A national survey of dementia diagnosis and care in English memory services

In England, National Health Service (NHS) memory services provide most dementia diagnostic and immediate post-diagnostic care. We aimed to co-design and conduct a survey regarding diagnostic and post-diagnostic care, and perceived readiness for new treatments.

We invited all memory services in England to complete the survey. We compared services by provider type, investigating whether service characteristics (provider type, rurality, region, referral rates, staffing mix, accreditation) were associated with diagnosis rates and psychological therapy provision.

139/188 (73.9%) memory services participated, 130 (93.5%) provided by mental health/community and 9 (6.5%) by acute trusts. We estimated that English memory services receive 192,418 referrals/year, 98.7% to mental health/community trust services. In these services, the median annual referral rate per Full Time Equivalent (FTE) staff was 100.8 (Interquartile range: 56.7-132.8). Of FTE memory service staff, 14.0% (9.0-19.0%) were doctors. Acute trust-based services reported fewer referrals (45.8, 21.1-99.5) and had more doctors (33.0%, 23.0-43.0% FTE). More acute trust services felt ready to prescribe dementia Disease Modifying Treatments (N = 8 [88.9%]) than mental health/community services (N = 50, [41.7%]), while fewer acute trusts offered post-diagnostic psychological therapy routinely (N = 5 [55.6%]) vs. (N = 100 [77.5%]) in community services. NHS region (β = 0.70 [95% Confidence interval (CI): 0.08, 1.32]) and rurality (β = 2.14, [95% CI: 1.32, 2.96]) predicted lower diagnostic rates; regions with highest dementia diagnosis rates (67%+) had more memory service staff relative to the local aged 65 + population size.

We identified marked geographical inequalities. People in regions with less resourced memory services and rural areas had less access to timely diagnosis and care.