How people find advice and support to live well in the early years after dementia diagnosis

Healthwatch Surrey carried out semi-structured interviews with carers of people with dementia. The research set out to understand the extent to which people with a diagnosis of dementia and their carers are receiving the information they are entitled to, accessing the full range of support and services available, managing their care safely and effectively, and referring themselves appropriately as the condition progresses.

26 interviews took place over the phone, by video call, or face-to-face in July and August 2021. Most carers did not feel they had been well supported, and a lack of support increased their already overwhelming emotional burden. People were not aware of or accessing basic, universal support services such as Council Tax Rebates or Continence Services.

The most valuable sources of support post-discharge are support groups, guides and navigators, training courses, and clinical oversight. People told Healthwatch Surrey that they were disappointed by the support offered by GPs.

Recommendations:

• Build access to Dementia Navigators who proactively contact those with a dementia diagnosis
• Undertake a strategic overview of Support Groups and build provision in areas with weaker support, help groups become more resilient, and support dissemination of high-quality information through groups
• Empower Primary Care to signpost effectively