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

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Summary of report content

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

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General details

Report title 
How people find advice and support to live well in the early years after dementia diagnosis
Local Healthwatch 
Healthwatch Surrey
Date of publication 
Tuesday, 21 December, 2021
Date evidence capture began 
Thursday, 1 July, 2021
Date evidence capture finished 
Tuesday, 31 August, 2021
Key themes 
Health protection
Information providing
Support
Other information of note about this report 
Carers

Methodology and approach

Primary research method used 
Structured interview

Details of health and care services included in the report

Primary care services 
GP practice
Community services 
Community based services for people with mental health needs

Details about conditions and diseases

Types of long term conditions 
Alzheimer’s disease or dementia

Details of people who shared their views

Number of people who shared their views 
26
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
Yes
What was the main sentiment of the people who shared their views? 
Negative

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Yes
Does the information contain a response from a provider? 
No
Is there evidence of impact in the report? 
No

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
 
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
 
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.