Resilient together for dementia: A qualitative study of couples’ treatment preferences to address distress early after diagnosis

Abstract

Background

Despite technological advances and earlier and more confident diagnoses, there is a lack of post-diagnosis support for couples navigating the challenges of early dementia. Clinically elevated emotional distress is common for both partners after diagnosis, and interferes with the health, relationships, and adjustment of both partners if not addressed.

Objective

Our objective was to gather in-depth information on couples’ preferences to inform the development of a proposed dyadic intervention addressing emotional distress early (within 6 months) after one partners’ receipt of a dementia diagnosis.

Methods

We recruited couples after a recent dementia diagnosis (N = 16 dyads; 32 participants) from a large academic medical center via direct provider referrals for 60-min virtual dyadic interviews. Data were analyzed using a hybrid inductive-deductive approach to thematic analysis.

Results

We identified themes within 3 a-priori determined domains. For dyadic intervention format (domain 1), couples preferred to participate in sessions together and to have flexible options for telehealth and in-person participation. Preferences for intervention content (domain 2) included information on dementia, skills to reduce distress and promote resiliency, and support to communicate about the diagnosis and related stress. Barriers and facilitators (domain 3) included denial or hesitation, resource constraints, and interests in learning skills and connecting to others.

Conclusions

We gathered comprehensive information that could be used to adapt existing dyadic interventions and to tailor support to match couples’ preferences early after dementia diagnoses. Early interventions should prioritize flexible delivery of information and skills to couples to support adaptive coping following dementia diagnoses.