On Friday 3 July, a consultation with eight people with lived experience from across Europe was held as part of the Innovative Health Initiative funded project, ACCESS-AD. Led by Ana Diaz (Public Involvement Lead) the session invited people with lived experience to share their views on dementia care provision in the primary care setting and their perspectives on possible new pathways, tools or management methods. Rich discussion about accessing care and time constraints in primary care, awareness and knowledge problems and diagnostic and prognostic uncertainty ensued. These factors ultimately resulted in people with lived experience feeling unsupported and there was a perceived lack of adequate communication and follow-up – particularly when they compared their care experiences to other disease pathways like cancer.
The second part of the consultation focused on new tools, pathways and treatments. In this respect, people with lived experience provided detailed recommendations for how these might be optimally implemented including giving consideration to caregiver involvement, carefully contemplating their overall appeal and presentation, personalisation, and appropriate resource. Lastly, people with lived experience identified some areas in the researchers’ provisional qualitative interview guide that may be missing, including the need to explore trust, continuity and caregiver involvement.
Overall, this was a fruitful consultation and the researchers from King’s College who intend to interview Primary Care clinicians in the future, voiced that the insights would influence the direction of the questions they will ask.
