NDLI: Inaccessibility, unresponsiveness, inconsistency, and invisibility of informal caregivers of older persons with cognitive impairment: community-based participatory research

Content Provider	Springer Nature : BioMed Central
Author	Okamura, Tsuyoshi Ura, Chiaki Kugimiya, Yukiko Okamura, Mutsuko Yamamura, Masako Okado, Hidemi Kaneko, Mayumi Yamashita, Mari Wakui, Tomoko
Abstract	Background Studies on informal caregivers in Japan have been limited to family caregivers and largely conducted where family caregivers generally gather. Family caregivers who do not visit such places or non-family caregivers are generally overlooked, and data on these informal caregivers remains scant. Consequently, a framework is needed through which healthcare professionals can approach the informal caregivers of community-dwelling older persons. Therefore, this study approaches such informal caregivers and proposes a classification system for them from the starting point of older persons living in the community with cognitive impairment. Methods In 2016, we conducted an epidemiological survey of 7000 + community-dwelling older persons and identified 198 residents with Mini-mental state examination scores less than 23. A team of healthcare professionals contacted them regularly. By 2022, 92 people were still living in the community, and we systematically asked them about their informal caregivers. After approaching the caregivers and obtaining informed consent, we mailed separate questionnaires to older persons and informal caregivers. Results Among the caregivers, 59%, 34%, and 3% were the child, spouse, and sibling of the older person, while the remaining 4% were non-family caregivers. Except for two daughters-in-laws, all children were biological children of the older person. Male caregivers (46%) tended to have full-time jobs, whereas female caregivers (54%) tended to face financial difficulties. Only 3% of the caregivers had joined a family caregivers’ association. Caregivers’ reason for not joining such organizations was a lack of time and knowledge. A 3-tiered classification system was developed for these informal caregivers: (1) the household form, (2) accessibility, and (3) the reciprocal awareness of caregiving. Furthermore, family caregivers who lived with the older person or visited them more than once a week with reciprocal awareness of caring and being cared, or “traditional caregivers,” accounted for 68% of the caregivers in this study. Conclusion Core family caregivers can be easily approached at places where such caregivers generally gather. However, there also exists a group of informal caregivers who are sometimes inaccessible, unresponsive, and invisible to healthcare professionals. Moreover, their awareness of caregiving is sometimes inconsistent.
Related Links	https://bmcgeriatr.biomedcentral.com/counter/pdf/10.1186/s12877-023-04542-5.pdf
Ending Page	10
Page Count	10
Starting Page	1
File Format	HTM / HTML
ISSN	14712318
DOI	10.1186/s12877-023-04542-5
Journal	BMC Geriatrics
Issue Number	1
Volume Number	23
Language	English
Publisher	BioMed Central
Publisher Date	2023-12-06
Access Restriction	Open
Subject Keyword	Geriatrics Gerontology Aging Rehabilitation Older persons Family caregiver Informal caregiver Caregivers Japan Traditional caregiver Cognitive impairment Geriatrics/Gerontology
Content Type	Text
Resource Type	Article
Subject	Geriatrics and Gerontology
Journal Impact Factor	3.4/2023
5-Year Journal Impact Factor	4.1/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Family caregiver’s concerns and anxiety about unaccompanied out-of-home activities of persons with cognitive impairment

Systematic review of information and support interventions for caregivers of people with dementia

Technology-based interventions on burden of older adults’ informal caregivers: a systematic review and meta-analysis of randomized controlled trials

Factors associated with family caregiver burden among frail older persons with multimorbidity

Cognitive function is associated with risk aversion in community-based older persons

Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: a longitudinal prospective cohort study

Establishing a composite endpoint for measuring the effectiveness of geriatric interventions based on older persons’ and informal caregivers’ preference weights: a vignette study

Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment? - long-term results of the German day-care study (RCT)

Everyday challenges facing high-risk older people living in the community: a community-based participatory study

Inaccessibility, unresponsiveness, inconsistency, and invisibility of informal caregivers of older persons with cognitive impairment: community-based participatory research

Similar Documents

Family caregiver’s concerns and anxiety about unaccompanied out-of-home activities of persons with cognitive impairment

Systematic review of information and support interventions for caregivers of people with dementia

Technology-based interventions on burden of older adults’ informal caregivers: a systematic review and meta-analysis of randomized controlled trials

Factors associated with family caregiver burden among frail older persons with multimorbidity

Cognitive function is associated with risk aversion in community-based older persons

Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: a longitudinal prospective cohort study

Establishing a composite endpoint for measuring the effectiveness of geriatric interventions based on older persons’ and informal caregivers’ preference weights: a vignette study

Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment? - long-term results of the German day-care study (RCT)

Everyday challenges facing high-risk older people living in the community: a community-based participatory study

Inaccessibility, unresponsiveness, inconsistency, and invisibility of informal caregivers of older persons with cognitive impairment: community-based participatory research