Summary
Dementia is the biggest health and care issue facing our society today. Around one million people live with the condition in the UK and prevalence is set to rise to 1.4 million by 2040.[1]
The focus of this year’s World Patient Safety Day is "Safe care for noncommunicable diseases” and highlights the need to reduce preventable harm for people living with long-term conditions by emphasising the importance of early diagnosis, coordinated care, a skilled workforce and meaningful involvement of people with lived experience. This is also reflected in the World Alzheimer’s Month campaign this September: "The earlier you know, the more you can do: A dementia diagnosis matters", which seeks to tackle the persistent stigma and discrimination surrounding dementia by shining a spotlight on the timely and important issue of early diagnosis.
In this blog, Bella Smith, a Policy Officer at Alzheimer’s Society, reflects on what safe care means for people living with dementia.
This blog is part of a series on noncommunicable diseases, in support of World Patient Safety Day 2026 (WPSD26).
Content
UN Member States recognise dementia as a leading noncommunicable disease and a leading cause of mortality globally.[2] The condition is also the UK’s biggest killer.[3] Yet too often, people living with dementia, their families and carers are experiencing avoidable issues and safety risks at every stage of their dementia journey, from recognising symptoms and receiving a diagnosis to accessing treatment, care and ongoing support.
Recent reports published by Alzheimer's Society highlight how gaps in dementia diagnosis, treatment and social care workforce training are increasing the risk of avoidable harm for people living with dementia and their families throughout the care pathway.
Patient safety starts with early and accurate diagnosis
The World Health Organization's (WHO) guidance[4] for this year's World Patient Safety Day highlights the importance of early detection and accurate diagnosis in reducing harm, a message echoed by this year's World Alzheimer's Month theme. Yet for people affected by dementia in the UK, getting an early and accurate diagnosis remains a significant challenge.
Early and accurate diagnosis brings many benefits, yet too many people are missing out. Across England, Wales and Northern Ireland, over a third of people with dementia have no diagnosis; the chances of getting diagnosed is also significantly influenced by where a person lives, as well as their socioeconomic and ethnic background.[1] Too many people wait too long for a diagnosis; it takes an average of 3.5 years from symptom onset to getting a diagnosis, rising to 4.1 years for young onset dementia.[1]
Our recent report, Unlocking the Door to Diagnosis and Treatments, found that significant barriers remain throughout the dementia diagnostic pathway. These barriers affect people's ability to access not only a diagnosis, but also the care, support and emerging treatments that increasingly depend on early and accurate diagnosis.
Evidence shows that early diagnosis supports safer care, by decreasing the chance of emergency, unnecessary hospital admission.[1] We know that there are at least 15,000 A&E visits annually from undiagnosed patients, that people living with dementia visit their GP between 1.5 and 3 times more frequently a year than individuals of the same age without the condition, and 1 in 6 hospital beds are occupied by someone living with dementia.[5] Later diagnosis means less time and opportunity for people to plan, access treatment and to benefit from support, meaning people are more likely to fall into crisis.
Even when a diagnosis is made, people do not always receive the information they need to ensure adequate support. Alzheimer's Society's 2025 Lived Experience Survey found that fewer than half of respondents said they were told what type of dementia they had and given further information about it.[6] When people do not fully understand their diagnosis, it becomes harder to participate in decisions about their care, manage their symptoms and navigate available support. This isn’t just a quality of care issue, it also affects patient safety.
“I had a lack of professional support after my diagnosis. I wasn’t getting very far with seeing anyone in the NHS. It’s not that easy to navigate. I had nothing.” A person living with dementia.
Safe care depends on continuity, support and access to treatment
Patient safety does not end at diagnosis. People living with dementia need coordinated care and support across multiple settings, often involving primary care, memory services, hospitals, social care and community services. Yet fragmented pathways and inconsistent follow-up can mean people fall through the cracks.
Satisfaction with the availability of healthcare is relatively low, and less than 1 in 3 people believe dementia healthcare is easy to access.[6] The majority of people who have been offered any drug and/or non-drug treatments have found them beneficial. Despite this, access to these types of treatments is varied, with over a third of those with dementia not having been offered a non-drug treatment, and 1 in 5 not having been offered a drug treatment.[7]
As new disease-modifying treatments (DMT) emerge, ensuring safe and equitable access to diagnosis and ongoing monitoring will become even more important. If a DMT were approved for use in the NHS today, there would be significant barriers preventing people from accessing treatment and benefiting from its disease-slowing effects due to delays in diagnosis, gaps in follow up and variation in service provision and infrastructure.
“Regardless of whether she has got dementia or not, she deserves dignity and the treatment she got was pretty bad. Listen to patient’s families, because they know their relative best.”
“All I got was a leaflet off the doctor, it just helps with what the person will go through in stages, but it doesn’t help the person who’s caring.” Carer for someone living with dementia.
Baristas receive more training than dementia staff
People living with dementia are estimated to make up around 70% of people living in care homes.[8] Yet, our recent Dementia Training Gap audit found significant variation in the quality and consistency of dementia training across adult social care; only 39% of available dementia training was designed to deliver the knowledge and skills needed by social care staff who have regular contact with people living with dementia.[8]. Dementia is a complex condition, and care staff who directly provide support to people with dementia need the necessary knowledge and skills to deliver high-quality, safe support and care.
No professional should be allowed to care for a person living with dementia without adequate training. Despite this, there is currently no mandatory requirement for social care staff to undertake dementia-specific training in England.
The good news is that the solutions to improve dementia training in social care already exist. The workforce, regulatory and training frameworks needed to raise standards are largely in place, and we are encouraged by the Prime Minister's recognition of both the scale of the challenge facing social care and the need for reform. Introducing mandatory dementia training, aligned with the Dementia Training Standards Framework,[9] would help ensure care staff have the skills, knowledge and confidence to provide safe, high-quality care. It would also support wider ambitions to professionalise the social care workforce, improve consistency of care and raise standards across the sector.
"Training is so important as we [people living with dementia] too are human beings." A person living with dementia.
Making dementia a patient safety priority
The theme of this year's World Patient Safety Day recognises that people living with noncommunicable diseases face unique risks throughout their care journey. World Alzheimer's Month serves as a timely reminder that people affected by dementia face many of these same challenges, making patient safety a critical issue across the dementia pathway.
If we are serious about delivering "Safe care for life", we must ensure people living with dementia can access early and accurate diagnosis, appropriate treatment, and support and care from a workforce equipped with the right skills and knowledge to ensure that this disease no longer devastates lives. This is why we are calling on the government to:
Introduce an 18-week referral-to-diagnosis standard for dementia, including starting a care plan and treatment where appropriate, and an elimination of waiting list backlogs.
Prepare the system for earlier diagnosis and disease-modifying treatment through investment in the diagnostic workforce and supporting infrastructure.
Introduction of a legal requirement for care providers to provide mandatory high quality, best-practice dementia training for the adult social care workforce.
References
About the author
Bella Smith is a Policy Officer at Alzheimer’s Society.
Alzheimer’s Society is the UK's leading dementia support and research charity. We give vital support to those who need it, fund ground breaking research, and campaign to improve experiences. We're leading the way to create a future where dementia no longer devastates lives, bringing together people from all the spheres of life dementia touches. It will take a society to beat dementia.
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