Information and Service Needs of Persons With Alzheimer's Disease and Their Family Caregivers Living in Rural Communities

Edelman, Perry; Kühn, Daniel; Fulton, Bradley R.; Kyrouac, Gregory A.

doi:10.1177/1533317506290664

Cited by 46 publications

(53 citation statements)

References 27 publications

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“…Caregiver education, thereby, involves an assessment of needs and provision of the appropriate information. Adequate caregiver education has the potential to improve the health of the patient and caregiver (Gelmini et al, 2009;van Exel et al, 2005) and to decrease health care costs (Edelman et al, 2006;Pierce et al, 2009). By improving support given to caregivers, they can maintain their caregiving role longer, to both the benefit of their care recipient and to the economics of the U.S. health care system.…”

Section: Resultsmentioning

confidence: 99%

“…In regard to caregivers of persons with dementia, the literature suggests that information about the disease, including diagnosis, stages, symptoms, and treatment, is desired (Edelman et al, 2006;Wackerbarth & Johnson, 2002). Neither of these studies elucidates specific symptoms, for instance, that are particularly bothersome to caregivers of persons with dementia.…”

Section: Discussionmentioning

confidence: 99%

“…Wackerbarth and Johnson (2002) surveyed caregivers (N = 128), finding that caregivers' important information needs were related to legal, financial, and diagnosis and treatment needs. Edelman, Kuhn, Fulton, and Kyrouac (2006) also surveyed caregivers (N = 100) and found the top areas of interest to be on information about Alzheimer's disease (e.g., stages and symptoms, treatments, and genetic aspects) and topics concerning day-to-day care (e.g., coping with symptoms and communicating with the care recipient). Nichols and associates (2009) surveyed caregivers (N = 165 total) and found that depressed caregivers (n = 56 of the 165 participants) requested more information about depression, adult day care, and caregiver's emotional feelings.…”

Section: Introductionmentioning

confidence: 99%

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Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

Koenig

Steiner

Pierce

2011

Gerontology & Geriatrics Education

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This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating questions/actions (61%) in care recipients. Rehabilitation caregivers' (n = 40) top needs were handling care recipients' mobility problems (75%) and dealing with their own stress (65%). Dementia caregivers focused on care recipients' needs related to behavioral symptoms, whereas rehabilitation caregivers focused on needs related to physical care of care recipients and their own needs.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

Koenig

Steiner

Pierce

2011

Gerontology & Geriatrics Education

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“…Frameworks of caregiver needs have been proposed, almost always tailored to the context of specific diseases and conditions. For instance, in a study of information and service needs in dementia, Edelman et al organized caregiver (and care recipient) concerns into 4 main domains: care, coping, medical, and services [23]. Other authors have roughly categorized caregiver needs as being informational (about illness, services, and what to expect), instrumental (related to building caregiving skills), and emotional (related to support and coping) [24-26].…”

Section: Introductionmentioning

confidence: 99%

Information-Seeking at a Caregiving Website: A Qualitative Analysis

Kernisan¹,

Sudore²,

Knight³

2010

J Med Internet Res

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BackgroundThe Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of “e-caregivers” and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents.ObjectiveThe objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging.MethodsFrom March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?” and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes.ResultsOf the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included “health information,” “practical caregiving,” and “support.” Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to expect over the course of a health condition or treatment.ConclusionVisitors to a website targeting adults caring for aging parents reported seeking both general information on caregiving and specific assistance with the complex custodial, medical, emotional, and financial aspects of caregiving. Visitors requested both information to build caregiving skills as well as assistance in interpreting and knowing what to expect from symptoms, health conditions, and changes in behavior and relationships. Many desired communication with and support from other caregivers. Health care providers and eHealth developers should expect that many caregivers of elders are using the Internet as a resource. Further research and development is needed to fully realize the Internet’s potential for education and support of caregivers.

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“…Caregivers’ needs are based on the care recipient’s disease and disease management skills, home modifications, and the provision of supplies in the home. Consideration of the caregiver’s own personal, physical, spiritual, and psychological needs, however, often take a back seat to the care recipient’s needs by the family caregiver and professional nurses [19,20,21,22,23,24]. Where the caregiver lives may impact the needs of the caregiver and their ability to have help with the tasks they provide for the elder.…”

Section: Introductionmentioning

confidence: 99%

A Model of Health for Family Caregivers of Elders

Weierbach¹,

Chen²

2016

Healthcare

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Family members who provide care to their loved ones experience changes in their own health. The caregiver health model (CGHM) is a new model that identifies health holistically and identifies four determinant(s) that contribute to the health status of the family caregiver. The purpose is to introduce the CGHM: Hypothesis 1: the determinants of health in the CGHM contribute to the health of the Caregiver, Hypothesis 2: the determinants of health contribute to changes in the caregivers’ health at 8 and 16 weeks, and Hypothesis 3: a change in health occurs from baseline to 8 and 16 weeks. Methods: A descriptive, longitudinal design used three data collection points and five survey instruments. Community recruitment (N = 90) occurred through word of mouth and newspapers. Inclusion criteria consisted of being a family caregiver, living in a rural residence, and providing care to elders with necessary activities of daily living (ADLs) and/or instrumental ADLs (IADLs). Following a participant generated phone call to provide consent, caregivers received an initial study packet, additional packets were sent upon return of the previous packet. Analysis for the three hypotheses included multiple backwards stepwise linear regression, generalized estimating equations (GEE), and analysis of variance (ANOVA) α = 0.05. Results: A significant decrease in mental (p < 0.01) but not physical health at 8 weeks (p = 0.38) and 16 weeks (p = 0.29) occurred over time. Two determinants displayed significant (p < 0.05 or less) changes in mental and/or physical health at one or more time points. Study limitations include caregiver entry at varying times and self-report of elder nursing needs and medical conditions. Conclusions: Findings support two of the four determinants contributing to caregiver health.

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Information and Service Needs of Persons With Alzheimer's Disease and Their Family Caregivers Living in Rural Communities

Cited by 46 publications

References 27 publications

Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

Information-Seeking at a Caregiving Website: A Qualitative Analysis

A Model of Health for Family Caregivers of Elders

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