Living with dementia in Wakefield District

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Summary of report content

Healthwatch Wakefield conducted an investigation into how prepared family members or carers feel when their loved one begins to exhibit behavioural challenges and identified gaps/good practice for dementia support. Informal semi-structured interviews were used alongside one focus-group session. 19 carers were spoken to and health professionals working with carers and people living with dementia were also spoken to.

The report found that people waited a long time for a dementia diagnosis. Information, support and diagnosis provided by specialists were valued the most. It was felt that some professionals view dementia as less important than other terminal diseases. Variable information about dementia and support was reported by carers. It was found that respite care does not always meet people's varying needs. Carers are negatively impacted by the cost of caring, which impacts their health and wellbeing, in turn. Support groups are available but carers find them difficult to access to to varying responsibilities. Compassionate and supportive health professionals were valued, but not all experienced it. People do not know how social care works for those with dementia, nor is it felt that the social services understand dementia. It is confusing when care givers are not the same, leading to different information being passed on and negative behaviours. Admiral Nurses are valued and people would like to see more of them. There are mixed opinions on advanced care planning (ACP) by both carers and healthcare professionals.

A range of recommendations were made including GP should not charge for the production of medical reports; services need to review some of the terminology used and services on offer for people living with early onset dementia; help carers with their financial burden, such as a passport scheme; and to promote health and wellbeing.

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General details

Report title 
Living with dementia in Wakefield District
Local Healthwatch 
Healthwatch Wakefield
Date of publication 
Wednesday, 31 July, 2019
Type of report 
Report
Key themes 
Access
Communication between staff and patients
Consent to care and treatment
Cost of services
Diagnosis
Holistic support
Information providing
Integration of services
Lifestyle and wellbeing
Quality of care
Referrals
Service delivery organisation and staffing
Staff attitudes
Staff training
Waiting times and lists for treatment
Other information of note about this report 
Carers
Healthwatch reference number 
Rep-4696

Methodology and approach

Was the work undertaken at the request of another organisation? 
No
Primary research method used 
Focus group
Structured interview
How was the information collected? 
Meeting
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

Primary care services 
GP practice
Secondary care services 
Dementia
Social care services 
Home care / domiciliary care

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 
19
Age group 
All
Gender 
All
Ethnicity 
All
Specific ethnicity if known 
All
Sexual orientation 
Not known
Does the information include public's views? 
Yes
Does the information include carer's, friend's or relative's views? 
Yes
Does the information include staff's views? 
Yes
Types of health and care professionals engaged 
All care professionals
Does the information include other people'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? 
No
Is there evidence of impact in the report? 
No
Is there evidence of impact external to 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.