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Required

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Ambition

Fostering a dementia friendly society is inclusive and accessible for all

A dementia-friendly society is a place where people with dementia are understood, respected and supported.

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)

Working with Dementia United to ensure the carers voice is central for influencing policy and commissioning for dementia care and support.
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.
The resources were co-produced with local voluntary and community sector groups including: Communities for All, Indian Senior Citizens Group, Bangladeshi Women’s Organisation, North Manchester Black Health Forum, Ethnic Health Forum, Together for Dementia and representatives of temples and mosques; Shree Radha Krishna Mandir Temple, Khizra Mosque, Victoria Mosque and Didsbury Mosque.
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
Both videos are available in: English with no subtitles, English subtitles long, English subtitles short. Also the videos are available in  Urdu, Hindi, Gujarati, Bengali, Punjabi, BSL.
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.
Evaluation results
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-mosque
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

The Dementia-Friendly Hospital Charter was launched in 2015 as the second phase of the Right Care initiative.The charter outlines the high level principles that a dementia-friendly hospital should provide, together with notes for self-assessment and recommended actions they could take to fulfil them. There has been a revised version as a result of COVID-19.
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

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. You can attend a face to face, virtual session or watch online the video. There are resources to access and you can search for Dementia Friends training/groups in your area.
Weblink: https://www.dementiafriends.org.uk

NICE Dementia Guidance

This guideline brings together all the research and evidence which covers assessment, diagnosis, treatment and support. It is for people at risk of developing dementia, people who are referred for assessment, people living with dementia as well as being for family and friends and health and social care staff and commissioners. It aims to improve care by making recommendations on standards people should expect to receive from their assessment, care and support as well as on training.
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 sets out to create an online toolkit of culturally appropriate assessments and interventions. The toolkit supports people from South Asian communities across the dementia care pathway. Starting in January 2021, the aim of the study is to identify elements of the toolkit that can be drawn upon by commissioners, clinicians and care teams to meet the needs of people from South Asian communities who are living with dementia.
ADAPT South Asian Dementia Pathway toolkit consists of two sections.

1. The dementia care pathway


This section deals with three stages of the dementia care pathway: dementia awarenessdementia diagnosis and assessment; and interventions for people living with dementia and their families. 

2. Working better together

Good dementia care often involves large organisations like the NHS and smaller voluntary or community-based organisations working together. Where these collaborations work well, they enable the resources of health and social care professionals to be used effectively by taking into account the language, spiritual, and cultural needs of different communities. However, we know that it is not always easy for organisations to work together. Formal and voluntary organisations can have very different approaches and priorities, and this can create difficulties and tensions. One aim of our study was to identify what these tensions were, and to find ways of overcoming these. 
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

Understanding dementia Leaflet is also available in alternative formats and additional languages. Please email: communicationsmanchester@nhs.net or call 0161 213 1750 for more information.
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.
There are different types of risk factors for dementia, including medical, lifestyle and environmental factors. It is possible to avoid some risk factors, while others cannot be controlled.
Around 1 in 4 people aged 55 years and over has a close birth relative with dementia. Find out what part genes play in dementia and how genetics can affect the risk of developing the condition.
Although getting older is the biggest risk factor for dementia, evidence shows there are things you can do to help reduce your own risk. These include keeping active, eating healthily and exercising your mind.

Air pollution has been a focus of several studies on cognitive impairment and dementia risk. There is evidence that tiny air pollution particles can enter the brain, but at this time we can’t say if they play a role in the development of dementia. There is a strong case for further research into the effect of air pollution on brain health.

Alcohol consumption in excess has well-documented negative effects on both short- and long-term health, one of which is brain damage that can lead to Alzheimer's disease or other forms of dementia.

There are different types of antioxidant, each of which has a slightly different role. We explain the general term 'antioxidants' and provide guidance around their potential benefits in relation to dementia.
 

Brain training includes activities to challenge the brain, such as crosswords, Sudoku puzzles and bespoke computer games. Here we discuss the evidence and the claims made by commercial game providers.

We explore the effect of caffeine, and by extension coffee, to establish whether there is a link between this and developing dementia.

Research suggests a possible connection between high cholesterol and dementia.

Though studies have been done on the possibility of cinnamon preventing dementia, clinical trials are needed to assess its effect on people with dementia. Cinnamon is not recommended as a prevention or treatment for Alzheimer's disease or dementia as it can be toxic. Some of the extracts of cinnamon may warrant investigation to try and establish new treatments.

The genetics behind Alzheimer's disease and other forms of dementia is complex, and DNA testing kits like 23andme cannot tell the complete story about a person's risk of developing the condition.

Some research does suggest traumatic brain injuries may increase the risk of dementia. However, there is still much more research to be done to understand this complex issue, particularly in relation to contact sports like football (soccer) and rugby.

A lifelong approach to good health is the best way to lower your risk of dementia. Learn more about the effects of high blood pressure and the risk factors of dementia.

Learn about hormones and other reasons women may be more likely to develop dementia than men.

Several infections have been suggested to increase risk of Alzheimer's disease, but the evidence behind it is not clear cut.
Evidence shows that a diet rich in fruit, vegetables and cereals, and low in red meat and sugar could help reduce dementia risks.

The ability of metals from food or cookware to cause Alzheimer's disease is a regular concern in the news. Here's the evidence behind the presence of metals such as copper, zinc, iron and aluminium.
It is often said that fish is 'brain food', and you may have read the speculation that omega-3 in the diet can help reduce your risk of dementia by improving heart and brain health.

Of all the lifestyle changes that have been studied, taking regular physical exercise appears to be one of the best things that you can do to reduce your risk of getting dementia.

People with dementia often have issues with sleep with their memory seemingly worse after a bad night. However, the evidence is unclear on whether poor sleep is a risk factor for dementia.

There is strong evidence that smoking can increase your risk of dementia. Not everyone who smokes will get dementia, but stopping smoking is thought to reduce your risk down to the level of non-smokers.
Turmeric and dementia
There is currently limited evidence from research studies in people to suggest that turmeric, which is a type of spice, can prevent or treat dementia.

What to expect from health and care services

A guide to the support people should get from local services in England if they or someone they know have been diagnosed with dementia.

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
Information to help local health and social care commissioners put the right support in place is on the Social Care Institute for Excellence website.
Published 17 May 2018

Evidence


WHO Global action plan on dementia: "Global target 2.1: 100% of countries will have at least one functioning public awareness campaign on dementia to foster a dementia inclusive society by 2025. A dementia-friendly society possesses an inclusive and accessible community environment that optimizes opportunities for health, participation and security for all people, in order to ensure quality of life and dignity for people with dementia, their careers and families. This includes developing programmes, adapted to the relevant context, to encourage dementia-friendly attitudes in the community and the public and private sectors that are informed by the experiences of people with dementia and their carers. It will target different community and stakeholder groups, including but not limited to: school students and teachers, police, ambulance, fire brigades, transport, financial and other public service providers, education and faith-based organizations, and volunteers "

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


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