O2‐08‐04: Support, health, activities, resources, and education: The evidence‐based share program for persons with early‐stage dementia and their family caregivers

Whitlatch, Carol J.; Femia, Elia E.; Szabo, Sarah M; Orsulic‐Jeras, Silvia; Zarit, Steven H.; Heid, Allison R.

doi:10.1016/j.jalz.2015.07.174

Cited by 9 publications

(9 citation statements)

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“…Many of our participants described a trajectory after diagnosis marked by disappointing partnerships with health professionals, such as a feeling that they had been left with the diagnostic label without sufficient information or support. Lack of information, particularly during early stages of disease, echoes previous findings in neurodegenerative disorders (Dennison et al, 2011;Whitlatch & Orsulic-Jeras, 2018). The notion of a "timely diagnosis" in the Australian context (Watson et al, 2018) embraces the ideal that individuals with dementia or any chronic disease should have information provided to support decision-making as soon as they express the willingness to receive the information.…”

Section: Discussionmentioning

confidence: 87%

The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study

Bricker-Katz

Ballard

et al. 2022

Dementia

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Objectives Receiving a diagnosis of neurodegenerative disorder is life changing. Primary progressive aphasia is one such disease. Understanding how receiving this diagnosis impacts on individuals may help plan support services. However, limited qualitative research from the perspectives of people with Primary Progressive Aphasia are available for suitable care planning. Current literature primarily focuses on experiences of family members. The present study aims to fill this gap by examining the affective, behavioural, and cognitive experiences of people with Primary Progressive Aphasia. Methods Semi-structured interviews were conducted with six participants with PPA. A qualitative descriptive approach was used to describe responses from participants on: (i) what they experienced prior to receiving their diagnosis; (ii) their experience of receiving the diagnosis; and (iii) how they were living with their PPA. Verbatim transcripts were analysed using thematic analysis to identify main themes. Results Analysis revealed a superordinate theme of Multifaceted Grief with subthemes described in sequence of research questions posed, representing the three phases of Pre-Diagnosis, Time of Diagnosis, and Post-Diagnosis. Themes collectively revealed participants’ ongoing experience of loss in dealing with the evolving challenges of Primary Progressive Aphasia. Experiences of loss emerged with descriptions of feelings, thoughts, and limitations in relation to changes imposed by the illness, impacting daily activities and life roles central to participants’ pre-diagnosis sense of self. Conclusion Participants’ affective, behavioural and cognitive reactions to their Primary Progressive Aphasia diagnosis marks the onset of Multifaceted Grief borne of loss of communication and cognition. Participants expressed a need for information regarding a possible Primary Progressive Aphasia trajectory and support to enable a successful transition as their disease progressed. Collaborative engagement between speech pathologists and people with Primary Progressive Aphasia incorporates addressing all levels of the International Classification of Functioning and Health by considering neurological, psychological, and psychosocial experiences of the person with the diagnosis.

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Section: Discussionmentioning

confidence: 87%

The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study

Bricker-Katz

Ballard

et al. 2022

Dementia

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“…In this case, healthcare providers could consider group education or making peer groups when planning education. Using supporting resources enables family caregivers to understand how to manage delirium while enhancing engagement and socialisation (Whitlatch & Orsulic‐Jeras, 2018). Additionally, healthcare providers should actively use web‐based educational materials.…”

Section: Discussionmentioning

confidence: 99%

Educational intervention for family caregivers of older adults with delirium: An integrative review

Yeom

Yoo

Hong

2023

Journal of Clinical Nursing

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AimTo propose educational strategies to prevent delirium in older adults.DesignIntegrative review.MethodsThis review followed the methodology of Whittemore and Knafl (J Adv Nurs 52(5):546–553, 2005. 10.1111/j.1365‐2648.2005.03621.x).Data SourcesA literature search was performed of the PubMed, CINAHL, Embase, Cochrane Library CENTRAL, and Scopus databases on 8 July 2022.ResultsThree themes of educational interventions were identified: capacity building, resource provision and enhancement of relationships, collectively termed Fa‐CARE. Educational interventions improved family caregivers' knowledge about delirium, their anxiety; depression; self‐efficacy; and attitudes. Among older adults, these interventions improved the duration, severity and incidence of delirium; functional abilities; and length of hospital stay.ConclusionProviding education to family caregivers benefits both those caregivers and the older adults. When planning educational intervention, diverse and innovative approaches need to be considered.Implications for the profession and/or patient careThis study can guide family education regarding the care of older adults with delirium.Impact Educational interventions positively impacted both family caregivers and older adults with delirium. Educational interventions provide family caregivers with resources, improve their capacity for delirium management, and enhance their relationships with older adults. This study suggests future directions in education for family caregivers of older adults with delirium. Reporting methodThis review adhered to the EQUATOR guidelines by using the PRISMA 2020 checklist.Patient or public contributionNo patient or public contribution.

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“…Nonetheless, the identified information aligns with what is known to be important for caregivers as dementia progresses. Caregivers need information about dementia in the early and middle stages; how to manage behavioral and psychological symptoms in the middle stages; and alternative living arrangements in the late stages (Whitlatch & Orsulic-Jeras, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…The codes were “theory-driven,” in that transcripts were approached with specific topics in mind that the research team wished to code around (Braun & Clarke, 2006). Specifically, the researchers mainly relied on codes directly representing the four components of health information-seeking behavior (Lambert & Loiselle, 2012) and common types of information that caregivers need (Iribarren et al, 2019; Mastel-Smith & Stanley-Hermanns, 2012; McCabe et al, 2016; Peterson et al, 2016; Steiner et al, 2016; Whitlatch & Orsulic-Jeras, 2018). Third, three researchers independently coded transcripts and met to reconcile coding disagreements, clarify code names and definitions, and add codes that emerged from the data.…”

Section: Methodsmentioning

confidence: 99%

“…Notably, research has mainly focused on the first and third components. For instance, caregivers seek the following types of information: dementia and its progression, healthcare services and treatment, and caregiver self-care (Iribarren et al, 2019; Mastel-Smith & Stanley-Hermanns, 2012; McCabe et al, 2016; Peterson et al, 2016; Steiner et al, 2016; Whitlatch & Orsulic-Jeras, 2018). Meanwhile, the main sources of information for caregivers are clinicians, support groups, family members/friends, and websites (Allen et al, 2018).…”

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confidence: 99%

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Health Information-Seeking Behavior of Latino Caregivers of People Living with Dementia: A Mixed-Methods Study

et al. 2023

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This mixed-methods study examined the health information-seeking behavior of Latino caregivers of people living with dementia. A structured survey and semi-structured interviews were conducted with 21 Latino caregivers in Los Angeles, California. For triangulation, semi-structured interviews were also conducted with six healthcare and social service providers. The interview transcripts were coded and analyzed via thematic analysis, while the survey data were summarized using descriptive statistics. The results show that caregivers sought information on what changes to expect as dementia progresses. Some desired detailed (limited) information to be better prepared (to worry less). The most common action to address their information needs was searching the Internet. However, those who did this tended to be concerned about the quality of information. Overall, this study sheds light on how much detail Latino caregivers desire in the information they need and the actions they take to obtain this information.

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O2‐08‐04: Support, health, activities, resources, and education: The evidence‐based share program for persons with early‐stage dementia and their family caregivers

Cited by 9 publications

References 0 publications

The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study

The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study

Educational intervention for family caregivers of older adults with delirium: An integrative review

Health Information-Seeking Behavior of Latino Caregivers of People Living with Dementia: A Mixed-Methods Study

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