Top picks: Key patient safety resources for people with dementia

Summary

At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That's why we created the hub; providing a space for people to come together and share their experiences, resources and good practice examples. 

Dementia is an umbrella term for a number of diseases that affect the brain, with Alzheimer’s disease its most common cause. We have picked a range of resources and reflections about keeping people with dementia safe in health and care settings, and when considering medication choices.

Content

1 Alzheimer's Society: Checklist for possible dementia symptoms

This checklist has been developed by the Alzheimer’s Society to allow patients to check symptoms that could be a possible sign of dementia. Endorsed by the Royal College of General Practitioners (RCGP), it is a simple tool to help patients and their families clearly communicate their symptoms and concerns to a GP or other healthcare professional.

2 Seeing the unseen: Rethinking dementia diagnosis

Across 2024 and 2025, Alzheimer’s Research UK surveyed more than 500 people affected by dementia and over 160 healthcare professionals to understand the realities of diagnosis. This report shares findings from this process and considers what works, what gets in the way, and what needs to change. 

3 Health and social care support for people with dementia

The Care Quality Commission (CQC) looked at people's experiences of living with dementia when using health and adult social care services, including the experiences of families and carers. It sets out the main themes that influence whether an experience is good or poor, and what health and care services are doing to improve these experiences. CQC will use the findings in this report to help shape their work to define what good care looks like for people with dementia and inform the next phase of CQC’s Dementia Strategy.

4 Keeping patients with dementia safe: an interview with Alison Keizer and Fran Hamilton

When people with dementia enter a new healthcare setting, the environment may be confusing and difficult to navigate. They may be unable to use their usual coping strategies and have difficulty communicating their needs and concerns to staff. This can present a wide range of risks to their safety while accessing care.

In this interview, Alison Keizer, trust-wide Dementia Lead, and Fran Hamilton, Occupational Therapist and Deputy Dementia Lead at Sussex Community NHS Foundation Trust, describe the patient safety issues affecting patients with dementia and suggest how they can be supported to reduce these risks.

5 World Alzheimer Report 2025: Reimagining life with dementia – the power of rehabilitation

This report from Alzheimer's Disease International explores the important topic of dementia rehabilitation, combining expert essays and real-world case studies from multiple countries globally to examine how the concept is defined and implemented, as well as practical considerations of how to best adapt rehabilitation practices for people living with dementia in different contexts. 

6 National Audit of Dementia: Spotlight Audit in Memory Assessment Services 2023/24

This report examines waiting times, access to assessments, treatment, and post-diagnostic support for people with dementia in memory assessment services. The results indicate that there is still a great deal of variation between services in key results such as average waiting time for patients, the proportion of patients diagnosed with dementia, and the provision of post diagnostic support and therapy.

7 The role of integrated care systems in improving dementia diagnosis

The Alzheimer’s Society commissioned The King’s Fund to explore the development of Integrated Care Systems (ICSs) through the lens of dementia diagnosis—to consider what opportunities ICSs present to approach dementia differently and to improve diagnosis rates by doing so. The research team explored enablers and barriers to improving dementia diagnosis through interviews with stakeholders and people affected by dementia in three case study ICSs.

8 Alzheimer's Society: 'This is me' leaflet

This simple leaflet was developed by the Alzheimer's Society for anyone living with dementia, or experiencing delirium or other communication difficulties. It provides a central place where those closest to the person can fill in key information about them, such as their preferred name, cultural background, routines and likes and dislikes. The leaflet can then be shown to health and social care professionals in new and unknown settings to help them better understand the person and deliver care that is tailored to their individual needs.

9 Dementia UK: Making the home safe and comfortable for a person with dementia

Dementia can have a significant impact on a person’s daily life, including how well they function within their home. Memory issues or problems recognising and interpreting the objects around them can cause the person frustration or create safety issues. Dementia UK have produced a leaflet with tips and guidance on how to make the home more safe for someone with dementia.

10 Alzheimer's Society: Tips for carers - questions to ask the doctor about antipsychotics

Antipsychotic drugs may be prescribed for people with dementia who develop symptoms such as aggression and psychosis. This webpage from the Alzheimer's Society provides information on the prescription of antipsychotic medications for people living with dementia. It describes their potential side effects and includes a list of helpful questions that carers should ask healthcare professionals before the person they care for is prescribed antipsychotic medication.

11 Assessment, diagnosis, care and support for people with dementia and their carers: A national clinical guideline

These national clinical guidelines from Health Improvement Scotland, the first to be published in nearly 20 years, provide recommendations on the assessment, treatment and support of adults living with dementia. It calls for greater awareness of pre-death grief for people with dementia, their carers and their loved ones, as they fear the loss of the person they know. To accompany the guidelines, a podcast has been produced by Health Improvement Scotland speaking to professionals, including Dr Adam Daly, Chair of Healthcare Improvement Scotland’s Guideline Development Group and a Consultant in old age psychiatry, and Jacqueline Thompson, a nurse consultant and the lead on pre-grief death for the guideline.

12 Alzheimer’s Society: Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland

A formal diagnosis of dementia can help people living with the condition and their families gain a better understanding of what to expect and help to inform important decisions about treatment, support and care. This report from the Alzheimer's Society highlights the barriers to accessing a timely and accurate dementia diagnosis and advocate for practical changes and tangible solutions to overcome them.

13 The current state of dementia diagnosis and care in England

The current dementia care system remains fragmented, underfunded, and difficult to navigate, leaving many individuals and families unsupported. In response to these systemic challenges, Care England, in partnership with Dementia Forward and care providers, conducted a national survey in January 2025. This initiative aimed to capture the experiences of people living with dementia, their families, and care staff. The findings highlight significant gaps and inequalities in the dementia care pathway and inform a set of urgent policy recommendations.

14 Raising awareness of normal pressure hydrocephalus: an often misdiagnosed condition

Normal pressure hydrocephalus (NPH) is a progressive neurological condition that comes under the dementia umbrella. In NPH, the cerebrospinal fluid-filled ventricles within the brain expand and distort the surrounding tissues. This process causes the neurological symptoms of NPH. Unlike other forms of hydrocephalus, NPH does not result in significantly raised intracranial pressure. NPH is often misdiagnosed as it is similar to neurodegenerative conditions such as Parkinson’s disease and other causes of dementia, such as Alzheimer's disease. However, unlike these other conditions, if diagnosed early there is an effective treatment that can significantly slow disease progression and potentially improve, or even reverse, symptoms in some people. 

15 The training gap: a hidden injustice in dementia care and how to fix it

This report from Alzheimer's UK reveals huge gaps in dementia training across social care: half of staff receive just one to two hours of dementia learning despite 70% of care home residents living with the condition. It argues that these shortfalls in training are leaving social care staff unprepared, unsupported, and putting people with dementia at risk of inadequate care. It calls on the government to build a bold and ambitious dementia plan, which includes mandatory dementia training for care staff.

16 Alzheimer's Society: Unlocking the door to dementia diagnosis and treatments

Systems designed to diagnose and support people with dementia are struggling to keep pace, with delays, inequalities and missed opportunities far too common. Too many people have a poor experience, wait too long for a diagnosis and receive less treatment and support than clinical guidance says they should. Everyone with dementia has the right to an early and accurate diagnosis and the best available treatments. Alzheimer's Society’s two 'Unlocking the door' reports lay out a stark reality – and a clear programme of reform for England, Wales and Northern Ireland.  

For more resources, take a look at our Dementia area of the hub.

Do you have a resource or story to share about dementia or a related condition? Could your insights or experiences help improve patient safety? Leave a comment below (join the hub for free first) or contact us at [email protected].