People living with dementia have a care plan created or reviewed at least once every 12 months.
The Memory Assessment Service, your GP, or a dementia advisor offer you and your carer an appointment to develop a personalised dementia care plan, which is a strength-based document that agrees goals, identifies support needs, develops and implement action plans, and monitors progress. The personalised dementia care plan focusses on ‘What really matters to me’ and those around them affected by dementia.
Your care plan may discuss the following:
- dementia treatment and review of this
- what post diagnosis support you may be interested in and what is on offer locally
- access to psychosocial interventions
- peer support networks
- keeping physically active, smoking cessation, reducing alcohol intake, maintain a healthy weight, keep cholesterol and blood pressure at a healthy level
- advanced care planning
- finance issues
- legal issues including planning to undertake lasting powers of attorney (health and welfare, finance)
- discussion about driving safely and planning ahead in relation to driving assessments
- other conditions that you may develop and where to obtain support in the future
- information on delirium
- contingency planning and preparing for vulnerabilities and risks
Your care plan should be reviewed regularly, at least once a year, but it could every six months or whatever frequency is best for you. You can also request to have your care plan reviewed when your or your carer's needs change.
For extra information, evidence and best practice please scroll down to the bottom of the page.
Regional offerings
Advance statement about your wishes
The aim is to provide a guide to anyone who might have to make decisions in your best interest if you have lost the ability to make or communicate decisions.
What does it cover?
It can cover any aspect of your future health or social care. This could include:- how you want any religious or spiritual beliefs to be reflected in your care
- where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice
- how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
- practical issues, for example who will look after your dog if you become ill
By writing your advance statement down, you can help to make things clear to your family, carers and anybody involved in your care.
You can write it with support from relatives, carers, or health and social care professionals.
Is an advance statement the same as an advance decision?
No. An advance decision (also known as a living will, or advance decision to refuse treatment) is a decision you can make now to refuse specific treatments in the future.An advance decision is legally binding, as long as it meets certain criteria.
Read more about advance decisions to refuse treatment
Who makes an advance statement?
You write an advance statement yourself, as long as you have the mental capacity to make these statements.Mental capacity is the ability to make decisions. Sometimes, people do not have mental capacity. This can be for a number of reasons, including illness.
Visit GOV.UK to find out about creating a lasting power of attorney, and the Mental Capacity Act.
Is an advance statement legally binding?
No, an advance statement is not legally binding, but anyone who's making decisions about your care must take it into account.How does an advance statement help?
An advance statement lets everyone involved in your care know about your wishes, feelings and preferences if you're not able to tell them.Does it need to be signed and witnessed?
You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.Who should see it?
You have the final say in who sees it. Keep it somewhere safe, and tell people where it is, in case they need to find it in the future.You can keep a copy in your medical notes.
Thinking about your wishes
Dying Matters has information on talking about dying. This includes ideas for starting the conversation, letting people know your wishes, and things to think about.Find out more about planning ahead
Weblink: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/Advance-Care-Planning-contact-details-in-each-GM-locality.pdf
Dementia Wellbeing Plan for Greater Manchester; Dementia United
The Greater Manchester dementia wellbeing plan promotes personalised planning conversations with people living with dementia and carers about their needs and wants. The plan ensures an improved standard of care planning for people living with dementia and also facilitates sharing across the system. It will be available as a standardised plan which can be accessed and shared digitally between practitioners; as well as being available from the website for people affected by dementia to be using when having person centred care plan reviews
Weblink: https://dementia-united.org.uk/dementia-wellbeing-plan/
Weblink: https://dementia-united.org.uk/dementia-wellbeing-plan/
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
Email: gmhscp.dementiaunited@nhs.net
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
MSNAP Memory Assessment Service Standards
The Royal College of Psychiatrists have a national accreditation programme for Memory Services against key standards. The website outlines the standards and the process.
Weblink: https://www.rcpsych.ac.uk/improving-care/ccqi/quality-networks-accreditation/memory-services-national-accreditation-programme-msnap/msnap-standards
Weblink: https://www.rcpsych.ac.uk/improving-care/ccqi/quality-networks-accreditation/memory-services-national-accreditation-programme-msnap/msnap-standards
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
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
Healthwatch
Healthwatch is your health and social care champion. If you use GPs and hospitals, dentists, pharmacies, care homes or other support services, we want to hear about your experiences. As an independent statutory body, we have the power to make sure NHS leaders and other decision makers listen to your feedback and improve standards of care. Last year we helped nearly a million people like you to have your say and get the information and advice you need.
Telephone: Call: 03000 683 000 between the hours of 08:30 – 17:30 Monday to Friday
Email: enquiries@healthwatch.co.uk
Weblink: https://www.healthwatch.co.uk/your-local-healthwatch/list
Telephone: Call: 03000 683 000 between the hours of 08:30 – 17:30 Monday to Friday
Email: enquiries@healthwatch.co.uk
Weblink: https://www.healthwatch.co.uk/your-local-healthwatch/list
Living with Dementia Toolkit - downloadable guide
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 lower down the page.
This can be downloaded here: https://livingwithdementiatoolkit.org.uk/home/living-with-dementia-toolkit-downloadable-guide/
Eating and Drinking well: supporting people living with dementia
This training film is the outcome of a two year research project by Bournemouth University, funded by the Burdett Trust for Nursing. It highlights to carers how to improve their practice and develop their knowledge and skills to provide better eating and drinking for people living with dementia. It is linked with a workbook that is available from Bournemouth University National Centre for Post Qualifying Social Work (http://www.ncpqsw.com/publications/)
Films can be accessed here: https://www.youtube.com/watch?v=dlYPTTibTO8&t=28s
Universal Principles for Advance Care Planning (ACP)
The Universal Principles for Advance Care Planning has been jointly published by a coalition of the partners listed above, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021).
universal-principles-for-advance-care-planning
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.
This section deals with three stages of the dementia care pathway: dementia awareness; dementia diagnosis and assessment; and interventions for people living with dementia and their families.
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.
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 awareness; dementia 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.
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.
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.
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
A guide to the support people should get from local services in England if they or someone they know have been diagnosed with dementia.
It includes information about:
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
Published 17 May 2018
Evidence
NHS England Dementia: Good Personalised Care and Support Planning: "Personalised Care and Support planning is a crucial element in delivering improved care for all people living with dementia, and supporting their families and carers."
Royal College of Psychiatrist (2020) MSNAP Standards for Memory Service #154: "Every patient has a written care plan or care and treatment plan, reflecting their individual needs and preferences. Staff members collaborate with patients and their carers (with patient consent) when developing the care plan."
NHS England (2017) Implementation guide and resource pack for dementia care: "A core component of person-centred dementia care is the support of a named coordinator of care and the presence of a flexible, up-to-date care plan. This person should be allocated based on personal need, and may come from various settings, for example primary care, the voluntary sector or memory assessment services. Named coordinator of care: key role:
Best Practice Resources
Young onset dementia pathway: Diagnosis and support for people with young onset dementia and their families - https://www.youngdementianetwork.org/resources/young-onset-pathway/#:~:text=The%20young%20onset%20dementia%20pathway,tailored%20to%20meet%20those%20needs.
Dementia Wellbeing Plan: The Greater Manchester dementia wellbeing plan promotes personalised planning conversations with people living with dementia and carers about their needs and wants. The plan ensures an improved standard of care planning for people living with dementia and also facilitates sharing across the system. It will be available as a standardised plan which can be accessed and shared digitally between practitioners. - https://dementia-united.org.uk/dementia-wellbeing-plan/