TY - JOUR
T1 - Financial, Legal, and Functional Challenges of Providing Care for People Living With Dementia and Needs for a Digital Platform
T2 - Interview Study Among Family Caregivers
AU - Fan, Qiping
AU - DuBose, Logan
AU - Ory, Marcia G.
AU - Lee, Shinduk
AU - Hoang, Minh Nguyet
AU - Vennatt, Jeswin
AU - Kew, Chung Lin
AU - Doyle, David
AU - Falohun, Tokunbo
N1 - Funding Information:
The findings of this study will contribute to the design of a digital health platform funded by the National Institute on Aging through the Small Business Innovation Research program aimed at enhancing caregiving support.
Funding Information:
The authors acknowledge the support provided by the Center for Population Health and Aging at Texas A&M University. They also appreciate all the participants’ perspectives and thank them for sharing their experiences and contributing to the understanding of this important topic. This study was supported by the National Institute on Aging Small Business Innovation Research program (contract 1R44AG074116-01; solicitation AG21-025).
Publisher Copyright:
© The Author(s) 2023.
©Qiping Fan, Logan DuBose, Marcia G Ory, Shinduk Lee, Minh-Nguyet Hoang, Jeswin Vennatt, Chung Lin Kew, David Doyle, Tokunbo Falohun. Originally published in JMIR Aging (https://aging.jmir.org), 05.09.2023.
PY - 2023/9/5
Y1 - 2023/9/5
N2 - Background: Alzheimer disease and Alzheimer disease–related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. Objective: In preparation for designing an internet-based artificial intelligence–driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. Methods: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants’ demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. Results: Following the prescreening of 150 eligible respondents, 20% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67%) were primary caregivers of persons with dementia, and 93% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83%), female (23/30, 77%), White (25/30, 83%), and non-Hispanic (27/30, 90%) and held a bachelor’s or graduate degree (22/30, 73%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. Conclusions: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role.
AB - Background: Alzheimer disease and Alzheimer disease–related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. Objective: In preparation for designing an internet-based artificial intelligence–driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. Methods: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants’ demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. Results: Following the prescreening of 150 eligible respondents, 20% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67%) were primary caregivers of persons with dementia, and 93% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83%), female (23/30, 77%), White (25/30, 83%), and non-Hispanic (27/30, 90%) and held a bachelor’s or graduate degree (22/30, 73%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. Conclusions: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role.
KW - Alzheimer disease
KW - caregiving challenges
KW - community-based participatory research
KW - dementia
KW - digital health
KW - family caregiver
KW - mobile phone
UR - http://www.scopus.com/inward/record.url?scp=85176550955&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85176550955&partnerID=8YFLogxK
U2 - 10.2196/47577
DO - 10.2196/47577
M3 - Article
C2 - 37526513
AN - SCOPUS:85176550955
SN - 2561-7605
VL - 6
SP - e47577
JO - JMIR Aging
JF - JMIR Aging
IS - 1
M1 - /e47577
ER -