Quality Of Life In Family Caregivers Research Articles

Research Synthesis Related to Oncology Family Caregiver Spirituality in Palliative Care.

Background: Family caregivers are central to the delivery of serious illness care and also have needs related to their role and experience. One aspect of the family caregiver quality of life (QOL) that has received less attention is caregiver spirituality. Objectives: The research objectives for this analysis were (1) Describe spirituality in oncology family caregivers. (2) Determine the impact of palliative care interventions on spirituality and related variables in oncology family caregivers. (3) Describe findings from the research literature related to spirituality in family caregivers. The authors include two nurse researchers (BF, TB) and a physician (MK) who conducted these studies and a board-certified chaplain (PG) who contributed his expertise in chaplaincy. Design: This study synthesized data from seven earlier studies by the investigators from their research in family caregiving and also compared findings to the literature. Setting/Subjects: Subjects were family caregivers (n = 1039) of patients with cancer from studies conducted primarily in the Western United States. Measurements: The key spirituality instruments used were the Functional Assessment of Chronic Illness Therapy tool and the City of Hope QOL tool. Results: Spirituality was identified as important to family caregivers and most caregivers reported a religious affiliation. Living with uncertainty was consistently reported as the worst aspect of QOL/spirituality. Having a sense of purpose and meaning was the highest rated area. Conclusions: The authors' research synthesis and the literature support the importance of additional research and clinical focus in family caregiver spirituality in serious illness care.

Language Validation and Cultural Adaptation of the Italian Version of the Family Caregiver Quality of Life Scale.

Heart failure significantly impacts healthcare systems and society, affecting quality of life (QoL) due to its symptoms and continuous care needs. Nurses are crucial in managing heart failure, supporting both patients and caregivers who face physical, emotional, social, and spiritual challenges. The Family Caregiver Quality of Life (FAMQOL) scale evaluates caregivers' QoL across all dimensions. This study aims to translate and culturally adapt the FAMQOL from English to Italian, enhancing its utility in nursing research and practice to better identify and support caregiver well-being. Following EORTC guidelines (2017), the FAMQOL underwent linguistic validation and cultural adaptation. This included independent forward translations from English to Italian, back translations, and reconciliation discussions to produce a testable translation. A pilot test with 15 caregivers assessed the questionnaire's acceptability and comprehensibility. Linguistic adjustments ensured the questionnaire's understandability in Italian. Interviews confirmed its acceptability and comprehensibility, with minor modifications enhancing clarity. The translation process successfully adapted the FAMQOL for Italian caregivers. This tool is essential for nursing research and practice, providing a culturally relevant assessment of the burden of care. It allows targeted interventions to support health workers, intercepting the QoL of caregivers early and, consequently, the well-being of patients with heart failure.

Is more care recipient time at home also a family caregiver-centered quality of life measure?

Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home-days in the emergency department (ED), inpatient (IP) care, and post-acute care (PAC)-to understand how care recipient days not at home correspond to family caregiver QoL. Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self-rated health, depressive symptoms, and subjective burden). In the 6-month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%-3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self-rated health (-0.1%). An IP day had a slight protective effect (-0.2 to -0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (-0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL. Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver-centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL.

Quality of Life of the Family Caregivers of Children with the Cerebral Palsy and its Determinants: A Study from India

abstract Introduction: The responsibility of caring for a child with cerebral palsy (CP) at home can be challenging to the caregiver’s and children’s quality of life (QoL). This study was designed to assess the QoL and its determinants amongst family caregivers of children with CP. Materials and Methods: A study was conducted in a Tertiary Care Hospital in Yavatmal, Maharashtra, from March to May 2021, involving 126 participants selected through systematic random sampling. QoL was assessed using the World Health Organization QoL Brief Version scale. The data were analyzed using the statistical software, Epi Info Version 7.2. Results: The mean ± standard deviation of the overall QoL of family caregivers of CP children was 66.7 ± 1.44. The study found a significant association of QoL with the age of the caregiver, residence, education, socio-economic class, total number of children, health insurance and accessibility of services. Conclusion: More than half of the study participants exhibited low overall, physical, social and environmental QoL, influenced by various determinants.

Motor and non-motor outcome in tremor dominant Parkinson’s disease after MR-guided focused ultrasound thalamotomy

Background and objectivesMagnetic Resonance-guided Focused Ultrasound (MRgFUS) is an emerging technique for the treatment of severe, medication-refractory tremor syndromes. We here report motor and non-motor outcomes 6 and 12 months after unilateral MRgFUS thalamotomy in tremor-dominant Parkinson’s disease (tdPD).Methods25 patients with tdPD underwent neuropsychological evaluation including standardized questionnaires of disability, quality of life (QoL), mood, anxiety, apathy, sleep disturbances, and cognition at baseline, 6 and 12 months after MRgFUS. Motor outcome was evaluated using the Clinical Rating Scale for Tremor (CRST) and Movement Disorder Society–Unified Parkinson’s Disease Rating Scale (MDS-UPDRS). In addition, side effects and QoL of family caregivers were assessed.Results12 months after MRgFUS significant improvements were evident in the tremor subscores. Patients with concomitant rest and postural tremor showed better tremor outcomes compared to patients with predominant rest tremor. There were no differences in the non-motor assessments. No cognitive decline was observed. Side effects were mostly transient (54%) and classified as mild (62%). No changes in the caregivers' QoL could be observed.ConclusionWe found no changes in mood, anxiety, apathy, sleep, cognition or persistent worsening of gait disturbances after unilateral MRgFUS thalamotomy in tdPD. Concomitant postural tremors responded better to treatment than predominant rest tremors.

Comparative Analysis of Quality of Life of Family Caregivers of Patients With Heart Failure and Cancer Who Receive Palliative Care.

Quality of life (QoL) is the criterion-standard outcome in palliative care for patients with various illnesses and their family caregivers. There is a need to determine the factors affecting caregivers' QoL in each population and the differences between groups to design differentiated intervention strategies. The aims of this study were to compare the role adoption, social support, and QoL of family caregivers of patients with heart failure and cancer in palliative care and to examine the determinants of QoL. A comparative study was conducted with the family caregivers of patients with cancer (n = 81) and heart failure (n = 80) in palliative care. Quality of life in life-limiting situations, role adoption, and social support questionnaires were also administered. A χ2 test, Student t test, and Mann-Whitney U test were used for between-group comparisons. Multiple linear regression was used to examine the effects of the correlated variables on caregivers' QoL. Caregivers of patients with heart failure had better QoL (P = .006) and lower tangible social support (P = .007) than caregivers of patients with heart failure. No differences were found in caregiver role adoption between the groups. Linear regression indicated that for caregivers of patients with cancer, social support, role adoption, caregiver age, and patient functional status affect caregiver QoL. For caregivers of patients with heart failure, role adoption and patient functional status are predictors of QoL. Overall, healthcare professionals should focus on improving social support and caregiver role adoption and provide greater attention to the QoL of caregivers of patients with cancer.

Family caregiver quality of life and symptom burden in patients with hematological cancer: A Danish nationwide cross-sectional study

ObjectiveTo investigate the quality of life (QoL) and the impact of caregiving in family caregivers of hematological cancer patients and its association with patient symptom burden. MethodsA cross-sectional study including Danish patients (n = 375) and caregivers (n = 140). Caregivers completed scales for anxiety and depression using the Hospital Anxiety and Depression Scale, sleep quality using the Pittsburgh Sleep Quality Index, health related QoL using the 12-item Short-Form Health Survey, and caregiver roles using the Caregiver Roles and Responsibilities Scale. Patients reported symptoms using the MD Anderson Symptom Inventory. Analysis of covariance was used to examine associations between patient symptom burden and caregivers’ QoL outcomes. ResultsThe results show that caregivers experience sleep difficulties, moderate anxiety, and reduced QoL. Patient symptom burden was significantly associated with caregiver anxiety (p = 0.009), and mental well-being (p = 0.002), while patient treatment status was a significant factor associated with caregiver anxiety (p = 0.016), depression (p = 0.009), emotional well-being (p = 0.002), and sleep (p = 0.01). ConclusionCaregivers of patients with hematological cancers undergoing active treatment face a high symptom burden, which significantly impacts their QoL, including sleep, psychological well-being, and emotional health. Patients reported a high symptom burden, and patient symptom burden was significantly associated with caregiver QoL. Adequate patient and caregiver support is needed to promote their well-being and mitigate adverse health effects in caregivers, and this should be acknowledged in the context of caring for patients with hematological cancer.

Quality of Life of Family Caregivers of Patients Undergoing Dialysis: A Literature Review.

Dialysis is a long-term treatment for chronic kidney failure. Family caregivers play a significant role in the care of patients undergoing dialysis. The quality of life (QoL) of family caregivers is related to the quality of care provided to patients undergoing dialysis. This recent literature review aimed to synthesize the QoL experienced by caregivers of family members undergoing dialysis. This literature review employed four online databases, including SCOPUS, PubMed, ScienceDirect, and Web of Science. The extracted articles were further screened on the basis of the PRISMA guidelines. In this review, articles were selected on the basis of the following eligibility criteria: double-blind peer-reviewed articles, articles written in English language and published between 1 January 2013 and January 2023. This review used thematic synthesis. Four analytical themes emerged, including physical capacity, social relations, psychological state, and environment. All of these themes correspond to the dimensions of QoL. The QoL of family caregivers of patients undergoing dialysis must be considered. A good QoL of these caregivers will improve the balance of life and further increase the ability and quality of care they provide for family members undergoing dialysis.

Caregiver Burden and Quality of Life among Caregivers of Cancer Patients in Ahvaz, 2021 - 2022: A Cross-Sectional Study

Background: Reducing the care burden of family caregivers and improving their quality of life is one of the important goals of palliative care. Objectives: This study aimed to determine the caregiver burden (CB) and its relationship with the quality of life (QOL) of family caregivers of cancer patients admitted to Baqai 2 Hospital in Ahvaz City from 2021 to 2022. Methods: Using a convenience-sampling method, this cross-sectional descriptive-analytical study was carried out on 178 family caregivers of cancer patients. The data collection instrument included a three-part questionnaire. The first part included demographic information of family caregivers of cancer patients, the second part included the caregiver burden scale (CBS) to investigate the CB of the caregivers, and the third part included the caregiver quality of life index-cancer (CQOLC) scale to investigate QOL in caregivers. This questionnaire was standardized and had acceptable validity and reliability. Data analysis was carried out using descriptive and analytical statistics tests using SPSS V22 software. Results: The mean and SD of participants' CB and QOL were 15.79 ± 50.23 and 80.84 ± 23.29, respectively. The majority of caregivers (47.8%) had moderate CB, and the QOL of caregivers decreased significantly with an increasing CB (P < 0.001). The results showed that caregivers' QOL was influenced by factors such as CB, place of residence (rural area), duration, and type of disease (P < 0.001). Also, CB was influenced by factors such as marital and employment status, level of education, and the family relationship with patients (P < 0.001). Conclusions: The results of the present study showed that the QOL of family caregivers of cancer patients decreased with increasing CB. Therefore, authorities and oncology nurses should design necessary plans to develop interventions to reduce CB and improve the QOL of family caregivers of cancer patients.

Quality of Life Among Family Caregivers of Disabled Children in Saudi Arabia.

The physical and mental health of parents can be adversely affected by their child's disability, leading to a potential decline in their overall Quality of Life (QoL). This research aimed to determine the QoL of family caregivers and compare this based on sociodemographic factors and child characteristics. An analytical cross-sectional design was employed, and data were collected from multiple rehabilitation centers for children with special needs and learning disorders in the Kingdom of Saudi Arabia. The study sample comprised 95 family caregivers who completed a self-structured questionnaire. The questionnaire included sections on sociodemographic characteristics, child characteristics, and caregivers' QoL assessed using the RAND 36-Item Short Form Health Survey (SF-36). The collected data were analyzed using the IBM Corp. Released 2022. IBM SPSS Statistics for Windows, Version 29.0. Armonk, NY: IBM Corp, employing descriptive statistics and multivariate linear regression analysis. Our findings revealed that the overall mean QoL score among caregivers was 57, ranging from 12 to 94. There were no statistically significant differences in QoL scores based on caregivers' age, gender, occupational status, or income. However, further analysis indicated significant associations between certain factors and specific domains of QoL. Specifically, caregiver education was found to be associated with role limitations due to emotional problems, while relationships with disabled children were linked to emotional well-being. The severity of the child's disability and the presence of another child with a disability in the family were associated with the bodily pain domain. Additionally, the presence of another child with a disability had an impact on perceived change in the health domain. The QoL of family caregivers varied, highlighting the significant challenges faced by certain individuals. Factors such as education level, the relationship with the child, the severity of the disability, and the presence of multiple disabled children in the family were identified as influencing caregivers' QoL. These findings emphasize the importance of developing targeted interventions that can address emotional well-being and fatigue management while promoting a supportive society.

#5556 QUALITY OF LIFE IN FAMILY CAREGIVERS OF END STAGE KIDNEY DISEASE PATIENTS: A PROSPECTIVE STUDY

Abstract Background and Aims Family caregivers of patients with end stage kidney disease (ESKD) face the challenge of demanding patients’ care, in addition to their own daily tasks, which affect their well-being and quality of life (QoL). The aim of this prospective study was to assess and describe the QoL of family caregivers of ESKD patients at the beginning of kidney replacement therapy (KRT) and one year later. Method Sixty - two ESKD patients and their caregivers were recruited. Caregivers’ QoL was assessed with the Short Form-36 questionnaire and EuroQol-5Dimension-3Level. QoL of caregivers and patients was measured twice, three months after initiation of KTR (T0) (53 patients started hemodialysis and 9 peritoneal dialysis) and after the first 12 months of KTR(T1), in order to investigate the possible changes of QoL during this crucial period. Results The mean value (Table 1) of caregivers’ physical component summary (PCS) subscale was found to change significantly during study period (T0: M = 54.21, SD = 8.06 vs T1: M = 51.58, SD = 10.46, (t(61) = 2.02, p = .048). Caregivers presented a statistically significant decrease (p <.05) in physical health after one year of KRT. Likewise, the EQ-5D Index and the EQ-5D visual analogue scale (VAS) showed a statistically significant decline (p = .046 and p<.001 respectively). Finally, correlation of means of QoL dimensions between ESKD patients and their caregivers did not yield statistical significance in the particular longitudinal study. Conclusion The results provide evidence that the overall caregivers’ QoL scores deteriorated over the one-year period of KTR. Further studies of larger sizes and with a longer duration will probably better define the QoL variations of ESKD patients’ caregivers. Both groups may be benefit from an educational program before patients initiate KTR.

Impact of Parkinson's Disease on Caregiver Quality of Life in Japan.

Parkinson's disease (PD) adversely affects the quality of life (QoL) of not only patients but also their caregivers. To determine the factors that most impact the QoL of family caregivers of patients with PD in a large Japanese population using data from the Japanese Quality-of-Life Survey of Parkinson's Disease (JAQPAD) study. Questionnaires, including the Parkinson's Disease Questionnaire-Carer (PDQ-Carer), were distributed to patients and their caregivers. Univariate and multivariate regression analyses were performed with the PDQ-Carer Summary Index (SI) score as the dependent variable to determine the factors that impact caregiver QoL. Overall, 1,346 caregivers were included in the analysis. Female sex, unemployment, caring for a patient with a high-level need for nursing care, and a high Nonmotor Symptoms Questionnaire score were factors with a significant negative impact on caregiver QoL. Results from this study identified several factors that affect caregiver QoL in Japan.

Kualitas Hidup Family Caregiver Pasien Kanker dan Faktor-Faktor yang Mempengaruhinya

Background: The increase of cancer diagnosis in Indonesia needs special attention because cancer causes crisis not only in patient’s life but also to family caregivers. Studies depict that a family caregiver’s quality of life (QOL) influences patient’s. Therefore, it is necessary to pay special attention to the caregiver’s QOL to generate a holistic approach for cancer patients.Objective: This study aimed to portray family caregivers of cancer patients’ QOL and its associated factors.Methods: In this analytical crossectional study, 60 family caregivers of cancer patients were recruited. The Caregiver Quality of Life Index-Cancer (CQOLC) was used to assess the QOL of family caregivers and then analyzed using descriptive statistics and linear regression.Results: The mean age of the family caregiver was 40±13.67, and 53% were male. The mean score of CQOLC was 43.95 (±17.83). Age was negatively associated with CQOLC score (β= -3.389, p=.034) which meant positively associated with QOL whereas duration of caregiving (β= 2.167, p=.021), cancer stage (β= 1.299, p=.046), and burden of family caregiver (β= 1.292, p=.000) were positively associated with CQOLC score which meant negatively associated with QOL.Conclusion: The study found that the duration of caregiving, cancer stage, and burden were negatively associated with the QOL of the family caregiver. Nursing intervention such as caregiver assistant is needed to decrease the burden to family caregivers, especially when caring for cancer patients with advanced stages.

The relationship between satisfaction with care and quality of life among family caregivers of of patients living with terminal cancer in general wards: a cross-sectional study

Family caregivers of terminal cancer patients have reported experiencing low quality of life (QOL). Satisfaction with care has gained attention as a factor that correlates with QOL. To examine the relationship between 'satisfaction with care' and QOL of family caregivers of patients with terminal cancer. The study used a cross-sectional design and included family caregivers of patients with terminal cancer in general wards. The authors assessed family caregivers' QOL using the caregiver quality of life index-cancer; a multivariable regression analysis was conducted to identify the factors associated with QOL. A total of 51 family caregivers enrolled in the study. Their satisfaction with care and the months since their initial diagnosis were positively associated with a more positive QOL. Satisfaction with care is correlated with QOL among family caregivers of patients with terminal cancer in general wards. Enhancing family caregivers' satisfaction with care may contribute to improving their QOL.

Quality of Life of Family Caregivers of Cancer Patients in a Developing Nation.

Quality of life (QOL) of family caregivers of cancer patients is usually affected due to increase in caregiver burden. Their QOL has not garnered much attention by many including the health professionals and community. This study aims to explore the QOL of family caregivers of cancer patients in a multi-ethnic country in Asia and to investigate its associate factors. This is a cross-sectional study where family caregivers and patients who were diagnosed of cancers within 12 months were recruited. QOL of caregivers were measured using The Caregiver Quality of Life Index-Cancer (CQOLC). Psychological distress was measured using Hospital anxiety and depressive scale. Logistic regression analysis was performed to determine the related factors of QOL of caregivers. A total of 458 patients/caregiver pairs were included. Symptoms of anxiety and depression reported by caregivers were 24.9% and 24.2% respectively. Caregivers of patients with solid tumors have better CQOLC score compared to those who cared for patients with hematological cancers (91.25 vs 86.75). Caregivers of non-Malay ethnicity, those caring for patients with advanced stage cancer and with hematological cancers had significantly poorer QOL. QOL of caregivers are also significantly affected when patients demonstrated anxiety symptoms. This study provides detailed evaluation of the QOL of caregivers of cancer patients in Malaysia. The significant psychological distress and low caregiver QOL indicate the urgent need for comprehensive supports for caregivers with cancer patients, especially those caring for patients with haematological cancers.

Factors effecting quality of life for family caregivers of cancer patients in Kenya.

Characteristics, including age, educational level, economics, and geographical setting during care provision significantly affect quality of life (QoL) among cancer patient caregivers in high-income countries. Investigation in middle/low income countries is limited. To explore the factors associated with QoL among family caregivers (FCG's) of cancer patients in Kenya. This was a correlational study conducted at the largest teaching and referral hospital in Kenya. The study enrolled 164 family caregivers of cancer patients. The QoL (Family Version) was used to measure Quality of Life. Data collection was done using interviewer-administered questionnaires. A student t-test and Pearson chi-square were used to determine the association between personal, social, and disease characteristics and family caregiver quality of life. The average mean score of family caregiver QoL was 55.8 (SD±10.12) percent, which is lower than in other countries. There was a significant association between family caregiver quality of life (QoL) and level of education, relationship to the patient, caregivers' ability to carry out normal activities, and caregiver knowledge of the stage of cancer.

Correlation between Quality of Life and Burden in Caregivers of Advanced Stage Cancer Patients on Best Supportive Care.

Patients with advanced cancer with incurable diseases are generally cared for by their families in India. There is a lack of data on the perceived caregiver burden, quality of life (QOL) of patients and caregivers in India, especially among cancer patients not on any oncologic management. We conducted a cross-sectional study among 220 patients of advanced cancer on best supportive care and their respective 220 family caregivers. Our primary objective was to identify a correlation between caregiver burden and QOL. After taking informed consent from both patients and caregivers, we assessed the QOL of the patient using the European Organization for the Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 15 Palliative Care (QLQ C15PAL) questionnaire from the patient, assessing the Caregiver Burden using Zarit Burden Interview, assessing the QOL of the caregiver using the WHO QOL BREF Questionnaire, in a single session during their routine follow-up in the Palliative Care Clinic of our institution. We noticed a statistically significant negative (Spearman) correlation between the Caregiver Burden as assessed by Zarit Burden Interview (ZBI) and the psychological (r = -0.302, P < 0.01), social (r= -0.498, P < 0.01) and environmental (r = -0.396, P < 0.01) domains of the WHO QOL BREF Questionnaire. Caregiving Burden as assessed ZBI total score was noted to have a statistically significant negative correlation with physical functioning (r = -0.37, P < 0.01), emotional functioning (r = -0.435, P < 0.01) and global QOL scores (r = -0.499, P < 0.01) assessed from the patient using the EORTC QLQ C15 PAL questionnaire. It also had a statistically significant small positive correlation with EORTC QLQ C15 PAL symptom scores, such as dyspnoea, insomnia, constipation, nausea, fatigue and pain. The median caregiver burden score was 39, showing higher burden as compared to previous studies. Caregivers who were spouses of the patient, illiterate, homemakers, with low-income families reported higher burden. A high perceived caregiving burden is associated with impaired QOL in family caregivers of advanced cancer patients on best supportive care. Multiple patient related factors and demographic factors tend to affect burden of the caregiver.

Examination of family caregivers of advanced cancer patients within the scope of the cancer family caregiving experience model: An embedded mixed-methods design.

This study aimed to examine the stressors and contextual factors that affect the quality of life (QoL) of caregivers of advanced cancer patients and to address their caregiving experiences. The study had an embedded mixed-methods design and was conducted in the medical oncology unit of a training and research hospital in Turkey. In the quantitative phase, 125 patients with advanced cancer and their family caregivers were included. In the qualitative phase, 21 family caregivers were included. The analysis of quantitative data was carried out using SPSS 25.0 statistical program, and qualitative data were carried out using Collaizi's seven-step descriptive analysis approach. QoL was determined as the dependent variable and evaluated with Caregiver QoL Index-Cancer (CQOLC). The symptoms, care dependency of patients, and preparedness to the care of caregivers showed a direct impact on the CQOLC. Income level, employment status, and daily caregiving hours demonstrated a direct effect on the CQOLC. Four themes emerged from the interviews: Understanding the dynamics of the caregiving process, losing control of life during the caregiving process, limitation of socio-economic freedom in the caregiving process, and the effort to hold on to life in the caregiving process. The cancer family caregiving experience model is a useful model for evaluating the QoL of caregivers from a multidimensional perspective. Health care professionals should not forget that the QoL of family caregivers should be evaluated in multiple ways, and education programmes for family members should be structured.

Factors Associated with the Quality of Life in Family Caregivers of People with Dementia in Taiwan

Objectives: Previous studies showed that caregivers of patients with dementia (PWD) have lower quality of life (QoL) due to several clinical factors related to caregivers and their ill relatives. In this study, we intended to assess the associated factors of QoL in caregivers of PWD in Taiwan. Methods: A cross-sectional survey with 270 dyads of PWD and their caregivers was conducted. We assessed family members' depressive symptoms, anxiety, affiliate stigma, care burden, and QoL, and patients' cognition, severity of dementia, self-care, and mobility skills, as well as neuropsychiatry symptoms of PWD. Results: Caregivers' longer years of education were significantly associated with better QoL in environment domains (β = 0.21, p &lt; 0.01), while the children of caregivers had significantly better QoL in physical domains compared to spouses of caregivers (β = 0.28, p &lt; 0.05). Patients with a past history of psychiatric hospitalization (β = 0.11, p &lt; 0.05) and longer caregiving time (β = 0.13, p &lt; 0.05) were significantly related to better QoL in environment domain. High levels of depression were associated with significantly lower QoL in physical health (β = −0.24, p &lt; 0.05) and psychological domains (β = −0.32, p &lt; 0.01), while more anxiety symptoms were related to significantly lower QoL in physical health (β = −0.26, p &lt; 0.01) and environment domains (β = −0.27, p &lt; 0.01). Higher levels of affiliate stigma were significantly related to lower QoL of caregivers in psychological (β = −0.23, p &lt; 0.01), social relationships (β = −0.27, p &lt; 0.01), and environment (β = −0.19, p &lt; 0.05) domains. Higher levels of care burden were significantly related to lower QoL of caregivers in physical health (β = −0.24, p &lt; 0.01) and environment (β = −0.23, p &lt; 0.05) domains. Conclusion: Caregiver's depression, anxiety, affiliate stigma, and care burden were found to play a critical role in maintaining QoL of family caregivers. We suggest developing effective programs as a direction of future intervention for PWD to improve their QoL.

Family caregiver quality of life and the care provided to older people living with dementia: qualitative analyses of caregiver interviews

BackgroundWhile studies have examined the quality of life (QoL) of family caregivers for people living with dementia, it is not yet clear how these caregivers’ quality of life affects their ability to meet the care demands of their loved ones. The purpose of the study was to explore caregivers’ perceived quality of life in relation with the care provided to persons with dementia.MethodsTwenty-three caregivers participated in this study. These caregivers participated in focus groups or one-on-one interviews after completing questionnaires regarding their own quality of life as well as the care provided to their loved ones with dementia. The interview and focus group transcripts were analyzed using qualitative description methodology.ResultsRegarding the relationship between caregiver QoL and the care provided to older people with dementia, the following themes were derived: (1) needs of the person with dementia; (2) caregivers’ ability to cope with progressing needs of the care recipient; (3) availability and accessibility of support for the caregiver; (4) unmet needs of the caregiver; and (5) ability of the caregiver to meet their own progressing needs as the condition of the care recipient deteriorates.ConclusionsFindings from this study suggest that caregiver quality of life is important for the care they provide to their loved ones living with dementia. The study highlights the need for the provision of much needed support for caregivers and older people living with dementia. These issues are particularly important during and post-pandemic.