scholarly journals Typologies of Dementia Caregiver Support Networks: A Pilot Study

2021 ◽  
Author(s):  
Esther M Friedman ◽  
David Kennedy
Keyword(s):  
Family Caregivers ◽  
Support Networks ◽  
Care Recipient ◽  
Support Network ◽  
Personal Network ◽  
Large Networks ◽  
Caregiver Support ◽  
Dementia Caregiver ◽  
Nationally Representative ◽  
The U.S

Abstract Background and Objectives There are nearly 18 million family caregivers in the U.S. assisting an older adult in need of help. To identify the caregivers in greatest need of support requires an understanding of the current social support networks available to family caregivers and whether specific groups of caregivers are at risk of having an insufficient support network. Research Design and Methods We collected personal network data from a nationally representative sample of 66 family caregivers to persons with dementia (PWD) in the U.S. age 18 and over, including information on network members’ support to the caregiver and help to the care recipient. Results We found four common caregiving network types: large networks with many helpers; large networks primarily supporting caregivers; small, dense networks supporting both caregivers and care recipient; and small networks providing little help to either caregiver or care recipient. Gender, income, and geographic proximity of caregiver to the care recipient were significantly associated with caregiver network type. Discussion and Implications This study suggests that there are different types of care and support networks available to caregivers to PWDs, and that the size and structure of networks vary considerable among demographic groups. As the population ages, a better understanding of the supports available to caregivers will be crucial for ensuring that caregivers are adequately supported, and caregiving needs of families are met.

scholarly journals Caregiving in the U.S. 2020: What Does the Latest Edition of This Survey Tell Us About Their Contributions and Needs?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Gabriela Prudencio ◽  
Heather Young
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Well Being ◽  
Basic Unit ◽  
Trend Data ◽  
Nationally Representative ◽  
Services And Supports ◽  
The Individual ◽  
National Profile ◽  
The U.S

Abstract Family and friends comprise the most basic unit of any society. For individuals who take on the responsibility of caring for another person through sickness or disability, it can often be challenging to see beyond the individual experience. Yet in the aggregate, family caregivers—whether they be families of kin or families of choice—are woven into the fabric of America’s health, social, economic, and long-term services and supports (LTSS) systems. As the country continues to age, the need to support caregivers as the cornerstone of society will only become more important. A national profile of family caregivers first emerged from the 1997 Caregiving in the U.S. study. Related studies were conducted in 2004, 2009, and 2015 by the NAC in collaboration with AARP. Caregiving in the U.S. 2020 presents a portrait of unpaid family caregivers today. A nationally representative survey (n=1,499), it replicates the methodology used in 2015. Therefore, during this symposium, AARP and NAC will present trend data from 2015 in comparison to 2020, and explore key subgroup differences. The presentation will cover prevalence, demographic characteristics, intensity and duration of care, the well-being of caregivers, the financial impact of family caregiving on caregivers themselves, and the degree to which technology supports caregivers today.

Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 4-4 ◽  
Author(s):  
Erin E. Kent ◽  
Margaret Longacre ◽  
Lisa Weber-Raley ◽  
C. Grace Whiting ◽  
Gail Hunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Panel Study ◽  
Healthcare Providers ◽  
Care Recipient ◽  
Life Care ◽  
Cancer Caregivers ◽  
Nationally Representative ◽  
The U.S

4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study

2020 ◽  
Vol 18 (5) ◽  
pp. 519-527
Author(s):  
Erin E. Kent ◽  
Michelle A. Mollica ◽  
J. Nicholas Dionne-Odom ◽  
Rebecca A. Ferrer ◽  
Roxanne E. Jensen ◽  
...  
Keyword(s):  
Supportive Care ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Care Recipient ◽  
Instrumental Support ◽  
Caregiver Distress ◽  
Sampling Weights ◽  
Serious Illness ◽  
Nationally Representative

AbstractBackground and ObjectiveA priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.MethodWe analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.ResultsOur analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3–63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.ConclusionsPoor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

2021 ◽  
Author(s):  
Jinhee Cha ◽  
Colleen M. Peterson ◽  
Ashley N Millenbah ◽  
Katie Louwagie ◽  
Zachary G Baker ◽  
...  
Keyword(s):  
Health System ◽  
Family Members ◽  
Extended Period ◽  
Care Recipient ◽  
Dementia Caregivers ◽  
Caregiver Support ◽  
Care Plans ◽  
Dementia Caregiver ◽  
Facilitators And Barriers ◽  
Additional Support

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

scholarly journals Professional discipline and support recommendations for family caregivers of persons with dementia

2016 ◽  
Vol 28 (6) ◽  
pp. 1029-1040 ◽  
Author(s):  
Joseph E. Gaugler ◽  
Bonnie L. Westra ◽  
Robert L. Kane
Keyword(s):  
Family Caregivers ◽  
Linear Models ◽  
Survey Design ◽  
Care Recipient ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Convenience Sample ◽  
Professional Discipline ◽  
Dementia Caregiver ◽  
Caregiver Interventions

ABSTRACTBackground:Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline.Methods:In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis.Results:General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy.Conclusions:The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.

The Experience of Alzheimer's Disease Family Caregivers in a Latino Community: Expectations and incongruences in support services

2021 ◽  
Author(s):  
Iveris L Martinez ◽  
Elaine Acosta Gonzalez ◽  
Caroline Quintero ◽  
Marsha Jenakovich Vania
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Service Providers ◽  
Social Systems ◽  
Support Network ◽  
Theory Approach ◽  
Caregiver Support ◽  
Provider Perspectives ◽  
Latino Caregivers

Abstract Objectives Current theoretical constructs on the utilization of formal support for Latino caregivers focus on familism and exclude the cultural values represented in the service system. The purpose of this paper is to highlight the experience of care for Latino family caregivers to persons with Alzheimer’s disease and related dementias (ADRD). We also examine the cultural congruence between provider perspectives with the expectations of Latino ADRD caregivers. Method We conducted extended interviews with 24 Latino ADRD caregivers and 10 service providers. Interview transcripts were coded and analyzed using a grounded theory approach. Results Our study provides a deeper understanding of Latino caregiving experiences and highlights some of the structural and systematic issues in current systems of caregiver support. While Latino families have very specific notions of care, by upholding notions of familism, there is a tendency to not look deeper into how they may be better supported in caregiving and fall into the “culture trap.” The assumption that family should be the natural support network for older adults may lead to health and social systems of care to ignore the specific needs of the Latino population. Discussion Services are being provided under a model that was established four decades ago and may not reflect current realities. The concept of “an ethics of care” allows us to move beyond familism and explain that underutilization of services may also be due in part to the cultural incongruence between what service providers offer and the perceived needs of Latino caregivers.

scholarly journals Family Caregivers as Advocates

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 64-64
Author(s):  
C Grace Whiting
Keyword(s):  
Family Caregivers ◽  
Multiple Roles ◽  
Care Recipient ◽  
Policy Action ◽  
Caregiver Support ◽  
The Public ◽  
Recent Developments ◽  
Life Circumstances ◽  
Caregiver Role ◽  
National Alliance

Abstract This presentation discusses the growing influence of family caregiver advocacy and its prospects for impacting policy under the Biden administration, at both the federal and states levels. In particular, it will describe the National Alliance for Caregiving’s 50-state unified strategy for establishing the caregiver support infrastructure that is needed to coordinate efforts and to support caregivers across the nation and the lifespan. Historically, family caregivers have had difficulty acting as effective advocates, given the multiple roles they often play and their widely divergent interests, based on the varying needs of their care recipient and their divergent life circumstances. However, the Biden administration has indicated receptivity to caregiver issues, and the public has become increasingly aware of the caregiver role (in part, due to the pandemic), resulting in improved prospects for policy action at both the state and federal levels. This presentation reviews recent developments and discusses strategies for moving forward.

scholarly journals Family Caregivers and Support: Implications for Work Strain and Formal Service Use

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 811-812
Author(s):  
Joseph Svec ◽  
Jeongeun Lee
Keyword(s):  
Family Caregivers ◽  
Process Model ◽  
Service Use ◽  
Care Recipient ◽  
Stress Process ◽  
Stress Process Model ◽  
Caregiver Support ◽  
Formal Service ◽  
Work Strain ◽  
Employed Caregivers

Abstract In the US, many employed caregivers make professional adjustments, exacerbating already tenuous balances between work and life. Using the framework of the Stress Process Model (SPM), current research examines the sources of support (both formal and informal) and the contextual factors that facilitate or impede caregiver support. In this research, we examine whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use. This study utilizes data provided by the National Study of Caregiving (NSOC) data. Using panel methods for the pooled waves, we analyze the associations between work-strain and the number of additional caregivers with utilization of formal support (such as paid service support). Preliminary analyses align with the Stress Process Model as additional caregivers for each respective care-recipient is associated with lower levels of work strain. On the other hand, utilization of formal services (paid help and Medicaid funding) is positively associated with work strain. These findings suggest that the number of additional caregivers can reduce the negative impact of caregiving on work related strain among employed caregivers. That is, multiple caregivers may be more reflective of cooperative arrangements which offset work disruptions that occur with the onset of caregiving. In addition, formal sources may more frequently be used as a last resort to address caregiver burnout. Ongoing analyses are examining changes in the number of caregivers and its impact on disruptive work event, which could lead to financial outcomes for caregivers.

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 Family Physician’s and Primary Care Team’s Perspectives on Supporting Family Caregivers in Primary Care Networks

2021 ◽  
Vol 18 (6) ◽  
pp. 3293
Author(s):  
Jasneet Parmar ◽  
Sharon Anderson ◽  
Marjan Abbasi ◽  
Saeed Ahmadinejad ◽  
Karenn Chan ◽  
...  
Keyword(s):  
Primary Care ◽  
Family Caregivers ◽  
Healthcare Providers ◽  
Family Physicians ◽  
Care Team ◽  
Primary Care Team ◽  
Caregiver Support ◽  
Team Members ◽  
Primary Care Teams ◽  
Support Family

Background. Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. Methods. We adopted an interpretive description design to explore family physicians and primary care team members’ perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. Results. Ten physicians and 42 team members participated. We identified three major themes. “Family physicians and primary care teams can be a valuable source of support for family caregivers” highlighted these primary care team members’ broad recognition of the need to support family caregiver’s health. “What stands in the way” spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, “A structured approach may be a way forward.” Conclusion. A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care.

Sign in / Sign up

Export Citation Format

Share Document