The need to measure experience in dementia-friendly ways

“Ultimately, consistently asking people whether they are receiving the care they need and then improving things on the basis of what they tell you, will help patients feel more supported and better cared for.”

(p7 The Patient Experience Handbook, NHS Institute for Innovation and Improvement)
 

Research has identified that people with dementia often receive disproportionately poor or variable care

For example the Care Quality Commission's Cracks in the Pathway report, 2014  and in 2018 more than 1 in 5 services that provide dementia care were rated  as failing by the Care Quality Commission. This was a higher proportion of services failing than those that don’t provide dementia services (CQC, 2018). (Read more in Alzheimer's Society's Fix Dementia Care report, 2018.)

There are no cures for dementias, so the focus of health and care services has to be on living well with dementia. 

Commissioners and services need to use qualitative approaches in dementia-friendly ways, not just quantitative ones, for example, to deliver Universal Personalised Care. Wherever possible, this should involve the person with dementia directly.

There is an emerging body of evidence showing that using personalised approaches to set and measure patient outcomes is associated with both improved patient experience and benefits for services, such as reduced unplanned hospital admissions and reduced workloads for GPs. 

• 'What's it like to live in a care home? Findings from the Healthwatch Network' identified areas for improvement by analysing conversations and observations with residents, carers and staff in almost 200 site visits across 63 local authority areas in 2016-2017.
  • Healthwatch found the key factor for ensuring good care is to continually seek and act on the views of the service users.
• Around 75% of 93 care homes significantly improved their activities for residents following Healthwatch Surrey's 'My way, every day' report by using qualitative approaches to understand and improve service user experience.
• Social prescribing, with shared decision-making and co-produced care plans, can help people with dementia to maintain/develop skills, health and well-being and make better use of hospital  and GP services.

Lack of dementia-aware approaches may create barriers for people with dementia. Opportunities for services to identify how and why to improve may be missed.

Approaches such as the Friends and Family Test  and the GP Patient Survey   rely on abilities to:

• recall recent experience
• process new information, often in writing, and match recollections to multiple choice option questions that frame anticipated experience in someone else's words 
• keep up with people who don't have dementia in group discussions.

These can all exclude people with dementia from being able to express themselves meaningfully, if at all.

This is over and above a general picture revealed through the Declare Your Care campaign which found that 58% of around 7 million people who accessed health and care services in the last five years had concerns but had not raised them for reasons such as

• not knowing how to give such feedback
• fearing being perceived as a 'trouble maker'
• believing that speaking up would not make any difference

(research for CQC published in February 2019) . 

Some similar themes came up in our much smaller survey about experiences of people living with dementia about giving feedback to commissioners and health and care services.

Commissioners and services recognise the need to improve how they work 

Round-table discussions led by the Department of Health and Social Care in late 2017 with around 100 commissioners, providers and people affected by dementia, across all types of health and care settings identified the need for improvement. They found that good practice is patchy and not widely known about.

Our 2018 survey of commissioners, regulators and providers found that 1 in 2 said staff lacked skills or knowledge to engage people with dementia about their care. 1 in 4 lacked confidence working with qualitative data.

Link to our survey findings about missed opportunities and challenges of measuring experience of people with dementia as service users.

Our survey also found lots of interest in improving and helped us to find out about good practice, some of which is shared in this guide, to help raise awareness and support learning between organisations.

Declare Your Care campaign found that when people did raise a concern or complaint, 66% found their issue was resolved quickly, it helped the service to improve and they were happy with the outcome. CQC is now encouraging people who use services to share their experiences to enable services to improve.