scholarly journals Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

2017 ◽  
Vol 22 (7) ◽  
pp. 897-902 ◽  
Author(s):  
Liselot Kerpershoek ◽  
Marjolein de Vugt ◽  
Claire Wolfs ◽  
Bob Woods ◽  
Hannah Jelley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Informal Care ◽  
Family Carers ◽  
Middle Stage

scholarly journals Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0241982
Author(s):  
Kristin Häikiö ◽  
Denise Cloutier ◽  
Jorun Rugkåsa
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Older People ◽  
Informal Care ◽  
Linear Regression Analysis ◽  
Bivariate Analysis ◽  
Family Carers ◽  
Independent Variables ◽  
Carer Burden

Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2020 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Cabreras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in AustraliaMethods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25).Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher.Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals Relationships between Pathological Patterns and Quality of Life: Pathway Analysis

2013 ◽  
Vol 2013 ◽  
pp. 1-9 ◽  
Author(s):  
Shin-Woong Cho ◽  
Young-Jae Park ◽  
Sang-Chul Lee ◽  
Jaemin Ryu ◽  
Young-Bae Park ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pathway Analysis ◽  
Early Stage ◽  
General Health Questionnaire ◽  
Blood Stasis ◽  
Health Questionnaire ◽  
Pathway Model ◽  
Middle Stage ◽  
Yin Deficiency

Purpose.The purpose of our study was to examine the relationships between pathological patterns and self-rated quality of life (QoL).Methods.A total of 426 Korean subjects participated in this study (male : female = 154 : 272). The subjects were asked to complete Yin Deficiency (YD), Qi Deficiency (QD), Food Stagnation (FS), Blood Stasis (BS), Phlegm, and Seven Emotions Impairment (SEI) pattern Questionnaires and the General Health Questionnaire (GHQ). We formed a pathway model consisting of pathological patterns and QoL questionnaire scores and examined which pathological patterns resulted in decreased QoL using path analysis.Results.Our pathway model had satisfactory fitness levels (GFI = 0.975, NFI = 0.984, and CFI = 0.984) and showed that Phlegm and SEI patterns directly resulted in decreased QoL, whereas QD, YD, FD, and BS indirectly resulted in decreased QoL. The pathway model suggested that the severity or stage of decreased QoL may be estimated by pathological patterns: QD and YD patterns are associated with the early stage; FS and BS patterns are associated with the middle stage; Phlegm and SEI are associated with the later stage of decreased QoL.Conclusion.Our results suggest that pathological patterns directly or indirectly affect decreases in QoL.

Dementia Quality of Life Scale for Older Family Carers

2018 ◽  
Author(s):  
Deborah C. Oliveira ◽  
Catherine Vass ◽  
Aimee Aubeeluck
Keyword(s):  
Quality Of Life ◽  
Family Carers ◽  
Quality Of Life Scale ◽  
Life Scale

scholarly journals The Development of a Quality of Life Scale for Informal Carers for Older Adults

2020 ◽  
Vol 6 ◽  
pp. 233372142092042
Author(s):  
John Maltby ◽  
Eef Hogervorst ◽  
Blossom Stephan ◽  
Xu Sun ◽  
Pinyan Tang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Informal Care ◽  
Personal Growth ◽  
Life Questionnaire ◽  
Confirmatory Factor Analyses ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Informal Carers

Background: The aim of the study was to develop a multidimensional quality of life instrument suitable for use among individuals across cultures who have an informal care role for older persons. Methods: Participants were informal carers of older adults in the United Kingdom ( n = 308), United States ( n = 164), and China ( n = 131). We carried out exploratory and confirmatory factor analyses of 61 items derived from the eight-factor Adult Carers Quality of Life Questionnaire with newly added items to define both traditional and nontraditional informal care roles. Results: Findings suggest a 24-item quality of life scale with a six-factor structure to caring for older adults that assesses (a) exhaustion, (b) adoption of a traditional carer role, (c) personal growth, (d) management and performance, (e) level of support, and (f) financial matters. Conclusion: We present a new scale to assess the multidimensional aspects of quality of life among those caring for older adults.

Quality of life in dementia patients: nursing home versus home care

2011 ◽  
Vol 23 (10) ◽  
pp. 1692-1700 ◽  
Author(s):  
Azlina Wati Nikmat ◽  
Graeme Hawthorne ◽  
S. Hassan Al-Mashoor
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Informal Care ◽  
Population Aging ◽  
Depression Scale ◽  
Short Version ◽  
Care Needs ◽  
Dementia Patients ◽  
Early Dementia

ABSTRACTBackground: Care management providing a high quality of life (QoL) is a crucial issue in dealing with increasing numbers of dementia patients. Although the transition from informal (home-based) care to formal (institutional) care is often a function of dementia stage, for those with early dementia there is currently no definitive evidence showing that informal or formal care provides a higher QoL, particularly where informal care is favored for local cultural reasons. This paper outlines the research protocol for a study comparing formal and informal care in Malaysia. It seeks to provide evidence regarding which is more appropriate and results in higher QoL in early dementia.Methods: This is a quasi-experimental study design involving 224 early dementia patients from both nursing home and community settings. Participants will be assessed for cognitive severity, QoL, needs, activities of daily living, depression and social isolation/connectedness by using the Mini-Mental State Examination (MMSE), Cognitive Impairment Scale – 4 items (CIS-4), EUROPE Health Interview Survey-Quality of Life (WHO8), Assessment of Quality of Life (AQoL8), Camberwell Assessment of Need for the Elderly – Short Version (CANE-S), Barthel Index (BI), Cornell Scale for Depression (CSDD), Geriatric Depression Scale – 15 items (GDS-15), and Friendship Scale (FS) respectively.Conclusion: This study aims to provide a better understanding of care needs in early dementia. Given population aging, the study findings will provide evidence assisting decision-making for policies aimed at reducing the burden of caregiving and preserving the QoL of dementia patients.

scholarly journals Az informális ellátás mérése és egészség-gazdaságtani értékelése

2017 ◽  
Vol 158 (35) ◽  
pp. 1363-1372
Author(s):  
Zsombor Zrubka
Keyword(s):  
Quality Of Life ◽  
Health Economic ◽  
Informal Care ◽  
Economic Assessment ◽  
Future Research ◽  
Health Related Quality ◽  
Practical Applications ◽  
Related Quality ◽  
Health Related

Abstract: Informal care is non-financed care outside the realm of formal healthcare, which represents an increasing challenge for aging societies. Informal care has frequently been neglected in health economic analyses, while in recent years its coverage has increased considerably in the international scientific literature. This review summarizes the methodology of the health-economic assessment of informal care, including the objective and subjective metrics of caregiver burden, its financial and non-financial valuation and practical applications, with special emphasis on the introduction of care-related quality of life instruments (e.g. Care Related Quality of Life – CarerQoL instrument). Care-related quality of life is a different entity from health-related quality of life, the two cannot be combined, so their joint evaluation requires multi-criteria decision analysis methods. Therefore, it is important to determine the societal preferences of care-related quality of life versus health-related quality of life, and map the relationship of care-related quality of life with time. The local validation of tools measuring care-related quality of life, its more widespread practical application and the analysis of its effect on decision making are also important part of the future research agenda. Orv Hetil. 2017; 158(35): 1363–1372.

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