Dementia Inequalities: Are We Measuring the Wrong Things?

Dementia Inequalities: Are We Measuring the Wrong Things?

https://link.springer.com/article/10.1186/s12939-025-02601-4

This recent report on inequalities in dementia care argues that people living with dementia still face major barriers in accessing diagnosis, support, social care, and long-term help. The report talks about stigma, fragmented services, delays in diagnosis, and postcode lotteries in support provision. None of this will come as a surprise to families living with dementia every day. Most already know the system can feel confusing, inconsistent, and difficult to navigate.

But perhaps the bigger question is whether we are focusing on the things that matter most in the first place.

Much of dementia policy still centres around “timely diagnosis” as if getting a diagnosis quickly automatically improves someone’s life. Of course, diagnosis can help people make sense of symptoms, plan ahead, access benefits, and prepare for the future. But families often ask a very simple question afterwards: “What happens now?”

And too often, the honest answer is: not very much.

The reality is that current dementia medications have a limited effect for most people. They may help some symptoms for a period of time, but they do not stop the disease from progressing. So, for many families, what matters far more than how quickly someone is diagnosed is what support they actually receive afterwards.

·       Can they still get out into the community?

·       Can they continue doing things they enjoy?

·       Do they feel safe, understood, and valued?

·       Is there support for the family carer exhausted from caring?

·       Is someone helping the family member struggling emotionally?

·       Are staff skilled enough to respond with patience rather than medication?

·       Will the person be treated with dignity when they become distressed, frail, or near the end of life?

These are the things families remember.

Most people living with dementia are not asking for complex medical interventions. They want ordinary human things: meaningful relationships, familiar routines, comfort, reassurance, companionship, purpose, good food, laughter, fresh air, and people who genuinely know them. Families want practical support, continuity, honesty, and to feel they are not battling the system alone.

Real-world interventions are often far simpler and more human than policy discussions suggest. What makes the greatest difference to people living with dementia and their families is usually consistent carers who genuinely know the person, access to dementia-friendly community groups, and support to continue participating in activities that bring meaning and enjoyment, such as music, gardening, walking, reminiscence, and social connection. Equally important are environments that reduce distress rather than create it, family carers receiving support before they reach a crisis point, and staff having enough time to sit, listen, reassure, and build relationships, rather than simply rushing through tasks within a routine schedule. Alongside this, good palliative and end-of-life care that prioritises comfort, dignity, and compassion remains one of the most important, yet often overlooked, aspects of dementia support.

Yet these are often the very areas that remain underfunded or overlooked because they are harder to measure than diagnosis targets and waiting times.

This is where inequalities in dementia care become most visible. It is not simply about who receives a diagnosis first. It is about who receives support afterwards. Who has access to good care homes, strong community support, dementia-trained staff, respite services, and compassionate end-of-life care — and who is left struggling without them.

For many families, the true measure of dementia care is whether the person was helped to live well for as long as possible and cared for with dignity and humanity throughout the journey.

Every article I publish reflects my personal views, informed by the evidence available at the time of writing. My aim is to support honest, compassionate and informed discussion, not to provide individual medical advice.

Kevin Hewlett MBE MSc (Dementia)

kevin.hewlett@haleplace.co.uk

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