A case of Wernicke encephalopathy in a dementia caregiver: The need for nutritional evaluation in family caregivers

Abstract Bringing people with dementia to in-person medical visits can be logistically challenging for family caregivers, especially when they themselves are older adults with their own health or mobility challenges, when they live far from the clinic, or when they have to combat inclement weather. Our dementia management clinic has successfully trialed video visits into the home. Video sessions have been welcomed by many dementia caregivers citing reduced travel and less disruption of daily routine as the primary benefits of participating. Caregivers report equivalent visit satisfaction compared to in-person visits. While technical issues have been common, most were just brief audio or video lags. Expansion of HIPAA compliant telemedicine software options across devices is increasing the population of caregivers who are able to participate in home video visits. (127 words)

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Aspects of Grit Among Dementia Family Caregivers

Innovation in Aging ◽

10.1093/geroni/igab046.029 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 8-8

Author(s):

Jyoti Savla ◽

Karen Roberto ◽

Jennifer Margrett

Keyword(s):

Family Caregivers ◽

Well Being ◽

Future Research ◽

Spiritual Support ◽

Dementia Caregivers ◽

Dementia Caregiver ◽

Caregiving Roles ◽

Caregiver Role ◽

The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

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Dying With Dementia: Caregiver Observations of Their Family Members’ Physical Decline and Behavioral or Psychological Changes During Their Last Days

OMEGA - Journal of Death and Dying ◽

10.1177/0030222820906684 ◽

2020 ◽

pp. 003022282090668

Author(s):

Cynthia A. Hovland ◽

Christopher A. Mallett

Keyword(s):

Family Caregivers ◽

Health Care Professionals ◽

Older Persons ◽

Qualitative Interviews ◽

Family Members ◽

Psychological Changes ◽

Physical Decline ◽

Dementia Caregiver ◽

Self Sufficiency ◽

Getting Lost

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers’ perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members’ last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

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P4-224: Assessing dementia caregiver burden in Chinese family caregivers in Singapore

Alzheimer s & Dementia ◽

10.1016/j.jalz.2006.05.1964 ◽

2006 ◽

Vol 2 ◽

pp. S582-S583

Author(s):

Lin Kiat Yap ◽

Yen Ni Goh ◽

Linda Mary Henderson

Keyword(s):

Family Caregivers ◽

Caregiver Burden ◽

Chinese Family ◽

Dementia Caregiver

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Characterizing dementia caregiver style in managing care challenges: Cognitive and behavioral components

Dementia ◽

10.1177/1471301220988233 ◽

2021 ◽

pp. 147130122098823

Author(s):

Amanda N Leggett ◽

Benjamin C Bugajski ◽

Laura N Gitlin ◽

Helen C Kales

Keyword(s):

Decision Making ◽

Family Caregivers ◽

Qualitative Methodology ◽

Management Strategies ◽

Management Styles ◽

Behavioral Management ◽

Chi Square ◽

Dementia Caregiver ◽

Sample Characteristics ◽

Data Reduction Technique

Background Caring for a person living with dementia can take a physical and emotional toll, but understudied is the process by which family caregivers actually provide care. Caregiver management styles may vary and affect care decision-making, experiences, receptivity to and participation in interventions, and outcomes for the caregiver and person living with dementia. Methods Participants included 100 primary family caregivers for persons with dementia who were on average 64 years old and had been providing care for 55 months, 74% women, and 18% nonwhite. Participants were interviewed in Michigan and Ohio regarding their cognitive and behavioral management of a recent care challenge and values guiding their decision-making. The rigorous and accelerated data reduction technique was used to analyze qualitative data leading to the identification of caregiving styles. Styles were compared across sample characteristics using chi-square and ANOVA tests. Findings Five distinct styles emerged: “Externalizers” (superficial understanding, self-focused, and frequent expressions of anger or frustration), “Individualists” (provide care by going alone, emotionally removed, and lack management strategies), “Learners” (recognize need to change their approach but are stuck and emotionally turbulent), “Nurturers” (positive affect and empathy toward care and reflect natural mastery), and “Adapters” (arsenal of acquired management strategies and adapt to challenges). Style groups differed significantly in terms of age and use of formal care supports. Discussion We identified five distinct styles by which caregivers addressed care challenges using a robust qualitative methodology. Styles may be important to identify in order to better tailor interventions to needs and abilities.

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Identifying Care-Related Needs of Family Caregivers of People With Dementia: Beyond the Stress Process Model

Innovation in Aging ◽

10.1093/geroni/igaa057.241 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 74-74

Author(s):

Sara Moss ◽

Lauren Gebhardt-Kram ◽

Holly Dabelko-Schoeny ◽

Jennifer Cheavens

Keyword(s):

Content Analysis ◽

Family Caregivers ◽

Process Model ◽

Psychological Needs ◽

Stress Process ◽

Stress Process Model ◽

Dementia Caregiver ◽

People With Dementia ◽

Widespread Agreement ◽

Caregiver Needs

Abstract The psychosocial stress process model (Pearlin et al., 1990) remains a dominant theoretical framework characterizing the transactions between factors affecting outcomes of informal caregivers of people with dementia (PWD). Despite widespread agreement that the model provides an important framework for understanding caregiver experiences and predicting caregiver outcomes, it is not sufficient to clarify the needs of caregivers. Needs are conceptualized as the skills and resources that could be used to ameliorate the negative impacts of caregiving and promote quality of life (Gitlin & Hodgson, 2015). Determining caregiver needs requires appreciation of the complex background, contextual, and stress-related variables described in the stress process model and requires empirically- and theoretically-driven understanding of the diverse resources, materials, and skills that individuals require for global health and functioning. In this study, we conducted a content analysis of existing measures of dementia caregiver needs (N = 54), content analysis of materials related to evidence-based dementia caregiver interventions and government reports and documents (N = 28), and semi-structured in-depth interviews with current caregivers of PWD (N = 12) to identify the personal and care-related needs of family caregivers of PWD. We propose a framework of five inter-related need categories (Health-related needs, environmental needs, psychological needs, social needs, and needs related to the care and functioning of the PWD) that transact with the factors described in the stress process model, ultimately influencing functioning. In the future, we plan to test this model empirically with a nationally representative sample of caregivers.

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Exploring interface design to support caregivers’ needs and feelings of trust in online content

Journal of Rehabilitation and Assistive Technologies Engineering ◽

10.1177/2055668320968482 ◽

2020 ◽

Vol 7 ◽

pp. 205566832096848

Author(s):

Thana Hussein ◽

Preet K Chauhan ◽

Nicole K Dalmer ◽

Frank Rudzicz ◽

Jennifer Boger

Keyword(s):

Family Caregivers ◽

Interface Design ◽

Design Research ◽

Web Design ◽

Online Information ◽

Exploratory Research ◽

Online Content ◽

Design Elements ◽

Dementia Caregiver ◽

Search Tool

Introduction Family caregivers of people living with dementia require a range of accurate, current, and reliable information throughout the care trajectory. Much of this information is available online, however it can be difficult for caregivers to identify and decide what content is relevant to them. Little is known about how online design cues impact family caregivers’ decision to assess how trustworthy information is and whether to engage with it. Methods Our exploratory research focused on the interface design of CARE-RATE, an online search tool intended to support more effective information searches for family caregivers seeking dementia care-related resources. Data from focus groups were coupled with design literature to inform the development of three mockups that were evaluated by seven dementia caregiver experts. Results Participants preferred a search bar design because of its simplicity, familiarity, and functionality. Design elements that impact trust included logos from reputable organizations, transparency of content author, and ratings from other caregivers. Conclusion Feelings of trust regarding information, including the ability to ascertain trustworthiness, is a major aspect of caregivers’ willingness to engage with online content. Transparency and familiarity appear to be key elements that impact caregivers’ trust in online information, which agrees with current web design research.

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Berlin Inventory of Caregiver Stress—Dementia (BICS-D)

The Gerontologist ◽

10.1093/geront/gnz195 ◽

2020 ◽

Author(s):

Anna Schlomann ◽

Claudia Schacke ◽

Bernhard Leipold ◽

Susanne Zank

Keyword(s):

Family Caregivers ◽

Reliability And Validity ◽

Sensitivity To Change ◽

Factor Analyses ◽

Differential Measurement ◽

Dementia Caregiver ◽

Stress Study ◽

Severity Of Dementia ◽

Design And Methods ◽

Degrees Of Severity

Abstract Background and Objectives Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. “The Berlin Inventory of Caregiver Stress—Dementia” (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER). Research Design and Methods The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers. Results Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach’s α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia. Discussion and Implications The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study’s objectives.

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

International Psychogeriatrics ◽

10.1017/s1041610215002318 ◽

2016 ◽

Vol 28 (6) ◽

pp. 1029-1040 ◽

Cited By ~ 10

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.

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