Caring for someone with dementia: a unique journey

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Summary of report content

Healthwatch Bristol and Healthwatch South Gloucestershire collected feedback from local citizens relating to Carers support and interviewed participants with lived experience of caring to help understand what matters most to those effected by caring for someone with dementia and the services available to support this.

Carers’ experiences and needs are varied but fall into broad themes:

Ethnically sensitive and tailored care for dementia patients would help to ease the burden for the carer by removing the need for the family carer to be present whilst the patient received paid care. If Carers were able to access flexible appointments to fit with caring commitments, there would be fewer missed opportunities to support Carers needs.

  • Carers often feel overwhelmed with information and appointments from different places after diagnosis.
  • Carers told us that counselling is not universally offered and that respite is essential for their mental wellbeing
  • Younger Carers expressed feeling more isolated and less well served.
  • Female carers said they were able to discuss their feelings and ask for emotional support, but male carers said they did not.
  • Carers said they would like honest conversations that helped them form a clearer picture of the journey ahead.
  • Those Carers without family support struggled with emotional issues.

The report contains nine recommendations covering support for carers, appointments, the need for appropriate support and access to information.

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General details

Report title 
Caring for someone with dementia: a unique journey
Local Healthwatch 
Healthwatch Bristol
Healthwatch South Gloucestershire
Date of publication 
Friday, 6 August, 2021
Key themes 
Booking appointments
Health inequalities
Holistic support
Information providing
Lifestyle and wellbeing

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
Primary research method used 
Engagement event
Structured interview
If an Enter and View methodology was applied, was the visit announced or unannounced? 
N/A

Details of health and care services included in the report

Social care services 
Day care (social care services)
Respite care

Details about conditions and diseases

Types of long term conditions 
Alzheimer’s disease or dementia
What type of pregnancy or maternity themes are included in the report 
N/A

Details of people who shared their views

Number of people who shared their views 
Not known
Age group 
Not known
Gender 
Not known
Ethnicity 
Not known
Sexual orientation 
Not known
Does the information include public's views? 
No
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
No
What was the main sentiment of the people who shared their views? 
Mixed

Outcomes and impact

Were recommendations made by local Healthwatch in the report? 
Yes
Does the information contain a response from a provider? 
Yes action has been taken or promised
Is there evidence of impact in the report? 
Yes
Is there evidence of impact external to the report? 
Not known
What type of impact was determined? 
Implied Impact

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.