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.
For extra information, evidence and best practice please scroll down to the bottom of the page.
Carers Charters and Toolkits for Greater Manchester
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
Dementia Wellbeing Plan for Greater Manchester; Dementia United
Dementia Carers Expert Reference Group (DCERG)
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.
- 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.
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.
Telephone: 020 7378 4999
Dementia Carers Count
Telephone: 0800 88 6678
NHS Continuing Health Care
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
NHS England 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.
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
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
Think Local Act Personal (TLAP)
Telephone: Call: 03000 683 000 between the hours of 08:30 – 17:30 Monday to Friday
ADAPT South Asian Dementia Pathway
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
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.
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: firstname.lastname@example.org 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.
What to expect from health and care services
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 here
Admiral 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