Navigating Life After Dementia Diagnosis: Questions, Challenges, and Support Needs Among Dementia Dyads
- 1The University of Iowa
Abstract
BackgroundOlder adults living with mild cognitive impairment (MCI) or Alzheimers disease and related dementias (AD/ADRD) and their care partners face substantial daily challenges that evolve with disease progression and extend far beyond the clinical setting, including symptom management, care coordination, healthcare navigation, and planning for future care needs. Understanding these challenges is essential for developing innovative solutions to provide ongoing and targeted support. In this study, we explored questions, challenges, and support needs dementia dyads experienced following diagnosis to inform the development of an artificial intelligence (AI)-based chatbot designed to provide ongoing support for dementia dyads.
MethodsWe recruited 11 community-dwelling dyads comprising persons living with MCI or mild AD/ADRD and their care partners, one additional care partner, and 12 dementia care experts from academic medical centers, clinics, and aging organizations in the U.S. We conducted semi-structured interviews and analyzed them using conventional content analysis.
ResultsParticipants described interconnected questions, challenges, and support needs that evolved while navigating life with MCI or AD/ADRD. Questions centered around day-to-day care management, medical concerns, behavioral symptom management, diagnosis and prognosis, safety, and resources and services. Challenges included care partner overwhelm, limited dementia knowledge, condition-related uncertainty, healthcare system navigation difficulties, financial constraints, and technology-related barriers. Participants identified needs for ongoing education, personalized care planning, resource navigation, logistical support and follow-up, culturally responsive care, and social and emotional support.
ConclusionsDementia dyads experience substantial informational, emotional, and practical support needs in the early stages of MCI and AD/ADRD. Findings suggest that post-diagnostic support should extend beyond information provision alone to provide ongoing, personalized, and practical guidance that helps dyads navigate changing needs, resources, and everyday dementia care. These findings are informing the development of an AI-based chatbot intended to complement existing dementia care by extending access to education, practical guidance, and resource navigation between clinical encounters.
Related
- Double‐lumen tube insertion and one‐lung ventilation in Coffin–Siris syndrome: navigating airway challenges in severe scoliosis surgery*
- Editorial: Silver linings: navigating the challenges and opportunities of organ transplantation in an Ageing population
- Navigating the Diagnostic Challenges of Colloid Milium: A Case Report.
- ‘Navigating the ride’: stakeholder perspectives on public transportation challenges for children with autism in India
- Eosinophilia and Hypereosinophilia: A Practical Approach to Navigating a Broad Differential Diagnosis
BibTeX
@misc{britt2026navigating,
title = {{Navigating Life After Dementia Diagnosis: Questions, Challenges, and Support Needs Among Dementia Dyads}},
author = {K. Britt and A. Harb and B. Bailey and B. Saffold and X. Luo and R. T. Brown and B. Huang},
howpublished = {medRxiv},
year = {2026},
month = oct,
doi = {10.64898/2026.10.07.26364992},
url = {https://www.medrxiv.org/content/10.64898/2026.10.07.26364992v1},
note = {CC BY-NC-ND},
}
RIS
TY - UNPB
TI - Navigating Life After Dementia Diagnosis: Questions, Challenges, and Support Needs Among Dementia Dyads
AU - K. Britt
AU - A. Harb
AU - B. Bailey
AU - B. Saffold
AU - X. Luo
AU - R. T. Brown
AU - B. Huang
PY - 2026
DA - 2026/10/07
PB - medRxiv
DO - 10.64898/2026.10.07.26364992
UR - https://www.medrxiv.org/content/10.64898/2026.10.07.26364992v1
AB - BackgroundOlder adults living with mild cognitive impairment (MCI) or Alzheimers disease and related dementias (AD/ADRD) and their care partners face substantial daily challenges that evolve with disease progression and extend far beyond the clinical setting, including symptom management, care coordination, healthcare navigation, and planning for future care needs. Understanding these challenges is essential for developing innovative solutions to provide ongoing and targeted support. In this study, we explored questions, challenges, and support needs dementia dyads experienced following diagnosis to inform the development of an artificial intelligence (AI)-based chatbot designed to provide ongoing support for dementia dyads. MethodsWe recruited 11 community-dwelling dyads comprising persons living with MCI or mild AD/ADRD and their care partners, one additional care partner, and 12 dementia care experts from academic medical centers, clinics, and aging organizations in the U.S. We conducted semi-structured interviews and analyzed them using conventional content analysis. ResultsParticipants described interconnected questions, challenges, and support needs that evolved while navigating life with MCI or AD/ADRD. Questions centered around day-to-day care management, medical concerns, behavioral symptom management, diagnosis and prognosis, safety, and resources and services. Challenges included care partner overwhelm, limited dementia knowledge, condition-related uncertainty, healthcare system navigation difficulties, financial constraints, and technology-related barriers. Participants identified needs for ongoing education, personalized care planning, resource navigation, logistical support and follow-up, culturally responsive care, and social and emotional support. ConclusionsDementia dyads experience substantial informational, emotional, and practical support needs in the early stages of MCI and AD/ADRD. Findings suggest that post-diagnostic support should extend beyond information provision alone to provide ongoing, personalized, and practical guidance that helps dyads navigate changing needs, resources, and everyday dementia care. These findings are informing the development of an AI-based chatbot intended to complement existing dementia care by extending access to education, practical guidance, and resource navigation between clinical encounters.
ER -