Investment needed to help tackle inequalities in dementia diagnosis - Fiona Carragher

At Alzheimer's Society, we are buoyed by seeing the number of GP assessments return to pre-pandemic levels, but it’s concerning that overall, diagnosis rates are still stagnating since reaching a five year low during the pandemic.

We know there are an estimated 900,000 people living with dementia in the UK, including more than 76,000 across Yorkshire and Humber. But we also know that’s not the full picture. We now need to diagnose 25,244 people to get back to the national target of 66.7 per cent.

We also know that rurality, deprivation and ethnicity can all be significant barriers to diagnosis. Taking ethnicity as an example – a 2022 Alzheimer’s Society report revealed that people of South Asian heritage are more likely to develop dementia compared to the general population, but getting a dementia diagnosis if you are South Asian is often much more difficult.

Diagnostic tools can have both cultural and language barriers – with memory test questions often geared to people who’ve lived in the UK all their life, and translation services scarce.

At Alzheimer’s Society, we’re playing our part by translating information, advice and support into eleven different languages, including British Sign Language, and last year piloted a resource page tailored for Punjabi-speaking communities, tackling culturally specific issues including stigma.

But the healthcare service needs more investment to reach every community and break down these complex barriers.

With new breakthrough dementia treatments coming rapidly down the track, tackling diagnosis can’t wait. After 20 years with no new Alzheimer's drugs, we now have two potential new treatments that seem able to slow the progression of the disease, and another 141 drugs in clinical trials. Based on last week’s early results, donanemab demonstrated less decline in everyday activities such as driving, doing hobbies and managing finances.

And the most recent projections suggest lecanemab could delay the progression to the moderate or severe stages of Alzheimer’s disease by two to three years. This is a huge step forward in increasing the quality of life of people with Alzheimer’s.

But it is impossible to give someone a drug if you don’t know they have the disease. People will not be able to access these drugs early, when they work best, if we don’t remove the barriers to timely and consistent dementia diagnosis.

There are lessons we can learn from other conditions – for example when multiple sclerosis drugs arrived that could give someone more than seven extra years before they have to use a wheelchair.

The introduction of these drugs catalysed a radical change in how MS is diagnosed and treated within the NHS.   This is exactly what needs to happen for dementia.

Fiona Carragher is director of research and influencing at Alzheimer’s Society.