Dementia Care Specialists Perspectives of Diagnosis and Early Psychosocial Care: A Qualitative Analysis of Focus Groups in Two Large Academic Medical Centers.

Abstract

Background and objective: Alzheimer's disease and related dementias (ADRDs) are progressive conditions that substantially impact individuals and families. Timely diagnosis and early support are critical for long-term adjustment. However, current dementia care models do not meet needs of patients and families. Dementia care specialists treating individuals with dementia offer unique insight into care needs of diverse groups of patients, families, and healthcare systems that can be used to identify opportunities to improve care.To understand dementia care specialists' impressions of factors impacting ADRD diagnosis and post-diagnosis support. We aimed to identify factors that impact: (1) timely and accurate diagnosis, (2) diagnostic disclosure and provision of post-diagnosis support, and (3) patient and care-partner adjustment after diagnosis.

Research design and methods: We recruited dementia care specialists treating persons living with dementia (n=19) from two academic medical centers. Participants completed 60-minute qualitative focus groups or individual interviews. Data were analyzed using a hybrid inductive-deductive approach to thematic analysis.

Results: We identified subthemes within three overarching a-priori determined themes. Participants highlighted the presence of delays in referrals, time constraints, specialist discomfort, and lack of training as factors impacting the timeliness and accuracy of diagnosis. They also highlighted information needed in disclosure visits, ways of coordinating care, and identifying early support needs. Finally, participants highlighted factors impacting adjustment including families' insight and acceptance, distress, and available resources.

Discussion and implications: Our study highlights the challenges dementia care specialist specialists face in delivering early support for individuals and families impacted by ADRDs and suggests avenues for revising existing care models.