Fostering a dementia friendly society is inclusive and accessible for all
In a dementia-friendly society people will be aware of and understand dementia, so that people with dementia can continue to live in the way they want to and in the community they choose.
For extra information, evidence and best practice please scroll down to the bottom of the page.
Regional offerings
Dementia Carers Expert Reference Group (DCERG)
Email: gmhscp.dementiaunited@nhs.net
Understanding the Law Around Dementia: a Guide for Carers and Partners of People Living with Dementia
This presentation is covering:
Mental Capacity
Advance Decisions to Refuse Treatment (ADRT)
Life Sustaining Treatment
Making a Will
Disclaimer: This document was prepared by students, is based upon the law as it stands as of 25th October 2022 and may be subject to change; it is intended as a guide to practice and does not amount to legal advice. It is not a substitute for legal advice upon the facts of any specific case. No liability is accepted for any adverse consequences of reliance upon it.
ESRC Presentations
DEMENTIA AWARENESS IN SOUTH ASIAN COMMUNITIES
INCREASING AWARENESS OF DEMENTIA IN SOUTH ASIAN COMMUNITIES
What we did
- Created a toolkit to support mosques and temples to become dementia friendly
- Co-produced awareness resources
- Delivered training sessions for South Asian communities to understand the signs and symptoms of dementia.
We worked with the Alzheimer’s Society to deliver some dementia awareness sessions to local groups who support people from South Asian communities.
We developed a set of ‘Through the eyes of dementia’ videos:
- A short video for mosques, temples, GP practices and on social media to help people understand some of the signs and symptoms of dementia
- A longer video for people who’ve been diagnosed with dementia. This video shows real life stories and explains the value of obtaining support from GPs, the Alzheimer’s Society, dementia nurses, social services, mental health trusts and voluntary and community sector organisations
For this purpose, we developed leaflets and posters:
- Provide information about the signs and symptoms of dementia, other causes of memory loss. Specifically, we offer information about the importance of living a healthy life and managing diabetes and other long term illnesses.
- Promote awareness of support services available in Manchester and tips for carers.
- Support places of worships to become dementia friendly.
- Raise awareness of the signs and symptoms of dementia.
It’s evident that there’s a need to continue engaging with these communities to provide dementia awareness. Additionally, we need to promote the materials created to address and reduce the stigma of dementia in South Asian communities. During the dementia awareness sessions a number of people from the South Asian communities expressed an interest in becoming a dementia champion.
Recommendations
- Follow up on the interest expressed in becoming a dementia champion with online training sessions being offered in partnership with South Asian voluntary, community and social enterprise organisations.
- Link in to existing South Asian communications channels (Asian Sound radio, local TV channels and mosques and temples) to promote awareness of symptoms of dementia and cultural support available.
- Continue to engage with South Asian communities to provide dementia awareness sessions, question and answer sessions and to promote the materials created
- Consider how culturally appropriate commissioned dementia services are and how they both understand concerns from the BAME community and respond to their needs
- Develop a communications plan to support the team to continue to share the resources.
Making-your-place-of-worship-Dementia-Friendly-temple
MHCC-Dementia-Posters-bengali
MHCC-Dementia-Posters-English
MHCC-Dementia-Posters-gujarati
MHCC-Dementia-Posters-hindi
MHCC-Dementia-Posters-urdu
National offerings
Dementia Friendly Hospital Charter
Weblinks:
https://www.dementiaaction.org.uk/assets/0003/9960/DEMENTIA-FRIENDLY_HOSPITAL_CHARTER_2018_FINAL.pdf
https://firebasestorage.googleapis.com/v0/b/johns-campaign-site.appspot.com/o/docs%2Fexternal%2Fdementia-friendly-hospital-charter-2020.pdf?alt=media
Dementia Friends
Weblink: https://www.dementiafriends.org.uk
NICE Dementia Guidance
Weblinks:
We have provided links to the NICE guideline for dementia and a further link is provided to guidance on how to delay or prevent the onset of dementia.
National Institute for Health and Clinical Excellence (NICE) NG16 (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset: https://www.nice.org.uk/guidance/ng16
National Institute for Health and Clinical Excellence (NICE) (2019) Dementia: assessment, management and support for people living with dementia and their carers: https://www.nice.org.uk/guidance/ng97
ADAPT South Asian Dementia Pathway
ADAPT South Asian Dementia Pathway toolkit consists of two sections. Roughly 25,000 people from ethnic minority communities live with dementia in the UK. The largest single grouping are people whose origins are from South Asian countries. People from South Asian communities are at greater risk of developing dementia. However, they are less likely to access all points of the dementia care pathway. They are more likely to present in crisis and/or at a later stage in this community.
There are also differences in how people from south Asian communities use dementia services. People from south Asian communities are more likely to miss or misinterpret their Dementia symptoms . Moreover, they often have less access to NICE recommended treatments including medication. They are more likely to rely on local, ethnic group-led community organisations for support. All of these differences mean that south Asians with dementia are often disadvantaged compared to their white counterparts.
Living with Dementia Toolkit - downloadable guide
Welcome to the Living with Dementia Toolkit for people with dementia and their carers. This set of resources is based on research, and the expert experiences of people with dementia and their carers. If you would like to learn more about how we developed them click here. These resources are here to:
- give you hope for the future
- inspire you through examples of real-life experiences
- offer ideas to help you live your life as you choose
Do you support someone living with dementia? Click here to read our Message for Carers.
Not everyone has access to the internet so we have produced a Guide to the Living with Dementia Toolkit that can be downloaded and printed off. We encourage peers, family members, and health and social care professionals to make use of this.
The Guide is available in English and in Welsh. It introduces the toolkit and the resources available. For the full experience of the toolkit, you need to look at the website. QR codes link you back to the website at various points. There is a How to use QR codes video. In this video, Steve Milton from Innovations in Dementia shows you how to use your phone camera to scan QR codes and open webpages. This is from the 'Virtual connections' resource https://livingwithdementiatoolkit.org....
We have some boxes of Guides for groups or services to distribute. Please contact IDEAL@exeter.ac.uk if you need these.
The UK network of dementia voices - DEEP:
The UK network of dementia voices brings together resources we have produced with DEEP groups, as well as resources they have produced independently.
It also includes resources we have produced for DEEP groups, to help them run more smoothly and more effectively.
Understanding dementia
What is dementia? In South Asian communities there is not a single word that describes dementia. Dementia is a set of symptoms that may include problems remembering, speaking and understanding. Dementia is a medical condition and not a natural part of ageing.
There is often a misunderstanding that dementia is a punishment for something that has happened in a past life or as a result of black magic. These beliefs often mean a delay in diagnosis but it is really important to get an early diagnosis so you and help with managing this condition.
Can we prevent dementia? We don’t yet understand dementia well enough to know if it can be prevented and researchers are still investigating how the disease develops. However, there’s good evidence that a healthy lifestyle can help reduce the risk.
Memory assessment If a GP is concerned about the possibility of dementia they may recommend a memory test. If needed they may make a referral to the memory assessment service. Interpreters can be requested for any GP or hospital appointment.
This leaflet is also available in alternative formats and additional languages. Please email: communicationsmanchester@nhs.net or call 0161 213 1750 for more information.
Dementia risk factors and prevention
Some things can increase your risk of getting dementia, including your age, genes and lifestyle. There are also ways you can reduce your risk.
There are also ways you can reduce your risk.
What to expect from health and care services
Guidance : After diagnosis of dementia: what to expect from health and care services
Details
This document is for anyone diagnosed with dementia and the people who care for them. It has details about what support they should get.It includes information about:
- what is in a care plan
- how health care and social care services can help
- support available to family and friends who are carers
- how to take part in research
Evidence
Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition.: https://www.dementiafriends.org.uk/ AND https://www.alzheimers.org.uk/get-involved/dementia-friendly-communities
Arts for dementia: Reawakening Integrated Arts Heritage: "Many low cost and small-scale changes around your premises can have a major impact on improving accessibility for people with dementia.
Dementia Friendly Hospital Charter 2018: "The Dementia-Friendly Hospitals Charter is an important initiative to improve the care patients with dementia receive and ensure carers and families are involved every step of the way. I want every single hospital to commit to becoming dementia-friendly."
Best Practice Resources
- Seven Steps to becoming a Dementia Friendly Pharmacy Practice (GM Dementia Pharmacy Framework): https://psnc.org.uk/bolton-lpc/wp-content/uploads/sites/67/2016/07/GM-Dementia-Pharmacy-Framework-Oct-16.pdf
- Bury: dementia friendly GP practices: http://psnc.org.uk/greater-manchester-lpc/wp-content/uploads/sites/118/2017/09/Dementia-Friendly-GP-Guidance-booklet.pdf.
- Greater Manchester's top tips on becoming a dementia friendly pharmacy: http://psnc.org.uk/greater-manchester-lpc/service-information/dementia-friendly-pharmacy-framework/
- Dementia Friendly environment checklist: http://psnc.org.uk/greater-manchester-lpc/wp-content/uploads/sites/118/2017/09/dementia_friendly_environments_checklist.pdf
- Guidance on writing dementia friendly information: http://psnc.org.uk/greater-manchester-lpc/wp-content/uploads/sites/118/2017/09/DEEP-Guide-Writing-dementia-friendly-information.pdf