The Work Caregivers Do

2020 ◽  
pp. 19-37
Author(s):  
Sherry N. Mong
Keyword(s):  
Family Caregivers ◽  
Wound Care ◽  
Medication Administration ◽  
Care Recipient ◽  
Positive Pressure ◽  
Medical Procedures ◽  
Nasogastric Tubes ◽  
Routine Basis ◽  
Gastrostomy Tubes ◽  
Anxiety And Fear

This chapter discusses the type of work caregivers do. Among the medical procedures that caregivers do that are mentioned in the chapter are: intravenous therapies (IVs), total parenteral nutrition (TPN), gastrostomy tubes (G-tubes) and nasogastric tubes (NG-tubes), urinary catheters, external catheters, intermittent catheters, wound care, ostomy, bowel management programs, respiratory procedures, tracheostomy, and positive-pressure ventilators. The chapter discusses caregiver insights and the dilemmas they face in having to provide skilled care. In general, many of the medical procedures are not only difficult to master but also cause trepidation because of the possible complications that can result if the caregiver makes a mistake. Several caregivers who gave IVs said they worried about contaminating the IV site or shooting air in the line. In hospitals, problems with medication administration are a leading cause of death, and so are infections that occur when a wound is not correctly dressed or an IV carefully accessed. Yet family caregivers are asked to do these activities on a routine basis — over a period of months or even years. The worry about complications is well founded, as they can have deleterious consequences. Coupled with issues of anxiety and fear of causing harm to the care recipient are issues of manual dexterity and “getting the feel” of the procedures. Not only do caregivers have to overcome fear, get the feel of procedures, and make sure they are done correctly, but they also have to get past the personal discomfort they may have regarding the intimate nature of the work they are asked to do.

Predicting perceived medication-related hassles in dementia family caregivers

Dementia ◽  
2015 ◽  
Vol 16 (6) ◽  
pp. 797-810 ◽  
Author(s):  
Nika R George ◽  
Ann M Steffen
Keyword(s):  
Family Caregivers ◽  
Depressive Symptomatology ◽  
Medication Management ◽  
Medication Administration ◽  
Self Report ◽  
Care Recipient ◽  
Cognitively Impaired ◽  
Prescription Medications ◽  
Regression Analyses ◽  
Independent Variables

Objective This study examined predictors of medication administration hassles reported by intergenerational dementia family caregivers. Methods A sample of 53 women who aided a cognitively impaired older adult with healthcare and who identified as inter-generational caregivers provided self-report medication management and psychosocial data. Results Hierarchical multiple regression analyses revealed that six independent variables hypothesized for this model, the total number of prescription medications managed by caregivers, educational attainment, care-recipient functional impairment, care-recipient cognitive impairment, caregiver depressive symptomatology, and self-reported feelings of preparedness for the caregiving role together significantly predicted caregiver medication administration hassles scores F(1, 48) = 4.90, p = .032, and accounted for approximately 25% of the variance of self-reported hassles (adjusted R2 = .247). Discussion Future interventions may reduce medication-related hassles by providing psychoeducation about healthcare, medication management, and strategies for coping with care-related stressors and depressed mood.

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

scholarly journals Positive Aspects of Caregiving Among Family Caregivers of Individuals With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 358-359
Author(s):  
Mary Grace Asirot ◽  
Anna Papazyan ◽  
Yeonsu Song
Keyword(s):  
Mental Health ◽  
Sleep Quality ◽  
Family Caregivers ◽  
Care Recipient ◽  
Related Factors ◽  
Negative Experience ◽  
Care Recipients ◽  
Positive Aspects Of Caregiving ◽  
Positive Caregiving ◽  
And Behavior

Abstract Traditionally, caregiving for individuals with dementia has been viewed as a negative experience. Understanding positive aspect of caregiving and related factors is important to improve health among family caregivers. We analyzed baseline data from an ongoing dyadic sleep education trial for individuals with dementia and their caregivers (N=21 dyads; mean age 70.8± 11.1 for caregivers, 80.5± 8.3 for care-recipients). The Positive Aspects of Caregiving (PAC 9-item) was used to assess subjective satisfaction with caregiving. Other measures included Zarit Burden Interview (ZBI), SF-12 Health Survey (SF-12v2), Revised Memory and Behavior Problems Checklist (RMBPC), and Pittsburgh Sleep Quality Index (PSQI). Pearson correlations and t-tests were calculated for analyses. Caregivers most frequently endorsed that caregiving enabled them to appreciate life more (n=16 agreed a lot). Caregivers who began providing care within the first few months of the care-recipient needing care (n=16) had greater positive aspects of caregiving than those who started providing care sometime later (n=5) (36.37±7.33 versus 25.8±8.29, p=0.01). Caregivers with higher PAC scores had lower ZBI score (r=-0.49, p=0.02), better mental health on the SF-12v2 (r=0.53, p=0.01), less distress related to care-recipient behaviors on the RMBPC (r=-0.50, p=0.02), and lower PSQI subscale (perceived sleep quality) score (r= -0.46, p=0.04). Findings suggest that higher positive caregiving experience was associated with better mental health and sleep quality, and less burden and distress from the care-recipients behaviors. More research is needed to better understand this relationship and to determine possible interventions to increase positive aspects of caregiving.

scholarly journals 514. Shedding of Multidrug-Resistant Gram-Negative Bacilli by Colonized Patients during Procedures and Patient Care Activities

2019 ◽  
Vol 6 (Supplement_2) ◽  
pp. S248-S248
Author(s):  
Heba Alhmidi ◽  
Jennifer Cadnum ◽  
Annette Jencson ◽  
Robert A Bonomo ◽  
Brigid Wilson ◽  
...  
Keyword(s):  
Patient Care ◽  
Wound Care ◽  
Multidrug Resistant ◽  
Negative Control ◽  
Hospitalized Patients ◽  
Portable Devices ◽  
Medical Procedures ◽  
Portable Equipment ◽  
Gram Negative ◽  
Contact Precautions

Abstract Background Contaminated environmental surfaces contribute to transmission of healthcare-associated pathogens such as multidrug-resistant gram-negative bacilli. We hypothesized that medical procedures and patient care activities facilitate environmental dissemination of multidrug-resistant gram-negative bacilli in hospitalized patients. Methods We conducted a cohort study of hospitalized patients in contact precautions for carriage of extended-spectrum β-lactamase (ESBL)-producing or carbapenem-resistant gram-negative bacilli (CR-GNB) to determine the frequency of environmental shedding during procedures and care activities. Perirectal, wound, and skin were cultured for the gram-negative bacilli of interest. Prior to each procedure or activity, surfaces in the room and portable equipment used for procedures were disinfected. After procedures, high-touch surfaces and portable equipment were cultured; negative control cultures were collected after 1 hour in the absence of a procedure. Results Of 60 participants, 38 (63%) were in contact precautions for ESBL-producing gram-negative bacilli and 22 (37%) for CR-GNB. Thirty-four (57%) participants had positive perirectal, wound, or skin cultures. Contamination of surfaces with the colonizing multidrug-resistant gram-negative bacilli occurred frequently during procedures and activities such as wound care, assistance with meals, and urinary catheter or colostomy care (11% to 29% of procedures/activities), whereas contamination was rare in the absence of a procedure (1%). Contamination was recovered from 6 of 56 (10%) portable devices used for procedures. Conclusion Environmental shedding of multidrug-resistant gram-negative bacilli occurs frequently during medical and non-medical procedures in hospitalized patients. Our results suggest that there is a need for effective strategies to disinfect surfaces and equipment after procedures. Disclosures All authors: No reported disclosures.

scholarly journals WHAT FAMILY CAREGIVERS THINK AND FEEL WHEN PROXY ASSESSING FROM DIFFERENT PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S977-S977 ◽  
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Emotional Experience ◽  
Assessment Process ◽  
Care Recipient ◽  
Care Recipients ◽  
Self Assessments ◽  
Affective Experiences ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipient quality of life (QOL). Proxy assessment is not ideal because proxy assessments differ systematically from self-assessments and the assessment process can elicit negative affect from family caregivers. Prompting adoption of the care recipient’s perspective can enhance assessment congruence and may improve the emotional experience for assessors. This study explored family caregivers’ cognitive and affective experiences during QOL proxy assessments made from both their own and care recipients’ perspectives. Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version using standard instructions to assess QOL across thirteen domains of their care recipient’s life without specifying the perspective to be used. Subjects were next asked to repeat the QOL-AD with instructions to adopt the perspective of their care recipient, as they imagined it to be. Subjects were then interviewed about what they thought and felt during each proxy assessment experience. Content analysis indicated that spontaneous perspective shifts and response shifts frequently occurred. Most subjects (91.7%) reported changed thinking for one or more QOL-AD domains when they were prompted to switch perspectives. Over half (61.12%) reported changed affect when switching perspectives and 90.9% of those experiencing changed affect reported affective improvement. Little or no affective change was reported by 38.89%. Findings suggest awareness of perspective can enhance clinical interpretation of proxy assessed QOL and can inform clinical response to dementia family caregivers who experience negative emotions while proxy reporting QOL.

scholarly journals Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1712-1731 ◽  
Author(s):  
Jill-Marit Moholt ◽  
Oddgeir Friborg ◽  
Bodil H Blix ◽  
Nils Henriksen
Keyword(s):  
Family Caregivers ◽  
Urban Areas ◽  
Healthcare Services ◽  
Respite Care ◽  
Care Recipient ◽  
Full Time ◽  
Northern Norway ◽  
Care Services ◽  
Home Based ◽  
The Family

BackgroundFamily caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers.MethodA cross-sectional survey was administered to family caregivers ( n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services ( R2= 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses.ResultsThe use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time.ConclusionsThese results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

scholarly journals DO INTRA-PROXY GAPS EMERGE WHEN FAMILY CAREGIVERS ASSESS QOL FROM DIFFERENT PERSPECTIVES?

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S979-S979
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Care Recipient ◽  
Personal Factors ◽  
Care Recipients ◽  
The Family ◽  
Health Factors ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipients’ quality of life (QOL). This study explored whether prompts to change perspective during QOL assessment could elicit an intra-proxy gap. The intra-proxy gap was hypothesized to be any difference between those assessments made from the caregiver’s own perspective and those made from the adopted perspective of the care recipient, as the care giver imagined it to be (Pickard and Knight, 2005). Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version under two conditions: First, from an unprompted perspective and second, from the adopted perspective of the care recipient, as the family caregiver imagined it to be. T-testing indicated intra-proxy gaps emerged for eleven of the QOL-AD’s thirteen domains. For these domains, QOL scores were higher when assessed from the care recipient’s perspective, as the family caregiver imagined it to be. The sample was then repeatedly bisected using caregivers’ personal, relational, and health factors. T-testing indicated that family caregivers’ personal factors were associated with intra-proxy gaps across more QOL-AD domains than their relational or health factors were. Three personal factors, being of older age, having more empathetic concern, and having more empathetic distress, were associated with intra-proxy gaps more frequently than other personal factors were. Findings suggest that clinicians should be alert for perspective employed by proxy assessors and for the possibility of intra-proxy gaps. Recognition of these gaps could help improve interpretation of QOL scores.

Potentially preventable hospitalizations in dementia: family caregiver experiences

2017 ◽  
Vol 29 (7) ◽  
pp. 1201-1211 ◽  
Author(s):  
Tatiana Sadak ◽  
Susan Foster Zdon ◽  
Emily Ishado ◽  
Oleg Zaslavsky ◽  
Soo Borson
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Care Recipient ◽  
Preventable Hospitalizations ◽  
Health Crisis ◽  
Care Recipients ◽  
People With Dementia ◽  
Mitigating Factors ◽  
Health Event ◽  
Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

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