Objectives
Despite UK policy initiatives to promote earlier dementia diagnosis, delays remain common and informal caregiver contributions are often overlooked. Informal caregivers are frequently the first to notice cognitive and behavioural changes, yet their experiences of the diagnostic process are poorly understood. This study explored informal caregivers’ perspectives on navigating memory assessment services to identify contributions, barriers and unmet support needs.
Method
A narrative qualitative design was used. Eleven current or former caregivers of people with dementia were interviewed online or in-person. Anonymised transcripts were analysed using narrative analysis to identify shared patterns across diagnostic journeys.
Results
Informal caregivers described a five-stage journey: early symptoms, moving from suspicion to concern (primary care), specialist referral, receiving the diagnosis and life after diagnosis. Delays and obstacles occurred at every stage, including minimisation of concerns, inappropriate or delayed referrals, and long waiting times. Assessments were perceived as rigid and culturally limited, while interactions with services felt impersonal and post-diagnostic support was inconsistent.
Conclusion
Caregivers acted as informal co-diagnosticians but felt undervalued. Improving dementia diagnosis requires better integration of caregiver knowledge, culturally responsive assessments and proactive, tailored post-diagnostic support. Future work should co-design tools, awareness campaigns and remote multilingual pathways with stakeholders to enable earlier and more equitable diagnoses.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)