Financial counselling gaps in Alzheimer's care: Patient out-of-pocket expenses and physician barriers in a regional German cross-sectional pilot study

Alzheimer's disease (AD) is associated with substantial societal and household costs, but patient-level direct out-of-pocket expenses and perceived financial counselling needs in routine memory-clinic care remain insufficiently characterised. We conducted a regional exploratory mixed-methods cross-sectional pilot survey in Schleswig-Holstein, Germany, including 38 patients recruited from a single university memory clinic and 136 responding outpatient physicians (general practitioners and neurologists; 8.8% response rate). Patients reported direct out-of-pocket expenses, perceived financial impact, and information/counselling needs. Physicians reported counselling practices, perceived burden, and barriers, complemented by brief free-text responses analysed using inductive qualitative content analysis informed by Grounded Theory coding principles. In this patient sample, 34% reported increased out-of-pocket expenses, most commonly medication co-payments and transportation costs. Nearly 40% reported insufficient information about financial implications and 32% expressed a strong desire for more financial counselling. Bayesian Kendall analyses indicated that higher household income was associated with better perceived health (τ = 0.39, 95% CrI [0.13, 0.58], BF₁₀ = 28.68) and perceived health with quality of life (τ = 0.80, 95% CrI [0.51, 0.90], BF₁₀ = 5.62 × 10 8 ). Longer time since symptom onset was associated with lower perceived health (τ = −0.33, 95% CrI [−0.52, −0.08], BF₁₀ = 8.40) and quality of life (τ = −0.38, 95% CrI [−0.56, −0.13], BF₁₀ = 25.64), whereas evidence for an association with total out-of-pocket expense category was inconclusive (τ = 0.20, 95% CrI [−0.04, 0.40], BF₁₀ = 0.86). Among responding physicians, 64% reported rarely or never discussing financial aspects of AD care. Free-text responses described time constraints, limited training/resources, and uncertainty about professional role boundaries. Thus, modest direct out-of-pocket expenses in this local sample coexisted with substantial perceived information and counselling needs. Because of the single-clinic patient sample and low physician response rate, these findings are exploratory and should not be interpreted as representative of German AD care.