I am supporting someone with dementia

 

 

The tabs below offer more information and advice for people living with dementia and those supporting someone with dementia.

If you have any suggestions, or are aware of any additional useful content or information please contact gail.cardy@westsuffolkccg.nhs.uk

 


Older People’s Mental Health & Dementia Newsletter

COVID-19 Vaccination Issue

Welcome to the third edition of the East of England Older People’s Mental Health and Dementia Newsletter. Given the current circumstances around COVID-19 in the UK and the NHS efforts to vaccinate millions in the coming months, this special issue will exclusively feature guidance and resources relating to the vaccination process for COVID-19 and dementia.

Please let us know if there is any specific content you would like to see included in future, or any further resources on COVID-19 vaccination which could be circulated via our mailing list. Please forward this on to any networks and colleagues you think may be interested. You can sign up by emailing ben.adams4@nhs.net. Previous editions will be available on the Older People’s Mental Health page on the East of England Mental Health Programme Workspace. If you have not registered to join the NHS Futures Collaborations platform, you will be asked to do so . This is an easy process and Ben can provide support if necessary, at the above email.

Resources

Standard Operating Procedure for vaccination in community settings
NHS England has produced a standard operating procedure (SOP) which applies to all providers contracted to provide local vaccination services in community settings such as GP practices, community pharmacies, care homes, non-NHS sites and personal homes. Providers should ensure the services are accessible to all members of the community and take steps to improve access and reduce inequalities, including accounting for the needs of the local population.

Department of Health & Social Care resource on the vaccine and health inequalities

This resource was produced by the Joint Committee on Vaccination and Immunisation (JVCI) and outlinestheimpactonandimplicationsforhealthinequalitiesintheprovisionofCOVID-19


Dementia UK’s Useful Tips on the COVID-19 Vaccine Dementia
UK have produced a brief and easy-to-read two-page resource to prepare friends and family of those living with dementia for the vaccination process. This includes easy phrases and tips on communicating about the vaccination process, keeping disruption and distress to a minimum and seeking proper consent.

Dementia UK Guide on Giving the COVID-19 Vaccine to Someone with Dementia
https://www.dementiauk.org/giving-covid-19-vaccine-to-someone-with-dementia/

Carers, relatives and registered Lasting Power of Attorney (LPA) for Health and Welfare may be required to support relatives with dementia in getting the COVID vaccine. This brief online guide includes information on gaining consent for the vaccine, respecting the person’s independence, and supporting them before, during and after the vaccine.

Dementia UK FAQ on COVID  https://www.dementiauk.org/get-support/coronavirus-covid-19/questions-and-answers/

This set of frequently asked questions is regularly updated to support those living with dementia and their families and carers, including information on the vaccination programme, different living arrangements and how to deal with communication issues and isolation.

National Mental Capacity Forum webinar on the Mental Capacity Act and COVID vaccination in care homes
The National Mental Capacity Forum, a joint initiative by the Department of Health & Social Care and the Ministry of Justice, have organised a series of webinars on COVID-19 including one held on the 18th December on Mental Capacity Act and vaccinations in care homes. It aimed to share knowledge and reinforce good practice in consenting patients for COVID vaccinations and address practical issues faced within the care home environment.

Essex Autonomy Project FAQs on the Mental Capacity Act

The Essex Autonomy Project has published a brief frequently asked questions guide to the Mental Capacity Act including details on how to assess capacity and when a family member or caregiver is able to refuse the vaccine on behalf of a patient.

Alzheimer’s’ Society guide on consent to COVID-19 vaccination

This brief guide outlines the issues surrounding the COVID-19 vaccination, dementia and the Mental Capacity Act 2005 which protects people who lack the capacity to make decisions on medical care.

Books Beyond Words accessible picture-books about COVID

Charity Books Beyond Words, who create accessible picture-books for people with intellectual disabilities and conditions like dementia, have released several leaflets relating to COVID-19 for free. This includes ‘Having a Flu Jab’ which could be adapted and may be useful in having conversations about the COVID-19 vaccination.

Department of Health & Social Care guidance on the Mental Capacity Act

This set of guidance from the Department of Health & Social Care clarifies how different forms of COVID-19 care, including testing, vaccination and life-saving treatment, should be conducted in relation to the Mental Capacity Act 2005 in different settings.

Social Care Institute for Excellence guides on mental capacity and COVID-19

The Social Care Institute for Excellence has published a series of guides on mental capacity in the context of the COVID-19 pandemic including on the implications of the Mental Capacity Act and the Deprivation of Liberty Safeguards (DoLS) and the making of best interest decisions.

Mencap Easy Read Guides

The learning disability charity Mencap produce a set of easy-read guides on COVID-19 including alert levels, self-isolating, keeping safe from scams and the recent vaccine. These may be useful for those with dementia and can be found at this link.

Those on the circulation list for this newsletter will also be sent info on how to attend NHSE/I regional events. If you are not on this list, contact Ben Adams to be added or for more information: ben.adams4@nhs.net.

This newsletter is produced by the East of England Regional Clinical Network for Older People’s Mental Health & Dementia. Please contact Ben if there is any content that you would like to see in future editions. ben.adams4@nhs.net

Disclaimer: The content of this bulletin does not necessarily reflect the views of NHS England & Improvement but is an information service for staff interested in the Old People’s Mental Health & Dementia Clinical Network. All links from this bulletin are provided for information only. A link does not imply endorsement. We do not accept responsibility for the sites linked or the information displayed there.

Local

Dementia Together continues to operate, available seven days a week for continuous support for those worried about memory issues, people living with dementia, and their carers. Dementia Together Navigators can complete a detailed assessment over the phone, or by video, offering support, education and a listening ear.  Call: 08081 688 000    Or email

The service also provides carers with information regarding a range of creative activities that they can engage in with people living with dementia; linking service users to local community networks, which are offering help with shopping, collecting prescriptions and welfare calls.  Dementia Together is also offering four free virtual meet-ups a week starting from 4th May. These meet-ups will give people time to chat, exercise the brain, get creative and most importantly, have fun.      

Monday, 12-12.30, lunch and chit chat
Wednesday, 11-11.40, managing your wellbeing
Wednesday, 14.00-14.40, reminiscing and crafty moments
Friday, 11.00-11.40, quiz of the week

Suffolk Dementia Forum Facebook page

The Suffolk Dementia Forum brings together those living with dementia, their carers, voluntary and statutory services. It offers a place to have your voice and share your concerns especially at the moment, as well as highlighting the services across Suffolk that can support you through your individual journeys. If you would like to join this group please email gail.cardy@westsuffolkccg.nhs.uk

Suffolk Dementia Covid-19 Sub-Group brings together members of the Suffolk Dementia Forum to ensure that those living with dementia, their carers, voluntary sector, providers and other statutory providers.

There are conversations across Suffolk on a weekly basis via Microsoft Teams every Monday afternoon from 2 – 3pm beginning Monday 11th May. 

We want to hear your voice and ensure that everyone contributes to develop services and working in partnership during this challenging time and in the future.  Please email gail.cardy@westsuffolkccg.nhs.uk if you are interested in becoming involved.

 

Halesworth Dementia Carers Fund 

 

National

Alzheimer’s Society resources

Support from Dementia Connect  

Coronavirus and supporting a person with dementia at home

 

Easy Read versions of useful information

Coronavirus Easy-Read Online

Advocacy (Easy Read)

 

Carers

Suffolk Family Carers:

For advice, information, and support for family carers

  • Information Hub – Running as normal and can be reached via email (hello@suffolkfamilycarers.org ), phone 01473 835477 or live chat. If calling, please note we are experiencing a higher volume of calls than normal. The information Hub will be available by Live Chat and Email only between 5pm & 8pm on Tuesdays
  • Carers Assessments  – Undertaking virtual / telephone assessments to discuss and explore your needs as a carer
  • 1:1’s – Appointments will be carried out by telephone or video conversations.
  • GP Drop-in Sessions – Drop-in sessions at all GP Surgeries are cancelled until further notice
  • Community Connecter Motorhome: Cancelled until further notice
  • Programmes and Workshops – Cancelled until further notice
  • Moving & Handling – Cancelled until further notice
  • Talk & Support – Running as normal.
  • The View Drop-in Centre – Closed to visitors until further notice
  • Reception Unit 9 – Closed to visitors until further notice
  • Family Carer Groups – Future groups cancelled until further notice. Alternative Virtual groups are being established where possible

Although we unable to provide face to face sessions our friendly staff are available to provide information, advice and guidance or just offer a reassuring voice through this difficult time.   Please contact our Information Hub on 01473 835477, email us on hello@suffolkfamilycarers.org or use our live chat facility found at the bottom of our website

 

Emotional Wellbeing and Mental Health

First Response 24/7 Mental Health crisis line is a 24/7 helpline offering immediate advice, support and signposting for people with mental health difficulties. Tel: 0808 196 3494.

Care and Support

Adult Social Care (Customer First): Tel: 0808 800 4005    or  contact by Email 

Home but Not Alone Service

The telephone number for those in need of practical help is freephone 0800 876 6926 and will be staffed from 9am to 5pm, seven days a week. 

Health advice and information

The West Suffolk Community Speech and Language Therapy service (SALT)

Communicating with people with dementia and memory problems

Eating, drinking and swallowing problems in dementia

Dementia Together continues to operate, available seven days a week for continuous support for those worried about memory issues, people living with dementia and their carers. Dementia Together Navigators can complete a detailed assessment over the phone, or by video, offering support, education and a listening ear.

The service also provides carers with information regarding a range of creative activities that they can engage in with people living with dementia; linking service users to local community networks, which are offering help with shopping, collecting prescriptions and welfare calls. 

Call: 08081 688 000       Email: SRYC.DementiaTogether@nhs.net

 

Suffolk Family Carers:

Information Hub – Running as normal and can be reached via email (hello@suffolkfamilycarers.org), phone 01473 835477, or live chat. If calling please note we are experiencing a higher volume of calls than normal. The information Hub will be available by Live Chat and Email only between 5pm & 8pm on Tuesdays

Carers Assessments  – Undertaking virtual / telephone assessments to discuss and explore your needs as a carer

1:1’s – Appointments will be carried out by telephone or video conversations.

GP Drop-in Sessions – Drop-in sessions at all GP Surgeries are cancelled until further notice

Community Connecter Motorhome: Cancelled until further notice

Programmes and Workshops – Cancelled until further notice

Moving & Handling – Cancelled until further notice

Talk & Support – Running as normal.

The View Drop-in Centre – Closed to visitors until further notice

Reception Unit 9 – Closed to visitors until further notice

Family Carer Groups – Future groups cancelled until further notice. Alternative Virtual groups are being established where possible Although we unable to provide face to face sessions our friendly staff are available to provide information, advice and guidance or just offer a reassuring voice through this difficult time.   Please contact our Information Hub on 01473 835477, email us on hello@suffolkfamilycarers.org or use our live chat facility found at the bottom of our website

Halesworth Dementia Carers Fund 

 

Other useful information for carers

Leeds and York Partnership NHS Foundation Trust “Caring for Someone with Dementia at Home: A resource pack for carers”

Communicating with people with dementia and memory problems

Coughing and choking advice 

Choking advice from St Johns Ambulance

 

 

Having a back-up or contingency plan setting out what will happen to the person you care for in the event of an emergency (e.g. care breakdown), is strongly recommended.  See Planning for emergencies and Family carers emergency plan for more information around the importance of, and how to arrange, for the completion of a Family Carers Emergency Plan.

In addition, the Herbert Protocol is a national scheme used by Suffolk Police and other agencies which encourages family carers and care providers to compile useful information in advance which could be used in the event of a vulnerable adult going missing.  Please see the following web page for a leaflet explaining the benefits, and the form template under advice for carers, family and friends on Keep well and active

Herbert Protocol leaflet

Herbert Protocol form

 

 

Dementia Support UK: 

‘A listening ear and invaluable support at the time of greatest need’.  Care home professionals have welcomed a new service for people living with dementia in care homes as enquiries to Dementia Support UK: Connect, Consult demonstrate that lockdown measures are having a detrimental effect on the health and wellbeing of people living with dementia, their carers and loved ones. Urgent support is needed.

Funded by Innovate UK, and provided by HammondCare, this free service provides immediate support with a 24/7 online enquiry and referral system for relatives, carers and health professionals. It offers an opportunity to access extra support and expert guidance to help carers cope with behaviours and symptoms which worsened during the pandemic. 

Read more about this newly launched service for people living with dementia hailed as invaluable support from care industry

 

CMAS

From the w/c 18 May 2020 CMAS will be taking referrals again, this is based on  NHSE advice and guidance. Please follow the referral protocol and restriction criteria below

Community Memory Assessment Service referral protocol during COVID-19 restrictions

  • We will accept referrals even if routine bloods cannot be performed at this time and will ask that these be completed at a later date.
  • We have no access to CT/MRI head scans currently so cannot complete our full assessment.
  • Therefore, we would suggest that if patients are reporting mild memory loss without a change in their day to day functioning that they be referred at a later date when the service has fully reopened.
  • For those patients with a more moderate presentation and definite loss of functionality we may be able to provide an unspecified dementia diagnosis without a CT/MRI scan.
  • We are currently conducting telephone assessments and will be introducing video assessments in the near future, with hopefully some clinics to follow.

 

Dementia Together

Dementia Together have not stopped taking referrals for those with memory concerns, living with dementia and their carers the CCG encourages GPs to refer and to this service for additional emotional and wellbeing support

  • Dementia Together will continue to be operating within the restrictions of the Coronavirus outbreak and the UK Government, Public Health England guidelines
  • The helpline will continue to be available 7 days a week for continuous support throughout this difficult time.
  • Dementia Together Navigators will also be able to complete a detailed assessment over the phone offering support, education and a listening ear to you throughout this difficult time.

Call Free on: 08081 688 000

Monday to Friday, 9am - 6pm.

Saturday, Sunday & Bank Holidays, 10am - 4pm.

 

GENERAL RESOURCES

COVID-19 Advice note for Care Providers supporting people experiencing dementia (Suffolk County Council 07/05/2020)

East of England Region Older People’s Mental Health & Dementia Resources to support systems in responding to Covid

Managing behaviour that challenges 

Prevent deconditioning through being Active at Home

A new booklet for older adults available to local authorities and partners to prevent deconditioning through being Active at Home

Social Care Institute for Excellence, Dementia in Care Homes and COVID-19, Supporting Residents, Supporting Carers and Supporting Homes. This quick guide aims to help carers better support those living with dementia during the coronavirus (COVID-19) pandemic. The guide covers clinical situations to illustrate some challenges, including understanding signs of COVID-19, helping residents with confusion, managing behavioural challenges as well as end-of-life care. Please also see answers to frequently asked questions within SCIE dementia care homes

Speech and Language Therapy

General dementia awareness information for volunteers and others

The Dementia Friends website contains lots of useful information to promote a general understanding and awareness of dementia.  This includes access to online videos and sessions to become a Dementia Friend.

Volunteers

Innovations in Dementia Community Interest Company (CIC) has produced four short videos to inform volunteers about supporting people with dementia which can be downloaded for free under ‘tips to share with a volunteer’. They are for the many thousands of volunteers who are supporting people living in the community, whether by keeping in touch or delivering shopping and prescriptions. Many of these volunteers may not have met people living with dementia before and may be nervous about how to communicate and build a relationship. Innovations in Dementia CIC have also produced some useful checklists for volunteers.

Webinar – Volunteer Toolkit

Dementia friendly resources

              A useful list of resources supporting Dementia Friendly Communities from the Alzheimer's  Society. 

              Small changes can have a major impact on improving accessibility for people with dementia.
              See the Dementia Friendly Physical Environments Checklist

 The Alzheimer’s Show Autumn Webinars

Please click on the above hyperlink to access details and register for several free webinars taking place over Autumn around dementia.  Recordings of each webinar will be available for those who are unable to make the live dates.

 

The SSP’s website has recently been refreshed and contains a wealth of information for professionals, volunteers and individuals in response to the pandemic, as well as clear signposts to many local organisation’s information. Issues like reporting and getting support for domestic abuse, to important changes in legislation, and supporting individuals and volunteers.  You can access our COVID-19 pages here.

How to spot and respond to signs of abuse and neglect in adults - The safeguarding framework and intro video

For Practitioners and Providers: Safeguarding training is still available through online learning sessions on CPD Online. Please search for safeguarding courses to book on.

Suffolk County Council safeguarding information: Protecting people at risk of abuse

Social Care Institute for Excellence guidance: Safeguarding adults with dementia during the Covid-19 crisis and Safeguarding in faith-based organisations

Training information (tailored to volunteers): Community Action Suffolk training COVID-19

Primary Care guidance: NHS Specialty Guide Virtual-Working and Coronavirus

GMC UK ethical-guidance/ethical-hub/remote-consultations