The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review

Waligora, Kyra J.; Bahouth, Mona N.; Han, Hae Ra

doi:10.1093/geront/gny076

Cited by 64 publications

(91 citation statements)

References 49 publications

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“…Existing reviews mostly focus on caregivers, their needs in general, or interventions to address caregiver needs, or have been undertaken more than 10 years ago [8,10,16]. In this scoping review, we aim to provide a broad scope of the current evidence by including perspectives of both people with dementia and non-professional caregivers, without any restrictions on publication date, to summarise and identify the information needs and information seeking behaviour of people with dementia and their nonprofessional caregivers.…”

Section: Introductionmentioning

confidence: 99%

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

Soong

Kyaw

et al. 2020

BMC Geriatr

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Background: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers' access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. Methods: We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson's model of information behaviour. Results: Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. Conclusion: Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.

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Section: Introductionmentioning

confidence: 99%

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

Soong

Kyaw

et al. 2020

BMC Geriatr

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“…Family and friend caregivers incur physical, psychological, social, and financial costs as part of their role and often experience stigmatization due in part to the lack of understanding surrounding dementia in the majority of countries (WHO, 2018). Caring for a loved one with dementia can be burdensome, and many caregivers suffer from reduced quality of life (Takai et al, 2011;Tomomitsu et al, 2014), limiting social engagement and support (Waligora, Bahouth & Han, 2018), stress-related cognitive dysfunction (Oken et al, 2011), and depression and anxiety (Sörensen and Conwell, 2011;Laks et al, 2016). Evidence suggests that caring for a PWD is more burdensome than caring for persons living with other illnesses (Alzheimer's Association, 2012; Pinto and Barham, 2014).…”

Section: Introductionmentioning

confidence: 99%

Understanding the needs of caregivers of persons with dementia: a scoping review

Queluz

Kervin

Wozney

et al. 2019

Int. Psychogeriatr.

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Background:The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs.Method:A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework.Results:Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%).Conclusion:This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.

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“…Existing reviews mostly focus on caregivers, their needs in general, or interventions to address caregiver needs, or have been undertaken more than 10 years ago (8,10,16). In this scoping review, we aim to provide a broad scope of the current evidence by including perspectives of both people with dementia and non-professional caregivers, without any restrictions on publication date, to summarise and identify the information needs and information seeking behaviour of people with dementia and their non-professional caregivers.…”

Section: Introductionmentioning

confidence: 99%

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

Soong¹,

Au²,

Kyaw³

et al. 2020

Preprint

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Background: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers’ access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. Methods: We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson’s model of information behaviour. Results: Twenty studies with a total of 4,140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. Conclusion: Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.

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The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review

Cited by 64 publications

References 49 publications

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

Understanding the needs of caregivers of persons with dementia: a scoping review

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

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