Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

2021 ◽  
pp. 1-16
Author(s):  
Daniella Rangira ◽  
Hiba Najeeb ◽  
Samantha E. Shune ◽  
Ashwini Namasivayam-MacDonald
Keyword(s):  
Older Adults ◽  
Caregiver Burden ◽  
Social Life ◽  
English Language ◽  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Meta Analyses ◽  
The Impact

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

scholarly journals EMERGING ADULT CAREGIVERS: PERCEPTIONS OF OLDER ADULT CARE RECIPIENTS, QUALITY OF CONTACT, AND AGEISM

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S952-S952
Author(s):  
Anastasia E Canell ◽  
Grace Caskie
Keyword(s):  
Older Adults ◽  
Older Adult ◽  
Social Role ◽  
Emerging Adult ◽  
Care Recipient ◽  
Adult Care ◽  
Care Recipients ◽  
Adult Caregivers ◽  
Quality Of Contact

Abstract Approximately 12-18% of family caregivers to older adults in the U.S. are 18-25 years old (i.e., emerging adulthood), yet minimal research has focused on this subgroup of caregivers (Levine, 2005; Smyth, Blaxland, & Cass, 2011). Individuals’ perceptions of an older adult’s social role relate to their attitudes toward older adults as a group (Hummert, 1999; Kite & Wagner, 2002). However, whether perceptions that emerging adult caregivers hold of older adults are specific to the social role of “care-recipient” has not been studied. A sample of 210 informal caregivers (ages 18-25) were surveyed to collect qualitative responses regarding perceptions of an older adult care-recipient (age 65+) and to assess quality of contact with the care-recipient and ageist attitudes. Participants were asked to provide five adjectives describing their older adult care-recipient. Approximately 43% provided a set of adjectives in which 80%-100% were coded as positive adjectives (e.g., “active”, “wise”); similarly, half of the sample’s adjective sets contained 0%-25% negative adjectives (e.g., “helpless”, “obnoxious”). The quality of contact with the care-recipient was significantly correlated (p<.001) with the percentage of positive (r=.47) and negative (r=-.49) adjectives. Scores on the Fraboni Scale of Ageism were also significantly correlated (p<.01) with the percentage of positive (r=-.19) and negative (r=.20) adjectives. Overall, these emerging adult caregivers had generally positive perceptions of their older adult care-recipients, and these perceptions reflected the positive quality of contact with the care-recipient. Less ageist attitudes’ relationship with more positive and less negative perceptions may have implications for experiences within a caregiving dyad.

scholarly journals Home Care Resiliency during the COVID-19 Pandemic: Older Adult-Home Care Aide Dyads’ Perspectives

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 721-721
Author(s):  
Naoko Muramatsu ◽  
Lijuan Yin ◽  
Maria Caceres ◽  
Jordan Skowronski
Keyword(s):  
Older Adults ◽  
Home Care ◽  
Healthcare Providers ◽  
Community Dwelling ◽  
Care Recipient ◽  
Work Related ◽  
Care Recipients ◽  
Acute And Chronic Stress ◽  
Home Based ◽  
Related Stress

Abstract Homecare has increased its value as an alternative to nursing homes and adapted to evolving COVID-19 challenges. However, little is known about how COVID-19 has impacted community-dwelling older adults who need assistance with daily activities, including dressing, cooking, and shopping. Guided by the stress process framework, this mixed-method study examined how older homecare recipients experienced the acute and chronic stress during the first eight months of the pandemic, focusing on the role of home care aides (HCAs) in the context of Medicaid-funded in-home services. Thirty-five dyads of care recipients and HCAs participated in a COVID telephone survey as part of a larger study. Care recipients were typically older minority (40% African American, 31% Latinx) women (77%). Their COVID-related anxiety level, assessed by a 6-item Spielberger State Anxiety Inventory (1 “not at all” to 4 “very much”), was 2.2 (SD=0.9). While COVID-19 drastically reduced contacts with family members and healthcare providers, HCAs continued to provide care in person. One care recipient said, “Fortunately, I still have my HCA come and that keeps me sane.” HCAs showed resilience while facing their own family- and work-related stress: “I have followed the rules and just adapted. (COVID) did not affect the activities for my client.” Some dyads, however, experienced care disruptions because of COVID infection or fear in one or both parties. COVID-19 has demonstrated homecare resilience at the person-, dyad-, and organization-levels, calling for equitable, sustainable home-based care for a growing number of older adults who desire to stay in the home.

The impact of care recipient falls on caregivers

2013 ◽  
Vol 37 (2) ◽  
pp. 152 ◽  
Author(s):  
Briony Dow ◽  
Claudia Meyer ◽  
Kirsten J Moore ◽  
Keith D. Hill
Keyword(s):  
Older People ◽  
Service Use ◽  
Community Dwelling ◽  
Falls Prevention ◽  
Care Recipient ◽  
Significant Problem ◽  
Zarit Burden Interview ◽  
Care Recipients ◽  
Interview Score ◽  
The Impact

Objective. This study sought to explore the impact of care recipient falls on caregivers. Methods. Ninety-six community-dwelling caregiver−care recipient dyads participated in a 12-month prospective study. Falls and other accidents and service use were recorded. Dyads were assessed at baseline and after each fall. Assessment included the Zarit Burden Interview and a post-accident survey developed for the present study. Focus groups were then conducted to further explore the impact of falls on caregivers. Results. Fifty-four care recipients (56%) experienced falls within the 12 months of the study. There was a significant increase in caregiver burden after the first fall (Zarit Burden Interview score increased from 24.2 ± 14.2 to 27.6 ± 14.5, P < 0.01). Twenty-four percent of caregivers reported that they had altered their usual routine after the fall, mainly not wanting to leave the care recipient alone. However, there was no increase in the number of services used. Focus group discussions highlighted the need for constant vigilance of the care recipient, a lack of knowledge about support services and concerns related to utilising respite care. Conclusion. Falls among care recipients have a significant impact on carers, including an increased fear of falling, prompting the need for even closer vigilance. What is known about the topic? Falls are a significant problem for older people as one in three older people fall each year and injurious falls are the leading cause of injury-related hospitalisation in older people. In Australia falls cost the economy over $500 million per year. What does this paper add? This paper adds a unique perspective to the falls literature, that of the older person’s carer. Falls are a significant problem for community-dwelling carers of older people, contributing to carer burden and impeding the carer’s ability to undertake activities of daily living because of the perceived need for constant vigilance to prevent the person they care for from falling. What are the implications for practitioners? Practitioners should ensure that carers are aware of evidence-based falls-prevention practices and services, such as group and individual exercise programs, home modifications and podiatry, that might assist to prevent falls in the person they care for and therefore reduce the burden of care.

Caregiver burden among adults caring for their Holocaust-survivor parents during the COVID-19 pandemic

2021 ◽  
pp. 1-6
Author(s):  
Ruth Maytles ◽  
Maya Frenkel-Yosef ◽  
Amit Shrira
Keyword(s):  
Caregiver Burden ◽  
Stress Disorder ◽  
Care Recipient ◽  
Holocaust Survivor ◽  
Ptsd Symptoms ◽  
Adult Care ◽  
Social Burden ◽  
Care Recipients ◽  
Physical Burden ◽  
The Holocaust

Abstract This study aimed to examine the caregiver burden among offspring of Holocaust survivors (OHS) caring for their parents during the COVID-19 pandemic, hypothesizing that caregivers whose parents suffer from posttraumatic stress disorder (PTSD) would report an increased burden. The sample consisted of 109 caregivers with older adult care recipient parents (average caregivers’ age = 57.67, SD = 8.49). Caregivers were divided into three groups: 20 OHS who reported that at least one care recipient had PTSD, 60 OHS who reported that their care recipients did not have PTSD, and 29 comparison caregivers (whose care recipients did not undergo the Holocaust). Caregivers completed questionnaires about SARS-CoV-2 exposure, COVID-19 concerns, helping their care recipients, their experiences of caregiver burden, and perceived changes to their caregiver burden during the pandemic. The caregivers also reported PTSD symptoms—in themselves as well as in their care recipients. Relative to comparisons, OHS with parental PTSD reported higher caregiver burden in four aspects: time-dependent burden, developmental burden, physical burden, and social burden. Furthermore, OHS reported a greater perceived increase in caregiver burden during the pandemic than the comparisons. The study findings illuminate the difficulties OHS caregivers, especially those whose care recipients have PTSD, face during the COVID-19 pandemic. This group of caregivers is at risk of experiencing more distress and may need help and support. Further research is needed to determine whether people taking care of their posttraumatic parents following other massive traumatic events also feel a heavier caregiver burden—both in general and specifically during the current pandemic.

scholarly journals Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 154-155
Author(s):  
Melissa Harris ◽  
Marita Titler
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Community Services ◽  
Community Dwelling ◽  
Care Recipient ◽  
Future Research ◽  
Service Access ◽  
Psychological Responses ◽  
People With Dementia ◽  
The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

scholarly journals VOICE FIRST TECHNOLOGY: SIMPLIFYING LIFE FOR COMMUNITY-DWELLING OLDER ADULTS LIVING WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S390-S390
Author(s):  
Debra J Sheets ◽  
Marilyn Malone ◽  
Stuart W MacDonald ◽  
Carl Asche ◽  
Andre Smith
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Caregiver Burden ◽  
Low Cost ◽  
Community Dwelling ◽  
Care Partners ◽  
The Impact ◽  
Community Dwelling Older Adults ◽  
Purposive Sample

Abstract Voice first technology offers older adults with dementia support that may maintain independence, reduce social isolation and improve quality of life (QoL). This study investigates the impact of a voice-controlled technology customized to the needs of participants living with dementia and their caregivers. A mixed methods design focused on psychosocial factors and usability characteristics. The purposive sample consisted of older adults with dementia (n=12) and their care partners (n=12)) living independently in the community. Validated measures for cognition, depression, caregiver burden, quality of life and usability were included. Qualitative in-home interviews were conducted to assess impact on social connections and independence. Results indicate that voice first technology can reduce caregiver burden and can support the independence and QoL of older adults with dementia. The discussion considers the value of low cost voice first technology as a way to support older adults with dementia and their caregivers.

scholarly journals Do State and Trait Measures Measure States and Traits? The Case of Community-Dwelling Caregivers of Older Adults

Assessment ◽  
2019 ◽  
pp. 107319111988858
Author(s):  
Charles E. Lance ◽  
Juliette Christie ◽  
Gail M. Williamson
Keyword(s):  
Community Dwelling ◽  
Care Recipient ◽  
Adult Care ◽  
Psychological Constructs ◽  
Latent Constructs ◽  
Care Recipients ◽  
Communal Behavior ◽  
State And Trait Anxiety ◽  
Respective State

Spielberger’s state and trait anxiety and anger scales are widely used and documented, but there is little or no direct evidence that they actually measure their respective state and trait aspects as was intended. We conducted latent state-trait analyses on data collected from 310 community-dwelling caregivers of older adult care recipients and found that (a) both state and trait scales reflected a mixture of state and trait aspects of their latent constructs, (b) state scales reflected more state-like variance than did corresponding trait scales, but (c) both state and trait scales were dominated by stable trait-like variance. Follow-up bivariate latent state-trait analyses indicated that correlations between trait components of anger and anxiety correlated more strongly with trait components of caregiver–care recipient mutually communal behavior and care recipient problem behavior than did state–state component correlations. Implications for the measurement of state and trait components of psychological constructs are discussed.

scholarly journals Food Access, Diet Quality, and Nutritional Status of Older Adults During COVID-19: A Scoping Review

2021 ◽  
Vol 9 ◽  
Author(s):  
Emily J. Nicklett ◽  
Kimson E. Johnson ◽  
Lisa M. Troy ◽  
Maitreyi Vartak ◽  
Ann Reiter
Keyword(s):  
Older Adults ◽  
Rural Communities ◽  
Nutritional Status ◽  
Older Adult ◽  
Diet Quality ◽  
Food Access ◽  
English Language ◽  
Final Analysis ◽  
Community Dwelling ◽  
The Impact

Background: COVID-19 has imposed challenges for older adults to access food, particularly in minority, lower income, and rural communities. However, the impact of COVID-19 on food access, diet quality, and nutrition of diverse older adult populations has not been systematically assessed.Objective: To examine changes in food access, diet quality, and nutritional status among older adults during the COVID-19 pandemic and the potential differential impacts of the COVID-19 pandemic on these nutrition-related outcomes using the framework of the socio-ecological model.Methods: An electronic search was conducted on 3 databases (PubMed, CINAHL, and Web of Science) on March 7, 2021. Original, peer-reviewed English-language studies published 10/1/2019–3/1/2021 were considered for which the mean age of participants was 50 years and older. In order to be considered, studies must have examined food access, food security, or nutrition constructs as an outcome.Results: The initial search yielded 13,628 results, of which 9,145 were duplicates. Of the remaining 4,483 articles, 13 articles were in scope and therefore selected in the final analysis, which can be characterized as descriptive (n = 5), analytical (n = 6), and correlational (n = 2). Studies were conducted among community-dwelling older adult populations (n = 7) as well as those temporarily residing in hospital settings (n = 6) in 10 countries. None of the in-scope studies examined the impact of food programs or specific public policies or disaggregated data by race/ethnicity.Conclusions: More research is needed to examine the impact of COVID-19 on food access/security and the differential barriers experienced by older adult populations.

scholarly journals Impact of COVID-19 on Older Adults: A Rapid Review (Preprint)

2020 ◽  
Author(s):  
Audrey Lebrasseur ◽  
Noémie Fortin-Bédard ◽  
Josiane Lettre ◽  
Emilie Raymond ◽  
Eve-Line Bussières ◽  
...  
Keyword(s):  
Older Adults ◽  
Social Life ◽  
Sleep Disturbances ◽  
Psychological Symptoms ◽  
Rapid Review ◽  
Personal Factors ◽  
Protective Measures ◽  
Institutional Strategies ◽  
Meta Analyses ◽  
The Impact

BACKGROUND The COVID-19 pandemic has caused drastic changes in the lives of the general population. Older adults are known to experience loneliness, age discrimination, and excessive worrying. It was therefore apprehended that they would experience greater negative outcomes related to the COVID-19 pandemic given their increased isolation and risks of complications. OBJECTIVE This paper aims to synthesize the existing research regarding the impact of the COVID-19 pandemic, and associated isolation and protective measures, on older adults. METHODS A rapid review of the published literature was conducted on October 6, 2020, through a search in six online databases to synthesize results from published original studies regarding the impact of the COVID-19 pandemic on older adults. The Human Development Model conceptual framework – Disability Creation Process (HDM-DCP) was used to describe and understand interactions between personal factors, environmental factors, and life habits. Methods and results are reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement. RESULTS 116 records were included from the initial search strategy of 9,593 individual papers. Ninety-six of 116 studies were determined to be level 4 according to the CEBM levels of evidence. The presence of psychological symptoms, the exacerbation of ageism, and the physical deterioration of aged populations have been noted. Decreased social life and fewer in-person social interactions reported during the pandemic were occasionally associated with reduced quality of life and increased depression. Difficulties accessing services, sleep disturbances and a reduction of physical activity were also noted. CONCLUSIONS Our results highlight the need for adequate isolation and protective measures. Older adults represent a heterogeneous group, which could explain the contradictory results found in the literature. Individual, organizational and institutional strategies should be put in place to assure that older adults are able to maintain social contacts, preserve family ties, and maintain the ability to give or receive help during this pandemic. Future studies should focus on specific consequences and needs of more at-risk older adults to ensure their inclusion, both in public health recommendations and consideration by policy makers. CLINICALTRIAL PROSPERO ID: CRD42020201814

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