scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.


2018 ◽  
Vol 34 (2) ◽  
pp. 118-125 ◽  
Author(s):  
Jonathon Judkins ◽  
Irena Laska ◽  
Judith Paice ◽  
Priya Kumthekar

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups. Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being. Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains (“Rate your overall physical/psychological/social/spiritual well-being”). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL. Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.


2020 ◽  
Vol 22 (4) ◽  
pp. 913-920
Author(s):  
Linchong Pothiban ◽  
Chomphoonut Srirat ◽  
Nahathai Wongpakaran ◽  
Orawan Pankong

2018 ◽  
Vol 12 (5) ◽  
pp. 1648-1664 ◽  
Author(s):  
Sabrina L. Dickey ◽  
Motolani E. Ogunsanya

The purpose of this integrative review was to explore the impact of prostate cancer (PCa) on the quality of life (QoL) and factors that contribute to the QoL for Black men with PCa. Prostate is recognized as the prevalent cancer among men in the United States. Compared to other men, Black men are diagnosed more frequently and with more advanced stages of PCa. Black men also experience disproportionately higher morbidity and mortality rates of PCa, among all racial and ethnic groups. The initial diagnosis of PCa is often associated with a barrage of concerns for one’s well-being including one’s QoL. As a result, men must contend with various psychosocial and physiological symptoms of PCa survivorship. Whittemore and Knafl’s integrative review method was utilized to examine empirical articles from the electronic databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, PubMed, Project Muse, and Google Scholar. The time frame for the literature was January 2005 to December 2016. A synthesis of the literature yielded 18 studies that met the inclusion criteria for the integrative review. A conceptual framework that examined QoL among cancer survivors identified four domains that measured the QoL among Black PCa survivors: (a) physical; (b) psychological; (c) social; and (d) spiritual well-being. Social well-being was the dominant factor among the studies in the review, followed by physical, psychological, and spiritual. Results indicate the need for additional studies that examine the factors impacting the QoL among Black PCa survivors, using a theoretical framework so as to develop culturally appropriate interventions for Black PCa survivors.


2001 ◽  
Vol 13 (1) ◽  
pp. 93-106 ◽  
Author(s):  
Clive Ballard ◽  
John O'Brien ◽  
Ian James ◽  
Pat Mynt ◽  
Marisa Lana ◽  
...  

Many people with dementia reside in care facilities. Little is known about how key parameters impact upon their quality of life (QOL). All 209 people with dementia in six facilities received a standardized assessment (Neuropsychiatric Inventory [NPI], Barthel Scale, psychotropic drugs). One hundred twelve residents were assessed using Dementia Care Mapping, an observational method for QOL indices. Lower performance on activities of daily living (reduced well-being [WB] r = +0.39, p < .0001; social withdrawal [SW] r = +0.42, p < .0001; engagement in activities [EA] r = +0.31, p = .001) and taking psychotropics (WB 2.5 vs. 3.2, t = .2.3, p = .02; SW 11.4% vs. 2.7%, t = 3.0, p = .004; EA 56.5% vs. 71.9%; t = 3.5, p = .001) were associated with reduced QOL, but symptoms from the NPI were not. More focused prescribing of psychotropics and better staff training are essential.


2009 ◽  
Vol 21 (6) ◽  
pp. 1026-1030 ◽  
Author(s):  
C. Ballard ◽  
M. Margallo-Lana ◽  
J. T. O'Brien ◽  
I. James ◽  
R. Howard ◽  
...  

The majority of people with dementia develop behavioral and psychological symptoms of dementia (BPSD) at some point during their illness (Jeste et al., 2008). These symptoms, which are especially common among care home residents, are frequently distressing for the patients who experience them (Gilley et al., 2006; Jeste et al., 2008) and problematic for their professional and/or family caregivers. The starting point for our paper “Quality of life for people with dementia living in residential and nursing home care: the impact of performance on activities of daily living, behavioral and psychological symptoms, language skills, and psychotropic drugs” (Ballard et al., 2001) was to try and understand the impact of BPSD, function and language skills on quality of life in care home residents with dementia. Although there were frequent statements in previous work referring to the capacity of psychiatric and behavioral symptoms to reduce quality of life, we had been unable to identify any empirical evidence to support this clinical impression in a thorough literature review. The parallel validation of Dementia Care Mapping (DCM), predominantly a practice development tool, as an observational measure of well-being/quality of life (Kitwood and Bredin, 1997; Fossey et al., 2002) provided an excellent opportunity to examine this issue in a care home setting. The study focused on 209 people with dementia living in residential and nursing home care in north-east England in the U.K., who received a detailed assessment of BPSD, function and cognition. A DCM evaluation was completed for 112 of these individuals, providing a detailed observational measure of well-being, activities and social withdrawal as indices of quality of life over a six-hour daytime period. To our surprise, there was actually no association between well-being, social withdrawal or activities and BPSD. In contrast, there was a significant association between antipsychotic medication and reduced well-being, social withdrawal and activities respectively, even after controlling for the severity of behavioral disturbance. Using an arbitrary definition of “ill-being”, defined as a well-being score of less than zero, 5% of people not taking antipsychotics, 10% of people taking atypical antipsychotics and 22% of people taking typical antipsychotics were defined as having ill-being. Lower levels of functional ability were also associated with significantly lower well-being, less activities and more social withdrawal. At first this latter finding appears to be contrary to one of the central principles of DCM – namely, that the assessment should be independent of dementia severity. Although high levels of well-being and engagement are possible for people with severe dementia, this probably requires higher staff numbers and a workforce with more specialized skills in order to achieve this.


2014 ◽  
Vol 7 ◽  
pp. HSI.S13283 ◽  
Author(s):  
Wadi B. Alonazi ◽  
Shane A. Thomas

The aim of this study was to explore the impact of quality of care (QoC) on patients’ quality of life (QoL). In a cross-sectional study, two domains of QoC and the World Health Organization Quality of Life-Bref questionnaire were combined to collect data from 1,059 pre-discharge patients in four accredited hospitals (ACCHs) and four non-accredited hospitals (NACCHs) in Saudi Arabia. Health and well-being are often restricted to the characterization of sensory qualities in certain settings such as unrestricted access to healthcare, effective treatment, and social welfare. The patients admitted to tertiary health care facilities are generally able to present themselves with a holistic approach as to how they experience the impact of health policy. The statistical results indicated that patients reported a very limited correlation between QoC and QoL in both settings. The model established a positive, but ultimately weak and insignificant, association between QoC (access and effective treatment) and QoL ( r = 0.349, P = 0.000; r = 0.161, P = 0.000, respectively). Even though the two settings are theoretically different in terms of being able to conceptualize, adopt, and implement QoC, the outcomes from both settings demonstrated insignificant relationships with QoL as the results were quite similar. Though modern medicine has substantially improved QoL around the world, this paper proposes that health accreditation has a very limited impact on improving QoL. This paper raises awareness of this topic with multiple healthcare professionals who are interested in correlating QoC and QoL. Hopefully, it will stimulate further research from other professional groups that have new and different perspectives. Addressing a transitional health care system that is in the process of endorsing accreditation, investigating the experience of tertiary cases, and analyzing deviated data may limit the generalization of this study. Global interest in applying public health policy underlines the impact of such process on patients’ outcomes. As QoC accreditation does not automatically produce improved QoL outcomes, the proposed study encourages further investigation of the value of health accreditation on personal and social well-being.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elgloria Harrison ◽  
Lillie Monroe-Lord ◽  
Andrew D. Carson ◽  
Anne Marie Jean-Baptiste ◽  
Janet Phoenix ◽  
...  

Abstract Background COVID-19 has taken its toll on citizens in all 50 states of the United States. The United States (U.S.) leads the world with 30,291,863 confirmed reported cases and 549,664 deaths as of March 29, 2021 compared to globally confirmed cases at 127,442,926 and 2,787,915 deaths as of March 29, 2021. The U.S. federal government primarily left the response to the virus to individual states, and each implemented varying measures designed to protect health of citizens and the state’s economic well-being. Unintended consequences of the virus and measures to stop its spread may include decreased physical activity and exercise, shifting access and consumption of food, and lower quality-of-life. Therefore, our primary goal was to quantify the impact of COVID-19 on health and well-being by measuring changes in physical activity, mental health-quality of life, food security and nutrition in adults ages 40 and older. We believed shifts in health behaviors would be more prevalent in minorities, less educated, lower socio-economic status, older adults, and those with underlying health conditions, so a secondary goal was to determine the impact of COVID-19 on these sub-populations. Methods We conducted an online survey with 9969 adults 40 years and older between 9 August and 15 September 2020 in urban areas across the four U.S. census regions. The survey included questions about demographic variables, pre-existing health conditions, physical activity, access to food, quality-of-life, and nutritional food status and asked participants to respond with information from pre-pandemic and pandemic conditions. We used paired-sample t-tests to detect changes in variables after the start of the pandemic and Cohen’s d to determine effect sizes. Results Our main findings showed a decrease in physical activity since the onset of COVID-19 for minorities and non-minorities. Food security also slightly increased for minorities during the pandemic, but we found no other changes in food security, quality-of-life indicators, or nutritional status of those who responded to this survey. Conclusions It is concerning that physical activity declined. Such activity helps maintain physical and mental health, and it is also an important time to socialize for many older adults. In many ways, our data indicate that the older adult population in U.S. cities may be more resilient than expected during the pandemic. However, the pandemic could have negative impacts that we did not detect, either due to the survey instrument or the timing of our survey, so the health and well-being of older adults should continue to be monitored in order to mitigate potential negative impacts.


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