scholarly journals COMMON UNMET NEEDS OF DEMENTIA CAREGIVERS AND HOW THESE DIFFER BY DISEASE STAGE AND RACE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S550-S550
Author(s):  
Quincy M Samus ◽  
Danetta Sloan ◽  
Jeannie-Marie Leoutsakos ◽  
Betty Black ◽  
Deirdre Johnston
Keyword(s):  
Family Caregivers ◽  
Intervention Studies ◽  
Disease Stage ◽  
Care Needs ◽  
Dementia Caregivers ◽  
Cross Sectional ◽  
Coordination Model ◽  
Caregiver Needs ◽  
The Impact ◽  
African American Caregivers

Abstract This presentation (co-presentation Samus and Sloan) will use combined cross-sectional, baseline data from two intervention studies (n=-642) conducted in Maryland evaluating the impact of dementia care coordination model (MIND at home) to provide a detailed description of common modifiable unmet care needs of family caregivers of community-living persons with dementia (PWD), explore how care needs may differ by the disease stage of the PWD, and presence of racial disparities in care needs. Unmet caregiver needs were identified based on comprehensive in-home assessments using a standardized tool (JHDCNA 2.0) with 6 care domains and 18 items covering caregiver needs. Family caregivers were 77% women; 63 years old (mean); 60% White; and 52% adult children. The most prevalent needs were for education/resources (98%), legal (74%), mental health (44%), and informal support (43%). Needs varied based on dementia severity. African American caregivers (vs. white) had significantly more unmet caregiver needs at baseline (p<.001).

scholarly journals HOME IS WHERE THE HEART IS: OPTIMIZING AND TAILORING HOME AND COMMUNITY-BASED SUPPORT FOR DEMENTIA CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S549-S550
Author(s):  
Quincy M Samus ◽  
Nancy Hodgson ◽  
Joseph E Gaugler
Keyword(s):  
Family Caregivers ◽  
Disease Stage ◽  
Care Needs ◽  
Community Based ◽  
Dementia Caregivers ◽  
Health And Wellbeing ◽  
Dementia Patients ◽  
Home Based ◽  
Diverse Community ◽  
At Home

Abstract Family caregivers, often “de facto” members of the care team for persons with dementia, play a central role in ensuring safety, support, quality of life, and continuity of care. Most often, they provide this care for loved ones at home and over a long period of time, as the illness progresses and care need intensifies. This session will provide a unique understanding of potential ways to optimize support for family caregivers in provision of day-to-day care in the home by examining often-overlooked factors influential in the health and wellbeing for both caregiver and persons with dementia. Presentations will draw from three large community-based trials testing interventions to support dementia caregivers. Drs. Samus and Sloan will present on common unmet needs identified by family caregivers and explore how needs differ by disease stage and race. Dr. Fortinsky will present baseline caregiver care-related challenges in a diverse cohort of caregivers and the effects of a caregiver intervention designed to mitigate these challenges. Dr. Hodgson will present the common symptoms clusters among home-dwelling persons with dementia patients and how these are associated with caregiver distress. Dr. Jutkowitz will discuss factors influencing dementia caregiver’s willingness to pay for help at home. Findings from this session will help elucidate care needs that matter most to family caregivers in diverse community-living cohorts and how we might optimize and tailor supportive home-based interventions to target these needs and challenges.

scholarly journals Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

2021 ◽  
Vol 18 (7) ◽  
pp. 3688
Author(s):  
Perla Werner ◽  
Aviad Tur-Sinai ◽  
Hanan AboJabel
Keyword(s):  
Family Caregivers ◽  
Emotional Support ◽  
Online Survey ◽  
Behavioral Model ◽  
Cross Sectional Study ◽  
Enabling Factors ◽  
Dementia Caregivers ◽  
Predisposing Factor ◽  
Cross Sectional ◽  
Medical Specialists

The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.

scholarly journals The effect of breakfast on appetite regulation, energy balance and exercise performance

2015 ◽  
Vol 75 (3) ◽  
pp. 319-327 ◽  
Author(s):  
David J. Clayton ◽  
Lewis J. James
Keyword(s):  
Energy Balance ◽  
Energy Expenditure ◽  
Energy Intake ◽  
Exercise Performance ◽  
Intervention Studies ◽  
Precise Determination ◽  
Positive Energy ◽  
Cross Sectional ◽  
Positive Energy Balance ◽  
The Impact

The belief that breakfast is the most important meal of day has been derived from cross-sectional studies that have associated breakfast consumption with a lower BMI. This suggests that breakfast omission either leads to an increase in energy intake or a reduction in energy expenditure over the remainder of the day, resulting in a state of positive energy balance. However, observational studies do not imply causality. A number of intervention studies have been conducted, enabling more precise determination of breakfast manipulation on indices of energy balance. This review will examine the results from these studies in adults, attempting to identify causal links between breakfast and energy balance, as well as determining whether consumption of breakfast influences exercise performance. Despite the associations in the literature, intervention studies have generally found a reduction in total daily energy intake when breakfast is omitted from the daily meal pattern. Moreover, whilst consumption of breakfast supresses appetite during the morning, this effect appears to be transient as the first meal consumed after breakfast seems to offset appetite to a similar extent, independent of breakfast. Whether breakfast affects energy expenditure is less clear. Whilst breakfast does not seem to affect basal metabolism, breakfast omission may reduce free-living physical activity and endurance exercise performance throughout the day. In conclusion, the available research suggests breakfast omission may influence energy expenditure more strongly than energy intake. Longer term intervention studies are required to confirm this relationship, and determine the impact of these variables on weight management.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

scholarly journals Does the cancer patient's disease stage matter? A comparative study of caregivers' mental health and health related quality of life

2012 ◽  
Vol 10 (3) ◽  
pp. 189-196 ◽  
Author(s):  
Ellen Karine Grov ◽  
Berit Taraldsen Valeberg
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cancer Patients ◽  
Cross Sectional Study ◽  
Disease Stage ◽  
Cross Sectional ◽  
Health Related Qol ◽  
Health Related ◽  
The Impact

AbstractObjective:Cancer affects both patients and their caregivers. Caregiver burden may change during different stages of the patients' cancer trajectory. Limited research has focused on the impact of being a caregiver, assessed by the caregiver's mental health and quality of life (QOL) during the curative and the palliative phases of the patient's disease. The aim of this study is to compare caregivers of cancer patients during the curative and a palliative phases with respect to their mental health and health-related QOL.Method:This descriptive, cross-sectional study combines data from two studies. The first group consists of caregivers of patients with cancer in the late palliative phase and the second group consists of caregivers of outpatients with cancer who suffer from pain and/or use analgesics. Data were collected by means of standardized measures and analyzed with descriptive statistics.Results:Based on this material, no significant differences in mental health and health- related QOL were revealed for caregivers of cancer patients in the palliative and the curative phases, respectively. Neither education level in the caregivers, nor the patients' functional status influenced caregivers' mental health or QOL. Younger caregivers seem to have better physical QOL.Significance of results:Being caregivers of cancer patients seems to have a similar pattern of impact on caregivers' mental health and quality of life regardless of the patient's disease stage. We share some reflections about the way in which the cancer stage is divided and the appropriateness of such selection for measuring caregivers' mental health and QOL. Additionally, we discuss the use of generic instruments for measuring specific contexts and particular samples.

scholarly journals RELATIONSHIP BETWEEN FAMILY INTERACTION, FAMILY BURDEN AND QUALITY OF LIFE AMONG CAREGIVERS OF PATIENTS WITH EPILEPSY

2016 ◽  
Vol 4 (4) ◽  
pp. 108-114
Author(s):  
M. Senthil
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Demographic Data ◽  
Family Interaction ◽  
Interaction Pattern ◽  
Family Burden ◽  
Cross Sectional ◽  
Quality Of Life Scale ◽  
The Impact

Living with epilepsy imposes great challenges on both patients and their family caregivers but most researchers only explored the impact on patients, with less attention given to family caregivers. Our study intended to explore the needs and problems of epilepsy family caregivers of epilepsy patients encountered during the caregiving process. The present study was an attempt to assess the relationship between Family interaction pattern, family burden schedule and Quality of life of the caregivers of individuals with epilepsy. This study was conducted at the Ranchi Institute of Neuro-Psychiatry and Allied Sciences, Ranchi. It was a cross sectional study and purposive sampling was used. The present study was conducted among 60 caregivers of epilepsy, those who were willing to participate and those who have satisfied with inclusion and exclusion criteria have been included in the study. The socio demographic data sheet had been used for collecting socio demographic details of the caregivers of individuals with epilepsy. Family interaction pattern scale, family burden interview schedule and WHO Quality of life scale were applied on the caregivers of individuals with epilepsy. Statistical analysis was performed by using the SPSS programme 16.0 version. The result found that family interaction pattern has effect on family burden and quality of life. Likewise family burden has greater impact on quality of life. The study highlights the need for family interventional programs to address the specific issues related to family interaction, burden and quality of life of caregivers.

scholarly journals A Community Resource Referral Intervention for Informal Caregivers of People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 148-149
Author(s):  
Kelly Boyd ◽  
Kate Doyle ◽  
Soo Borson ◽  
Elbert Huang ◽  
Stacy Lindau ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Text Message ◽  
High Volume ◽  
Eligibility Criteria ◽  
Dementia Caregivers ◽  
Black African ◽  
People With Dementia ◽  
Caregiver Needs ◽  
Caregiver Interventions ◽  
The Impact

Abstract The National Alzheimer’s Project Act (PL-111-375) calls for connecting dementia caregivers to community resources, but few caregiver interventions have focused on this component of support. CRx-D is a theory-driven, scalable intervention that addresses common caregiver needs through: (1) education to normalize needs, (2) coaching on resource activation and (3) tools to promote access, including a printed list of nearby resources (“HealtheRx-D”), an online resource finder, proactive and ongoing text message support. We pretested the intervention arm of CRx-D among 10 caregivers of PWD to assess appropriateness, feasibility and fidelity. Patients presenting for care at 3 outpatient clinics were screened for eligibility, enrolled and given the intervention (12/19-01/20). Of 1,038 patients approached, 12 were caregivers of PWD; 10/12 met all eligibility criteria. All 10 eligible caregivers were enrolled in the study. Caregivers were, on average, 49 years old (range, 29-65), primarily female (n=8), Black/African American (n=9), and half were children of PWD (n=5). At baseline, several caregivers indicated unmet caregiving or health needs (caregiving education [n=7], free/affordable meals [n=5] and financial assistance [n=5]) indicating the intervention’s appropriateness. Intervention components were delivered as intended to all caregivers, although one caregiver provided a landline so could not receive texts. A scalable resource referral intervention for caregivers is appropriate. Delivery is feasible with high fidelity. Identifying caregivers at the point of their own healthcare requires high volume screening. These findings will inform a randomized controlled trial of 344 caregivers of PWD to evaluate the impact of CRx-D on caregiver self-efficacy and satisfaction with care.

scholarly journals Meal irregularity and cardiometabolic consequences: results from observational and intervention studies

2016 ◽  
Vol 75 (4) ◽  
pp. 475-486 ◽  
Author(s):  
Gerda K. Pot ◽  
Suzana Almoosawi ◽  
Alison M. Stephen
Keyword(s):  
Risk Factors ◽  
Large Scale ◽  
Cardiometabolic Risk ◽  
Intervention Studies ◽  
Cardiometabolic Risk Factors ◽  
Obese Women ◽  
Cross Sectional ◽  
Meal Patterns ◽  
The Metabolic Syndrome ◽  
The Impact

Studying irregular meal patterns fits in with the latest research focusing not only on what people eat but also when they eat, also called chrono-nutrition. Chrono-nutrition involves studying the impact of nutrition on metabolism via circadian patterns, including three aspects of time: (ir)regularity, frequency and clock time. The present paper aimed to narratively review research on irregular meal patterns and cardiometabolic consequences. Only few cross-sectional studies and prospective cohort studies were identified, and most of these suggested that eating meals irregularly is associated with a higher risk of the metabolic syndrome and cardiometabolic risk factors, including BMI and blood pressure. This was supported by two randomised controlled intervention studies showing that consuming meals regularly for 2 weeks v. an irregular meal pattern, led to beneficial impact on cardiometabolic risk factors as lower peak insulin, lower fasting total and LDL-cholesterol, both in lean and obese women. In conclusion, the limited evidence on meal regularity and cardiometabolic consequences supports the hypothesis that consuming meals irregularly is adversely associated with cardiometabolic risk. However, it also highlights the need for more large-scale studies, including detailed dietary assessment to further advance the understanding of the impact of chrono-nutrition on public health.

scholarly journals The Level of Care Needs of Patients With Cancer and the Time-dependent Burden on Their Family Caregivers in Home Palliative Care: A Cross-Sectional Study

2021 ◽  
Author(s):  
Naoko Otsuki ◽  
Ryohei Yamamoto ◽  
Yukihiro Sakaguchi ◽  
Kento Masukawa ◽  
Tatsuya Morita ◽  
...  
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Clinical Characteristics ◽  
Cross Sectional Study ◽  
Time Dependent ◽  
Care Needs ◽  
Cross Sectional ◽  
Patients With Cancer ◽  
Care Services ◽  
Adjusted Logistic Regression

Abstract PurposeAlthough home care improves patients' quality of life (QOL), several studies have suggested that home care lowers the QOL and mortality of family caregivers. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified. MethodA survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients' care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used. ResultsThe time-dependent burden was identified as a major burden. An adjusted model showed a non-linear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07–2.12), 1.08 (0.43–2.57), 1.87 (1.01–3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden. ConclusionThe time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.

scholarly journals Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e051717
Author(s):  
Shuqin Zhu ◽  
Hanfei Zhu ◽  
Xintong Zhang ◽  
Kouying Liu ◽  
Zumei Chen ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Mainland China ◽  
Qualitative Studies ◽  
Care Needs ◽  
Cross Sectional ◽  
Quantitative Studies ◽  
Dying Patients ◽  
Hospice And Palliative Care

ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.

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