Understanding the challenges to obtaining a dementia diagnosis and what needs changing

With new treatments on the horizon that can slow the effects of Alzheimer’s disease, there is a pressing need to ensure dementia diagnosis happens early and accurately. In the UK, an estimated 315,000 people currently live with dementia, but without a formal diagnosis. ARUK wanted to surface the voices at the heart of this challenge; those affected by dementia and the healthcare professionals supporting them.

Participants

503 people affected by dementia, including those with a diagnosis, those with symptoms, and carers of these people, and a further 148 healthcare professionals working across dementia diagnosis pathways.

Methods

Online qualitative survey, free-text questions.

Impact

An in-depth understanding of people’s experiences which enriched and amplified ARUK’s 'Dementia Unseen' campaign calling for fair, fast and accurate diagnoses for everyone who needs one.

Delivered on behalf of:

What we did

Co-designed two qualitative surveys informed by the learnings and advice gathered from members of ARUK’s Lived Experience Involvement Group over multiple workshops
Heard from over 650 people over two data collection activities using primarily free-text question types to prompt real narratives and reflections
Disclosed stories gathered from the first survey to healthcare staff in the second survey to hear their reflections on these views and experiences

Key insights

This research highlighted urgent challenges in diagnostic pathways and laid out five priority areas for change:

1

Earlier, faster and more accurate diagnosis

2

Consistent and integrated diagnosis

3

Improved pre- and post-diagnostic support

4

Investment in people and infrastructure

5

Improved access to advanced diagnostics

Improvement in action

These two surveys gave ARUK rich qualitative insights into the realities of people’s experiences of dementia diagnosis; from the perspectives of people affected by dementia and healthcare practitioners working in dementia.

The stories shared allowed ARUK to produce a report summarising these and detailing the changes people want to see to improve the dementia diagnosis pathway.

The report and promotion of its findings helped to support both ARUK’s ‘Delivering Dementia Diagnosis: A blueprint for the future’ report and their Dementia Unseen campaign.

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