Management and support strategies that may be used for complex advancing symptoms of dementia are considered and discussed as part of collaborative shared decision making with carers and family members.
You are engaged as an equal partner in the planning of care strategies that may need some considered discussion and thought; particularly if your loved one is presenting with complex advancing symptoms of dementia. You are offered a package of support as a carer which recognises your personal experiences and offers a person centred approach.
For extra information, evidence and best practice please scroll down to the bottom of the page.
For extra information, evidence and best practice please scroll down to the bottom of the page.
Regional offerings
Carers Charters and Toolkits for Greater Manchester
We believe all carers have a right to be respected, valued and supported, equally in their caring role, as experts for their cared for and as individuals in their own right.
Weblinks:
Carers charter: https://www.gmhsc.org.uk/wp-content/uploads/2018/04/Carers-Charter-FINAL.pdf
Greater Manchester working carer toolkit: https://sccdemocracy.salford.gov.uk/documents/s16450/Item%209%20-%20Appendix%20B%20-%20GM%20Working%20Carers%20Toolkit%201%20-%204%204%2019.pdf
Weblinks:
Carers charter: https://www.gmhsc.org.uk/wp-content/uploads/2018/04/Carers-Charter-FINAL.pdf
Greater Manchester working carer toolkit: https://sccdemocracy.salford.gov.uk/documents/s16450/Item%209%20-%20Appendix%20B%20-%20GM%20Working%20Carers%20Toolkit%201%20-%204%204%2019.pdf
Delirium Toolkits in Greater Manchester; Dementia United
The Greater Manchester delirium toolkits were designed for health and social care staff to use to help them identify and manage delirium in people over the age of 18 and not under the influence of drugs or alcohol. They are based on national evidence and include resources and training for both professionals and people with delirium and their families.
Weblink: https://dementia-united.org.uk/delirium/
Weblink: https://dementia-united.org.uk/delirium/
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
Age UK
Age UK is the country's leading charity dedicated to helping everyone make the most of later life. Providing advice, support, information, fundraising, local services
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year
Weblink: https://www.ageuk.org.uk
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year
Weblink: https://www.ageuk.org.uk
Alzheimer’s Society
The Alzheimer’s Society provides reliable and up to date information to help you with every aspect of living with dementia.
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.
Weblink: https://www.alzheimers.org.uk/
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.
Weblink: https://www.alzheimers.org.uk/
Carers UK
Caring will affect us all at some point in our lives. We'll be here for you when that happens. With your help, we can be there for the 6,000 people who start looking after someone each day.
Telephone: 020 7378 4999
Weblink: https://www.carersuk.org/help-and-advice
Telephone: 020 7378 4999
Weblink: https://www.carersuk.org/help-and-advice
Dementia Carers Count
Provide free carers courses, support and connecting carers up with a wider network, offer a virtual carers centre.
Weblink: https://dementiacarers.org.uk/
Weblink: https://dementiacarers.org.uk/
Dementia UK
Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide Admiral Nurses, who work with family members and carers in all care settings along with a helpline for family members or carers who would welcome accessing advice and support.
Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/
Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/
NHS Continuing Health Care
NHS continuing healthcare is for adults. Children and young people may receive a "continuing care package" if they have needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.
The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice on NHS continuing healthcare.
Telephone: Beacon free helpline 0345 548 0300
Weblink: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/
The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice on NHS continuing healthcare.
Telephone: Beacon free helpline 0345 548 0300
Weblink: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/
NHS England Dementia
Dementia is a key priority for both NHS England and the Government.
NHS England's work includes:
NHS England have developed a Dementia Well Pathway which outlines standards across all aspects of the Pathway from prevention, diagnosing, supporting, living and dying well.
Weblinks:
The NHS England dementia-well-pathway can be accessed here: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf
You can access the NHS England dementia programme of work here: https://www.england.nhs.uk/mental-health/dementia/
- Developing an access and waiting time standard for dementia, so people with dementia have equal access to diagnosis as for other conditions; setting the national average for an initial assessment
- Achieving and maintaining the dementia diagnosis rate. NHS England agreed a national ambition for diagnosis rates that two thirds of the estimated number of people with dementia in England should have a diagnosis with appropriate post-diagnostic support
- Post diagnostic care and support; as there has been substantial progress on diagnosis, NHS England will focus on improving post-diagnostic support
NHS England have developed a Dementia Well Pathway which outlines standards across all aspects of the Pathway from prevention, diagnosing, supporting, living and dying well.
Weblinks:
The NHS England dementia-well-pathway can be accessed here: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf
You can access the NHS England dementia programme of work here: https://www.england.nhs.uk/mental-health/dementia/
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
Personalised Care in the NHS
Personalised care is based on ‘what matters’ to people and their individual strengths and need.
Weblinks:
https://www.england.nhs.uk/personalisedcare/
https://www.england.nhs.uk/wp-content/uploads/2019/02/comprehensive-model-of-personalised-care.pdf
Weblinks:
https://www.england.nhs.uk/personalisedcare/
https://www.england.nhs.uk/wp-content/uploads/2019/02/comprehensive-model-of-personalised-care.pdf
Think Local Act Personal (TLAP)
TLAP are a national partnership of more than 50 organisations committed to transforming health and care through personalisation and community-based support. Personalised care and support planning (PCSP) is a systematic process based around 'better conversations' between the person and their health and social care practitioners. The overall aim is to identify what is most important to each person for them to achieve a good life and ensure that the support they receive is designed and coordinated around their desired outcomes.
Weblink: https://www.thinklocalactpersonal.org.uk/personalised-care-and-support-planning-tool/What-is-personalised-care-and-support-planning/
Weblink: https://www.thinklocalactpersonal.org.uk/personalised-care-and-support-planning-tool/What-is-personalised-care-and-support-planning/
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
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
Admiral nurses:
Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. You can find out more about Admiral nurses hereAdmiral nurses provide the following support:
- Specialist holistic bio-psycho-social assessment
- Psycho-social interventions
- Family focussed interventions
- Managing and identifying co-morbidities and complex needs
- Person-centered care planning
- Developing coping strategies
- Non-pharmacological management of behavioural and psychological symptoms of dementia. As well as:
- Managing transition
- Building resilience in families
- Symptom management
- Crisis prevention
- Relationship support
- Promoting independence
- Managing grief, loss and bereavement
- Enabling access to life outside caring
Best Practice Resources
The use of therapeutic lying in dementia care:
Evidence on sleep and dementia: "There is no evidence that medication for sleep in dementia is effective and considerable evidence for harm—ie, earlier death, increased hospitalisation, and falls—exists." See article from the Lancet here
National Institute for Health and Care Excellence quality statement on advanced care planning can be found here