Top picks: 12 key resources about patient safety 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 12 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 Alzheimer's Research UK: Tipping Point—The future of dementia

Dementia remains the biggest killer in the UK and is on track to be the nation’s most expensive health condition by 2030. This report by the charity Alzheimer's Research UK sets out a series of calls for party leaders ahead of the next general election, all of which are underpinned by an urgent recommendation for greater investment in dementia research.

3 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.

4 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.

5 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.

6 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.

7 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.

8 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.

9 Blog - Inappropriate prescribing during a pandemic: dementia and antipsychotics

This anonymous blog written for the hub describes the recent experience of a patient with young-onset dementia being prematurely prescribed antipsychotics while living at a care home. 

Written by a family member, the blog describes the family’s concern about the medication being prescribed when there were obvious non-drug based alternatives to pursue, including 1:1 support and further investigations. They also express concern that family members are increasingly unable to have a say in their loved one’s care and treatment. The writer describes how the personality of their loved one has changed dramatically, for the worse, since being on antipsychotics, saying, “He became a shell of who he was in a very short amount of time.”

10 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.

11 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.

12 World Alzheimer Report 2024: Global changes in attitudes to dementia

This report explores attitudes toward dementia, examining how the condition is perceived and understood by society and the stigma that still surrounds the condition. The report delves into the results of an international survey analysed by the London School of Economics and Political Science, consisting of more than 40,000 responses from people living with dementia, carers, health and care practitioners, and the general public from over 166 countries and territories.

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].