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 (Preprint) Institutional Repository Document

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 those with ADRD, 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.

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.

Family caregiver participants were recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. The participants were asked to complete a survey and an in-depth interview via Zoom online from January to May 2022. The survey aimed to provide an overview of the participants' demographic, socioeconomic characteristics, and caregiving information. A semi-structured interview topic guide was developed through engaging community partners and research partnerships. Thematic analysis was used to identify and organize themes and the study findings.

Following the pre-screening of 150 eligible respondents, 30 individuals completed both the interviews and survey, allowing an in-depth look into the challenges, experiences, and expectations of primary caregivers providing for persons living with Dementia (PLwD). Most participants were primary caregivers for persons with dementia, and 93.3% provided care for at least a year. Most 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 general 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, resource sharing, and community, enabling family caregivers to provide better care and reduce caregiver burden.

The Zoom online platform was an excellent research assessment tool in the COVID-19 era. Using this technology, 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.