatric Psychiatry; Volume 39; Issue 1; https://hull-repository.worktribe.com/file/4529363/1/Published%20articleTest

الإتاحة: https://doi.org/10.1002/gps.6048Test
https://hull-repository.worktribe.com/file/4529363/1/Published%20articleTest
https://hull-repository.worktribe.com/output/4529363Test

المؤلفون: Cheong, Julia LY, Goh, Zhao HK, Schrag, Anette

المصدر: Parkinsonism and Related Disorders , 120 , Article 106019. (2024)

مصطلحات موضوعية: Multiple system atrophy, Caregiver experience, Quality of life, Caregiving, Carers, Support needs

الوصف: Background: Multiple system atrophy (MSA) is a neurodegenerative disease with presentations including parkinsonism, autonomic disturbances, gait impairment and mood disorders. The progressive nature of MSA results in a significant deterioration in quality of life for patients. // Objectives: To investigate the needs of people with MSA (PwMSA) in the United Kingdom (UK) and the support provided to them. // Methods: A survey of members of the UK's MSA Trust including PwMSA and former carers explored questions on the physical, emotional, personal and financial impact of MSA and on support received. // Results: There were 284 valid responses from PwMSA and 371 responses from former carers. Difficulties with movement were universally experienced by PwMSA. The majority of former carers reported these as difficult or very difficult to manage (90 %), followed by autonomic problems (85 %) and breathing, speech or swallowing problems (81 %). PwMSA also reported fatigue (96 %), mood disorders (80 %) and social isolation (82 %). 41 % of former carers felt that the emotional needs of PwMSA had not been met. Many also reported inadequately covered financial needs (48 %). Equipment used most commonly included mobility equipment (90 %). The majority received support from neurologists (95 %) and GPs (92 %), but few from palliative care or mental health professionals. Satisfaction was highest for support from palliative services (95 %) and specialist nurses (91 %). // Conclusion: This survey demonstrates the high burden of MSA across various aspects of life for PwMSA. It suggests that whilst there is good provision of neurology services and physical equipment, there is a need to improve support for their emotional and social needs.

وصف الملف: text

العلاقة: https://discovery.ucl.ac.uk/id/eprint/10187293/1/Support%20needs%20of%20people%20with%20MSA.pdfTest; https://discovery.ucl.ac.uk/id/eprint/10187293Test/

الإتاحة: https://discovery.ucl.ac.uk/id/eprint/10187293/1/Support%20needs%20of%20people%20with%20MSA.pdfTest
https://discovery.ucl.ac.uk/id/eprint/10187293Test/

المؤلفون: Knapp, Martin, Lorenz-Dant, Klara, Walbaum, Magdalena, Comas-Herrera, Adelina, Cyhlarova, Eva, Livingston, Gill, Wittenberg, Raphael

المصدر: International Journal of Geriatric Psychiatry , 39 (2) , Article e6059. (2024)

مصطلحات موضوعية: carers, coping therapy, cost, dementia, economic evaluation, scaling-up, Humans, Caregivers, Cost-Benefit Analysis, England, Evidence-Based Medicine, Quality of Life

الوصف: OBJECTIVES: The STrAtegies for RelaTives (START) intervention is effective and cost-effective in supporting family carers of people with dementia. It is currently not available to all eligible carers in England. What would be the impacts on service costs and carer health-related quality of life if START was provided to all eligible carers in England, currently and in future? METHODS: Effectiveness and cost-effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health-related quality of life outcomes between 2015 (base year for projections) and 2040. RESULTS: Scaling-up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6 years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality-adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883. CONCLUSIONS: Scaling-up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence-based interventions that help them to maintain this role, such as START, should be available across the country.

وصف الملف: application/pdf

العلاقة: https://discovery.ucl.ac.uk/id/eprint/10186841/1/Scaling%20up%20an%20evidence%20based%20intervention%20for%20family%20carers%20of%20people.pdfTest; https://discovery.ucl.ac.uk/id/eprint/10186841Test/

الإتاحة: https://discovery.ucl.ac.uk/id/eprint/10186841/1/Scaling%20up%20an%20evidence%20based%20intervention%20for%20family%20carers%20of%20people.pdfTest
https://discovery.ucl.ac.uk/id/eprint/10186841Test/

المؤلفون: Barbora Silarova, Stacey Rand, Ann-Marie Towers, Karen Jones

المصدر: Health and Quality of Life Outcomes, Vol 21, Iss 1, Pp 1-23 (2023)

مصطلحات موضوعية: Carers, Dementia, Outcome Assessment, Proxy, Psychometrics, Quality of life, Computer applications to medicine. Medical informatics, R858-859.7

الوصف: Abstract Background People with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective (‘My opinion: What I think’) and proxy-person perspective (‘What I think the person I represent thinks’). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy. Methods Cross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo’s ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis. Results We analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only. Conclusions This was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1477-7525Test

الوصول الحر: https://doaj.org/article/fdb1fee17e544e3ab19bc29ba521013eTest

المؤلفون: Stacey Rand, Grace Collins, Wenjing Zhang, Alisoun Milne, Barbora Silarova

المصدر: Journal of Long-Term Care (2023)

مصطلحات موضوعية: social care, long-term care, quality of life, outcomes, assessment, carers, Medicine, Social Sciences

الوصف: Context: Social care outcomes (the effect of services on the quality of life of people with support needs and unpaid carers) have been proposed as a way of improving the quality and effectiveness of care. Outcomes have also been proposed as a way of reconceptualising ‘needs’ that have applications in needs assessment, care planning, evaluation and care practice. Objectives: The study aimed to provide insights into social care professionals’ experiences and views on the collection and application of outcomes data in practice and what they believe are the benefits, challenges and barriers to implementation. Methods: Interviews were conducted with 25 social care professionals in England and analysed using a framework approach. Findings: Participants reported perceived benefits of using outcomes data, especially to focus effort on improving the well-being of people with support needs and carers. Perceived challenges include requirements for data collection set by funders/commissioners, the volume of data collected, difficulties in separating non-service-related influences on outcomes and the format of collection. Participants felt a more flexible approach might facilitate more meaningful conversations, rather than a ‘tick-box’ exercise. Limitations: The study sample was purposive, based on established connections. It only included professionals from London and South East and Central England. Implications: Although outcomes are perceived as important in helping to improve people’s lives, social care professionals identified a number of challenges. Further research to understand and address these challenges is needed.

وصف الملف: electronic resource

العلاقة: https://account.journal.ilpnetwork.org/index.php/lse-j-jltc/article/view/169Test; https://doaj.org/toc/2516-9122Test

الوصول الحر: https://doaj.org/article/c2aa10098b2e448380583f246903c6e9Test