Thematic analysis of challenges and needs of family caregivers of persons living with dementia: Planning for a digital platform to address financial, legal, and functional care

Document Type

Journal Article

Publication Date



JMIR aging




BACKGROUND: Alzheimer's disease (AD) and AD-related dementias (ADRD) represent complex neuropathologies directly challenging individuals, their families, and communities within the United States of America (USA). To support persons living with dementia (PLwD), family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely utilized solution, such as a consolidated online assistance or guidance platform, is missing, compounding care challenges. OBJECTIVE: In preparation for designing an interactive online AI-driven digital resource platform, a qualitative study was conducted to characterize the challenges and needs of family caregivers in the United States. METHODS: A semi-structured 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 firstly invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange an online in-depth interview via Zoom from January to May 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants' demographic, 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 pre-screening of 150 eligible respondents, 30 individuals completed both the interviews and follow-up survey, allowing an in-depth look into the challenges, experiences, and expectations of primary caregivers of PLwD. Most participants were primary caregivers for persons with dementia, and 93.3% provided care for at least a year. The majority of participants were over the age of 50 (83.3%), female (76.7%), White (83.3%), non-Hispanic (90.0%), and held a bachelor's degree or a graduate degree (73.4%). Collectively, all participants acknowledged challenges in caring for PLwD. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. Additionally, 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 quality of care and reduce caregiver burden. CONCLUSIONS: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive online platform to mitigate current challenges within the caregiving role.


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