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

Area of Science:

• Neurology
• Gerontology
• Public Health

Background:

• Adjusting to a dementia diagnosis is challenging.
• Post-diagnosis support is crucial but often scarce and inconsistent.
• This study addresses the variability in dementia support services across the UK.

Purpose of the Study:

• To explore the experiences of people living with dementia regarding post-diagnosis support.
• To identify valued aspects of current support and desired improvements.
• To co-design better support structures with people with dementia.

Main Methods:

• A co-produced study involving people living with dementia and their spouses.
• Five focus groups conducted across the UK.
• Qualitative exploration of current support, valued elements, and desired changes.

Main Results:

• Participants reported feeling abandoned post-diagnosis with little continuity of care.
• Scarcity of support and difficulties navigating benefits were common concerns.
• Peer and voluntary support were highly valued for confidence, information, and relational connection.

Conclusions:

• Post-diagnosis dementia support services require improvement, incorporating the perspectives of people with dementia.
• Involving people with dementia can reduce the burden on individuals and families seeking support.
• Further research into the financial implications of dementia diagnosis is warranted.