Managing the Impact of Advanced Complex Illness on Family Caregiver and Professional Caregiver Stress

2017 ◽  
pp. 223-235
Author(s):  
Gregory R. Harper ◽  
Bridget Blitz ◽  
Catherine Serena ◽  
Donna Stevens ◽  
Daniel E. Ray
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.


Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1479-1491 ◽  
Author(s):  
Katie Appleton ◽  
Antonina Pereira

Aim The present study aimed to explore the impact that changes in behavioural symptoms of people living with dementia have on professional caregiver and resident relationships. Method A total of 21 interviews were carried out with professional caregivers of people living with dementia. A grounded theory approach was used to investigate everyday experiences of provision of professional care in dementia settings, focussing specifically on the effect of behavioural change on such relationships. Results A core category emerged from this analysis: ‘Developing behaviour in dementia impacts relationships on a personal and professional level’. Discussion Professionals have recognized as part of their everyday practice an eventual deterioration in relationships between themselves as professional caregivers and the residents, but also between the residents and their family members and among residents themselves. Importantly, understanding patients’ behaviour and behavioural change was identified as a crucial factor to achieve and sustain good relationships between professionals and residents suffering with dementia.


2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.


2005 ◽  
Vol 17 (2) ◽  
pp. 253-263 ◽  
Author(s):  
Lay Ling Tan ◽  
Hwee Bee Wong ◽  
Harry Allen

Background: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers.Method: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the “occupational disruptiveness” of behaviors in the nursing home version (NPI-NH).Results: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group.Conclusions: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.


2009 ◽  
Vol 29 (3) ◽  
pp. 267-289 ◽  
Author(s):  
R. Colin Reid ◽  
Kelli I. Stajduhar ◽  
Neena L. Chappell
Keyword(s):  

2019 ◽  
Vol 4 (1) ◽  
pp. 41-47
Author(s):  
Farida Abdulqadir Tahir

Family Care giving for relatives with Alzheimer, often includes assisting them with one or more activities of daily living, as Alzheimer is one of the progressive impairment diseases in patient’s physical and cognitive ability. The aim of this study is to assess the effect of being a family caregiver of Alzheimer patients in Sulaimani city. A cross-sectional quantitative study carried out among family members who care for older patients with Alzheimer’s disease. The instrument was designed and constructed by the researcher through an intensive review of the literature and also through a series of meeting survey with caregivers in order to measure the variables underlying the present study. The data were obtained by the researcher, who interviewed families, structured questionnaire forms filled out with a total of 100 families. These were taken using a random sample of those families have Alzheimer’s problem in Sulaimani city. The majority of participants were women with a mean age 53.75 years old, married, housewives and with university education. More than half of the Caregiver was suffered from moderate to severe burdens.  Rotated Component Matrix was used to get the level of effectiveness by a series of components according to the important effects of the variables on Alzheimer disease. The researcher found that the financial burden has taken the first order, followed by psychological and then a social burden. The finding of the study shows a significant relationship between some demographic characteristics and the three dimensions of the burden. It appears that financial factor is in the first rank by a total variance (85.151), then psychological factors by a total variance (81.532) then the social factor by total variance (65.851). Financial factor was the strongest factor that impacted their family income. Some psychosocial oriented services are recommended for the caregivers in order to decrease the stress and help them to adapt to the situation. Some educational programs are also required to facilitate providing enhanced physical and psychological care. This study also recommends allocating salary for every patient to ease the financial burden on the caregivers


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