Exploring experiences of dementia post-diagnosis support and ideas for improving practice: A co-produced study

It takes time to adjust to a diagnosis of dementia. Post-diagnosis support has an important part to play in navigating this transition. However, it is often scarce and variable according to location. This co-produced study explored experiences of support across the UK. The project was co-designed and implemented with people living with dementia. Five focus groups were attended by 18 people with dementia and 10 spouses from across the UK. The aim was to find out what support people currently received, what aspects they valued, and what they would like to see done differently. Most participants reported feeling abandoned after diagnosis, with little continuity of care. Many felt the burden of navigating post-diagnosis life was on them and their loved ones, with a perceived scarcity of support, and difficulties navigating the benefits system. Peer/voluntary support was seen as vital in promoting confidence, a source of relational support, and finding out crucial information relating to benefits, healthcare, and management of symptoms. Participants felt dementia was stigmatised, receiving less support than other medical conditions. Participants identified aspects of post-diagnosis support they valued, and collaborated on ideas for support structures and services they would like to see introduced. In concluding this study, we argue that post-diagnosis support services could be improved with the input of people living with dementia. This could reduce the burden on those receiving the diagnosis to find advice and support outside of health and social care systems. For future research, the financial implications of a dementia diagnosis have rarely been discussed and warrants further exploration.