Improving dementia diagnosis: widening the focus

If you had dementia, would you want to know?

If you’re like me, your answer to this question probably depends on the answer to another – what kind of support would be available to me and my family post- diagnosis?

There are, of course, many reasons to seek a dementia diagnosis if you’re worried. For individuals and families, a diagnosis can help to make sense of the condition. There may be relief in naming the reason why a loved one is behaving differently. And knowing something about what the future holds can encourage us to think practically about how best to cope and to plan for the future  – particularly now that there may be new drug treatments available for some. Thinking ahead can also remind us to make the most of the here and now.  

A diagnosis can also provide benefits for the health and care system. Integrated care systems (ICSs) and NHS England can use diagnostic data to identify targets for improvement, something that has proved helpful in driving up and monitoring diagnosis rates. There is also increasing evidence that earlier diagnosis can lead to savings on long-term care costs, for example, where people are supported to continue to live independently.

But do these kinds of targets encourage us to see diagnosis as an end in itself?

Earlier this year, the Alzheimer’s Society asked The King’s Fund to explore the role of ICSs in improving dementia diagnosis. As part of this project, we spoke to system leaders, clinicians, and people with lived experience of dementia. During these conversations, the message we often received was this: what happens before a diagnosis and what happens after it are as important as the diagnosis itself.

As many people who have been affected by dementia will know, noticing memory loss in a loved one and caring for them as the disease progresses are profound and difficult experiences that sometimes long precede the moment of diagnosis – and very often stretch far beyond it.

In part, this is why improving dementia care is distinctively challenging, because pre- and post-diagnosis experiences can span long periods of time and require collective action from multiple organisations and sectors. However, since ICSs were created to enable the provision of holistic care within a whole-system approach, they provide a real opportunity to approach dementia care differently.

System leaders and clinicians who took part in this project suggested several interventions that ICSs could deliver  to improve the experiences of individuals and families, both before a diagnosis and after it.

For example, delivering public awareness campaigns to help people spot the early signs and symptoms of dementia to facilitate more timely diagnoses, and investing in dementia navigator roles, which provide essential support to people affected by dementia to access the numerous health, care and other services that they may benefit from.

Strategies to improve dementia care need to improve all parts of the pathway, including pre- and post-diagnosis experiences. Doing so could significantly improve the quality of life for those living with dementia and support those – often unpaid carers – who care for them.

There are likely to be additional returns on these investments, too. If improved pre- and post-diagnosis experiences equip people with the knowledge to seek timely advice and make clear there are various forms of support available for those affected by dementia, people may feel more inclined to seek a diagnosis in the first place.

I know this would encourage me to take that step. What difference might it make for you?