Warwickshire Living Well with Dementia Survey 2019

Current estimates indicate that there are 8,500 people living with dementia in Warwickshire and, of these, 59.5 percent have received a diagnosis.  This is below the national target of 67.9 percent. 

Warwickshire’s ‘Living Well with Dementia Strategy 2016-19’ outlined local priorities and needs but is approaching the end of the period.

Between 11 February and 22 March 2019, we carried out engagement with people with dementia, their families and carers as well as the general public and professionals.

The engagement was intended to get a better understanding of what was important to people and what needed to improve regarding dementia care and support in Warwickshire.  This was needed to help refresh the current dementia strategy and inform future commissioning of dementia services. Our intention was to seek a wide range of views through different formats and channels.

There were 116 responses to the survey. The engagement also included face to face visits with dementia groups and services (eighteen in total), encompassing the different districts and boroughs of Warwickshire.  This included 275 people.  A presentation to a meeting of GPs about the dementia strategy was also delivered.

Out of this number certain issues were highlighted:

• The need for better information about accessing dementia support and advice;
• Better links and co-ordination of services for support after diagnosis;
• Better support for dementia carers in undertaking their role as a carer and accessing training;
• Recognition of community support groups and enhancing support for them, to make sure they do not duplicate each other but, equally, that they can be sustained as meaningful services;
• Improving access for people from BME backgrounds and people with vulnerabilities, such as learning disabilities or LGBT, and taking their needs into account in commissioning activities in the future. 

Sixty-nine percent of the survey respondents were female, which is similar to the proportion seen in national statistics which highlight the female prevalence of dementia. 

Six key themes were identified:

• Day Opportunities available in Warwickshire benefit people with all stages of dementia (not just early stage), providing them with opportunities to socialise and be stimulated;
• Professionals and providers highlighted a gap in that the service is not commissioned currently to provide personal care.  This means there is ‘a limited supply of dementia day care including personal care in the market’;
• People with dementia continue to use the service until they are unable to, either because they move to residential care or develop personal care needs;
• The routine and structure of Day Opportunities helps carers benefit from regular breaks and look after their own wellbeing;
• Communication between the service, service users with dementia and those caring for them is ‘robust and strong’.  These can help informal carers identify when the service user might need to see their GP;
• The service helps people with dementia maintain independence and wellbeing.

The full results of the engagement are publicly available in ‘Engagement Report: Dementia: February to March 2019’.

What are the next steps?

• The key themes highlighted are being used to inform the refresh of the current dementia strategy and actively used in the service delivery plan.
• Specific comments about individual services are being shared with those leading these services to inform operation and development (this includes partner agencies such as the Clinical Commissioning Groups and Coventry & Warwickshire Partnership Trust, service providers, carers and voluntary community groups);
• Two further surveys are being formulated, targeted specifically at customers of the current Dementia Day Opportunities and Dementia Navigator customers.  This is intended to collect detailed, specific service information that will be used to shape future services’ design and specification. 

The potential areas for development stem from the key themes which were evident from the engagement exercise:

• Information and advice;
• Support following diagnosis;
• Support for carers;
• Recognition and support for the community;
• Improving access and service uptake from people with BME backgrounds or those with a barrier to accessing services.

The refreshed strategy will also celebrate the successes achieved to date, including:

• Dementia services and support are well utilised in general and routinely used;
• The wide range of vibrant and diverse community support services;
• High commitment from staff and volunteers providing enthusiastic, personalised service for people living with dementia and their carers;
• Service users value the support received and benefit from the positive impact on them.