scholarly journals Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry (Preprint)

2020 ◽  
Author(s):  
Yan Du ◽  
Kristi Paiva ◽  
Adrian Cebula ◽  
Seon Kim ◽  
Katrina Lopez ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Diabetes Management ◽  
The United States ◽  
Qualitative Inquiry ◽  
Care Recipient ◽  
Online Forum ◽  
Care Recipients ◽  
Management Interventions

BACKGROUND Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. OBJECTIVE This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. METHODS User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. RESULTS Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. CONCLUSIONS The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

scholarly journals Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry

10.2196/17851 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e17851
Author(s):  
Yan Du ◽  
Kristi Paiva ◽  
Adrian Cebula ◽  
Seon Kim ◽  
Katrina Lopez ◽  
...  
Keyword(s):  
Alzheimer Disease ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Diabetes Management ◽  
The United States ◽  
Qualitative Inquiry ◽  
Care Recipient ◽  
Online Forum ◽  
Care Recipients ◽  
Management Interventions

Background Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective This study aims to explore diabetes-related topics in the Alzheimer’s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods User posts on the Alzheimer’s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher’s input as deemed necessary. Results Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.

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.

Diabetes management in Senegalese families: A dyadic-narrative illustration

2017 ◽  
Vol 14 (3) ◽  
pp. 182-193 ◽  
Author(s):  
R BeLue ◽  
K Ndiaye ◽  
PY Miranda ◽  
F Ndao ◽  
P Canagarajah
Keyword(s):  
Family Caregivers ◽  
Diabetes Prevention ◽  
Diabetes Management ◽  
Self Management ◽  
Healthy Behaviors ◽  
Management Interventions ◽  
Dietary Sugar ◽  
Sub Saharan ◽  
Family Based ◽  
Management Behaviors

Objectives In many Sub-Saharan African cultures, diabetes self-management behaviors such as dietary adherence do not occur in isolation but are carried out in the context of local culture, a significant factor in shaping those health behaviors. Methods Using a family-based narrative approach, we explore how Senegalese families manage diabetes. We interviewed twenty people living with diabetes and selected family caregivers from MBour, Senegal. Results We found that people living with diabetes experienced physical, emotional, and financial stressors as a result of managing their condition. In addition, family caregivers play an important role in managing their family member's diabetes. Discussion The act of caregiving affects caregiver diabetes prevention behaviors. In some cases, this caregiving role leads to an increase of healthy behaviors such as reducing dietary sugar; however, in some cases, caregivers do not see the need to engage in healthy behaviors. Diabetes prevention and management interventions that support both Senegalese people living with diabetes and their family caregivers are warranted.

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 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.

scholarly journals Barriers and Opportunities

2014 ◽  
Vol 41 (1) ◽  
pp. 86-94 ◽  
Author(s):  
Emily Ann Hallgren ◽  
Pearl Anna McElfish ◽  
Jellesen Rubon-Chutaro
Keyword(s):  
United States ◽  
Focus Groups ◽  
Health Beliefs ◽  
Access To Health Care ◽  
Diabetes Management ◽  
Transportation Cost ◽  
The United States ◽  
Self Management ◽  
Management Interventions ◽  
Management Behaviors

PurposeThis study investigates the beliefs and perceptions related to type 2 diabetes that influence diabetes self-management behaviors for Marshallese in the United States. Using the health belief model as a theoretical framework, the researchers seek to better understand the underlying beliefs that motivate or impede diabetes self-management behaviors.MethodsThe community-based participatory research (CBPR) collaborative engaged in 14 months of preliminary fieldwork and conducted 2 tiers of focus groups for this project as part of the long-term commitment to reducing health inequalities in the Marshallese community. The CBPR team conducted an initial round of 2 exploratory focus groups (n = 15). Based on the knowledge gained, researchers held a second round of focus groups (n = 13) on health beliefs regarding diabetes. All participants were Marshallese, aged 18 years and older, and included men and women. Participants either had a diagnosis of diabetes or were a caretaker of someone with diabetes.ResultsThe findings elucidate the structural and nonstructural barriers to successful diabetes self-management for Marshallese in the United States. Barriers include eating differently from the rest of the family, social stigma of diabetes, transportation, cost, lack of access to health care, and cultural and language barriers.ConclusionsWhile there are significant barriers to improving diabetes self-management, there are also areas of opportunity, including family and peer reinforcement to encourage proper diabetes management behaviors and a growing community desire to lift the stigma of diabetes. The CBPR team offers recommendations to make diabetes management interventions more culturally appropriate and effective for the Marshallese population.

scholarly journals Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

2019 ◽  
Vol 34 (6) ◽  
pp. 376-380
Author(s):  
Cory K. Chen ◽  
Nicole Nehrig ◽  
Karen S. Abraham ◽  
Binhuan Wang ◽  
Amy P. Palfrey ◽  
...  
Keyword(s):  
Social Support ◽  
Emotion Regulation ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Behavioral Intervention ◽  
Care Recipient ◽  
Care Recipients ◽  
Attachment Quality ◽  
Affective Instability ◽  
Symptom Remission

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.

scholarly journals (How) Will it end? A qualitative analysis of free-text survey data on informal care endings

2021 ◽  
Author(s):  
Emma Kirby ◽  
Giselle Newton ◽  
Lukas Hofstätter ◽  
Sarah Judd-Lam ◽  
Iva Strnadová ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Survey Data ◽  
Informal Care ◽  
Thematic Analysis ◽  
Care Recipient ◽  
Free Text ◽  
After Effects ◽  
Supported Accommodation ◽  
Care Recipients ◽  
Workforce Housing

The health and social ‘after-effects’ of caring are well established, yet the way carers experience pathways out of caring remains under-researched. In this article, we analyse qualitative free-text responses (n = 1,746) from a national survey of Australian carers to explore current and former carers’ concerns, opportunities and preferences around care endings. Our thematic analysis derived three key findings: (1) anticipation and fears for the care recipient; (2) prospects for life after caring; and (3) responsibility, recognition and loss. We engage with scholarship on the moralities of caring to discuss carers’ precarious relational and social positions, and their uncertainties around how caring ends.<br /><br />Key messages<br /><ul><li>Carers worry about how care recipients will be looked after in the future in the carer’s absence, especially in situations where the carer is frail or ageing.</li><br /><li>Carers also worry about their own futures and life after caring, including fears about re-entering the workforce, housing and superannuation, as well as issues of loss and loneliness.</li><br /><li>For some carers, the imagined care ending does not ultimately constitute the end of their caring responsibility in practice; for example, many carers continue to provide considerable care for those in supported accommodation.</li><br /><li>Understanding how carers experience and make sense of care endings is important for improving support for current and former carers.</li></ul>

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