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older lady with dementia looking at the camera

Dementia diagnosis: what next?

Getting a dementia diagnosis can be a big shock, and it can be hard to know what to do next. Take a look at this guide to find out what support you should receive.
The essential information you should get after a dementia diagnosis
  • Your type of dementia and how it will affect you.
  • Any further tests, treatment, activities or therapies that might help you.
  • Who will provide your care and how to contact them, including the professional who will coordinate your care.
  • Support groups and charities that can help you.
  • How dementia can affect your driving and what you need to do.
  • How your employer should support you if you work (or are looking for work).
  • Any research studies you could take part in.

This information should be explained to you and given to you in writing. You can also ask for it in a format you understand. If you don’t need this information straight away, you can ask for it later on.

What else should you talk about with your GP?

  • Consent – Do you agree to services sharing information about you? Who can they share information with, and what are you willing for them to share?
  • Information – Do you know who to contact for more advice if your needs change?
  • Future contact – You may not need any help or further appointments now. If that is the case, would you like to be contacted again and if so, when?

Next step checklist

It’s not just health and care support you need to think about when diagnosed with dementia. To help you, Dementia UK has created a checklist to follow, which includes information on benefits and discussing plans and wishes with your family.

Dementia UK checklist

What support have you received? 

Have you or loved one had a dementia diagnosis? We want to hear your experience of dementia care and support – good and bad. We have the power to make sure NHS leaders and other decision makers listen to and act on your feedback. So, if you’ve got a story to share, tell us!

Planning your care

Now

After your dementia diagnosis, your GP should direct you to services that can give you more information and support. You should also be given the name of a professional who will coordinate any care and support you might need.

The future

Thinking ahead can feel overwhelming, but planning care can help make sure people know your wishes for the future. When you’re ready for this, you should be offered support and information to discuss your options.

Support for carers

Anyone with caring responsibilities for a person with dementia is entitled to a Carers’ Assessment. Their local Authority will carry this out. The Assessment will look at the impact of caring for a person with dementia and what support is needed. Take a look at Dementia UK’s guidance on Carers’ Assessments for more information.

As a carer, it is essential to think about your health and wellbeing. It is a significant adjustment, so you should take a look at the options available to you. These can include:

  • Training
  • Support
  • Advice

More information

The information on this page is from The National Institute for Health and Care Excellence guide for people with dementia and their family and carers. Take some time to read the guide in full to understand better the support available to people with dementia and their carers.

Read full guidance

Visit our dementia health page for information on local services

Dementia activities and support in West Northumberland

Activities and support for older people and those affected by dementia

The latest edition of ‘Activities and Support in West Northumberland’ for older people and those affected by dementia is out now. This is a comprehensive guide to support groups, classes, film screenings and cafes, singing classes, advice services, physical and sporting activities and lots more including virtual events, telephone friendship, music and radio programmes.

Although some of the activity and support groups listed in this booklet are not able to meet face-to-face at the moment due to the pandemic, several are continuing to provide ongoing support either online, over the phone or through the post. Please contact individual activity providers for up-to-date information.

View and download the digital booklet.

Singing group

Singing for the Brain

Alzheimer’s Society Northumberland is running virtual singing sessions for people in the early to moderate stages of dementia and their carers.

Singing for the Brain sessions use singing to bring people with dementia together in a friendly and stimulating activity using Zoom to connect with others. The activity has moved online due to the current pandemic.

Singing for the Brain is based around the principles of music therapy and singing. In between songs the group chats and reminisce about the songs and what they meant to them. The sessions are run by experienced leaders and volunteers along with the support of a member of staff.

The sessions are open to all Northumberland residents and take place online via Zoom on the first and third Wednesday of every month from 2.00pm to 3.00pm.

Upcoming dates

  • 5 May
  • 19 May
  • 2 June
  • 16 June
  • 7 July
  • 21 July

If you would like to attend, email: northumberland@alzheimers.org.uk or call: 01670 813 255 for the Zoom link and joining instructions.

Care Home Visits in Northumberland

Our public forum on care home visits in November produced some really interesting and insightful discussion. We talked about how people are keeping in touch with loved ones in care homes during the pandemic, the effect on those in the homes, particularly those with dementia, and the effect on relatives, plus what would help, going forward and throughout the winter to make the situation easier.

Further to the issues raised at the forum, where people told us they were unclear on what care homes can or can’t do in terms of visits, we asked Liz Morgan, Director of Public Health in Northumberland for information. She shared the guidance on visiting that has been sent to every care home in the county, which can be found below.

We are hoping to hold another Zoom forum around these visits in the coming months, and in the meantime please keep sharing your experiences of care home visits.

Tell us your experiences of:

  • Using video calls (FaceTime, Zoom etc.) or telephone calls – does the home support these? How many times a week and how long? Does a member of staff help your loved one with the call?
  • Socially distanced visits – does the home support ‘window’ visits.  How many times a week and how for long?
  • How does the home keep you informed about how your loved one is getting on (apart from necessary issues about their care or health), for example, manager updates, photographs, videos
  • Does the home have a programme of group and one-to-one activities? Has your loved one taken part?
  • Has the home asked you what, within the current restrictions, would make this time easier?
  • What, within the current restrictions, would make it better for you and your love one?
  • When restrictions are eventually eased (not totally lifted) what would help you and your loved one?

Get in touch

Care Home Guidance on visits November 2020

Letter to Care Homes November 2020

Pieces of my Jigsaw Project

Pieces of my Jigsaw is a memory book project from Crackin Toast involving people living with dementia in Northumberland. The project encourages people with dementia to continue telling their stories through conversations, illustrations and song. A short film of the project funded by The Arts Council is being shown venues across the county. It chronicles the project from the initial idea to the presentation of the personalised books and songs.

 

You can see the film, for free, at the following venues:

Wednesday 29 January: The Phoenix Theatre Blyth, 7.00pm

Tuesday 4 February: The Forum Cinema Hexham, 6.30pm

Tuesday 25 February: Cobalt Studios Newcastle, 6.30pm

 

An exhibition of the illustrations, books and pamphlets made during the project will be on display at:

The Forum Cinema Hexham, 2 – 15 January

The Phoenix Theatre Blyth, 30 January – 3 February

The Cloister Porch, Hexham Abbey, 5 February – 10 February

Woodhorn Colliery Museum, Ashington, 15 – 23 February

 

 

 

Magic Memories Dementia Cafe Blyth

Magic Memories Dementia Group Café at Blyth Central Methodist Church Hall, Beaconsfield Street, Blyth

For carers of, and people with memory problems or dementia. Come along for a chat, to pick up information and to enjoy some social time with others in a similar situation to your own where you can share ideas and experiences. There’s no need to book, please just drop in; refreshments will be available.

The café will run fortnightly on Mondays, dates shown below, from 1.00pm to 3.00pm in the Church Hall at Blyth Central Methodist Church.

(Magic Memories Dementia Cafe is independent to any of the church groups or activities)

For further information please contact Kath 07762 743579 or Joanne 07762 403292 or email: magicmemories2018@gmail.com

 

2020 dates – takes place on the following Mondays: 

13 and 27 January

17 and 24 February

9 and 23 March

6 and 23 April

11 May

1, 15 and 29 June

13 and 27 July

10 and 24 August

7 and 21 September

5 and 19 October

2, 16 and 30 November

7 and 14 December

Find more support at our Dementia webpage

Dementia Friends Cramlington

Dementia Friends are helping Cramlington become a dementia friendly town with their Dementia Friends monthly coffee mornings.

During this year’s Dementia Action Week the Cramlington dementia working group and Manor Walks Shopping Centre joined forces and created a Thought Wall. Having reviewed all the comments received the group came up with the idea of a meeting place for carers, support workers, dementia friends and people living with the condition.

Coffee mornings will take place on the first Thursday of every month at Nando’s in Cramlington. It’s a great opportunity to meet people, find support and advice on living with dementia and also to discuss ideas to support the town in becoming dementia friendly.

Dementia Friends are on hand to give information and help suggest other available support services  – these things can make a huge difference when you or someone you know has dementia. The coffee morning aims to provide a safe and supportive place for you to:

  • Discuss your own dementia diagnosis, or someone else’s, and think about what it means for the future.
  • Speak to  Dementia Friends and discuss how to help make Cramlington a dementia friendly town.
  • Meet and learn from other people in similar situations.
  • Keep active, make new friends and feel more confident.

You can join in at Nando’s, Cramlington from 10.00am to12.00pm on the first Thursday of the month and everyone is welcome.

Find out more about support with dementia at our Dementia Page

Dementia report

Are people with dementia getting the right support?

To find out whether people are getting the right dementia support as their condition deteriorates, Healthwatch England reviewed:

  • What over 700 people said about their care
  • Data from 97 councils about whether people’s needs are being assessed and reviewed
Fewer than half of all people with dementia, who use social care, are getting the regular care reviews they are entitled to. Councils must ensure that these reviews are happening in a timely fashion, to meet the requirements of the Care Act 2014 and to make all care plans responsive to people’s changing needs.

Key Findings

  • People don’t always have a clear understanding of the support available to them and how to access care.
  • On average, people wait over two months between requesting support for dementia from the council, to that support being put in place. However by the time that people ask, they are at crisis point.
  • Once people have a care plan, only 45% are reviewed annually.
  • People with dementia are more likely to receive unplanned reviews triggered by an emergency or sudden event than general social care users.
  • 65% of people with dementia who had a review were referred for a full reassessment. However, half of these reassessments led to no change in the level of care and support.
  • One third of people with dementia, using long-term care services did not receive any review, whether planned or unplanned.

 

Morpeth Memory Cafe

Morpeth memory Cafe is held at Morpeth Methodist Church and Centre for the Community. The cafe is for people with memory problems or dementia, and their family and friends. Come along for a chat, to pick up information and to enjoy some social time with others in a similar situation to your own. No need to book,  you can just drop in.

Refreshments will be available.

The café will run on the Thursdays shown below from 10.30am to 12.00pm in the coffee lounge at the Morpeth Methodist Centre, Howard Terrace, Morpeth. For further information please contact the church office on 01670 511078 or e-mail office@morpethmeth.org.

 

Memory Café Dates  June  – December 2019

June 6th and 20th

July 4th and 18th

August 1st and 15th

September 5th and 19th

October 3rd and 17th

November 7th and 21st

December 5th and 19th

 

Cartoon image of patient, carer and care professional

NICE Guide to Dementia – Support after Diagnosis

The National Institute for Health and Care Excellence (NICE) has produced a useful guide for people who have received a dementia diagnosis and their families. A diagnosis of dementia may create very mixed emotions. Coming to terms with it, making decisions and planning ahead are all part of living well with dementia. Getting information and support when you need it from people working in health and social care can make a real difference.

Read the NICE Dementia Support Guide

 

 

Events

Care homes – keeping in touch with loved ones (online forum)

As we enter a further period where visiting relatives in care homes is restricted, we want to hear how this is affecting you and your loved ones. What information have you had about keeping in touch and maintaining communications about care and wellbeing?

We are particularly keen to hear if you managed to be tested and have an ‘in person’ visit during December.

We would like to know your experience of:

  • Using video calls (FaceTime, Zoom etc) or telephone calls. Does the home support these?  How many times a week and how long?  Does a member of staff help your loved one with the call?
  • Socially distanced visits. Does the home support ‘window’ visits.  How many times a week and how long?
  • How does the home keep you informed about how your loved one is getting on (apart from necessary issues about their care or health). Eg manager updates, photographs, videos
  • Does the home have a programme of group and 1 to 1 activities? Has your loved one taken part?
  • Has the home asked you what, within the current restrictions, would make this time easier?
  • What, within the current restrictions, would make it better for you and your love one?
  • When restrictions are eventually eased (not totally lifted) what would help you and your loved one?

The forum will take place via Zoom. Read our guide on how to use Zoom.

If you would like to take part please contact Laura Haugh: laurah@healthwatchnorthumberland.co.uk, or call 03332 408468.

If you can’t make the forum and would like to tell us your story, or would rather speak to one of our team in confidence please get in touch.

 

Care Homes – keeping in touch with loved ones

People are telling us they are worried about care homes continuing to be closed to nearly all visits.

They understand it is safer for residents and staff and the extra efforts made to maintain the quality of life in the homes.   But after 6 months, people say they can see the effect on their loved ones, and their own, health and wellbeing.

It seems the situation may go on for some time yet.

Sharing good practice could help make this difficult time a bit better.   If your relative, loved one or friend lives in a care home we would like to know what is being done to keep you in touch day to day and on special occasions like birthdays.

We would like to know your experience of:

  • Using video calls (FaceTime, Zoom etc) or telephone calls. Does the home support these?  How many times a week and how long?  Does a member of staff help your loved one with the call?
  • Socially distanced visits. Does the home support ‘window’ visits.  How many times a week and how long?
  • How does the home keep you informed about how your loved one is getting on (apart from necessary issues about their care or health). Eg manager updates, photographs, videos
  • Does the home have a programme of group and 1 to 1 activities? Has your loved one taken part?
  • Has the home asked you what, within the current restrictions, would make this time easier?
  • What, within the current restrictions, would make it better for you and your love one?
  • When restrictions are eventually eased (not totally lifted) what would help you and your loved one?

The forums will take place via Zoom. Read our guide on how to use Zoom.

If you would like to take part please contact Laura Kane: laurak@healthwatchnorthumberland.co.uk, or call 03332 408468.

If you can’t make the forum and would like to tell us your story, or would rather speak to one of our team in confidence please get in touch.

 

Children and Young People’s Services

Are you a voluntary or community organisation working with young people? If so, we’d like you to join us for an open discussion on children and young peoples services, particularly around mental health services.

The forums will take place via Zoom. Read our guide on how to use Zoom.

If you would like to take part please contact Laura Kane: laurak@healthwatchnorthumberland.co.uk, or call 03332 408468.

Find out more about our other online forums

 

Cancer services: Join our online forum

If you, or someone close to you, have used cancer services in the last 12 months, we’d love to hear about your experiences at our online forum.

Lead Cancer Nurse, Amanda, from Northumbria Healthcare, and Jo from the Northern Cancer Alliance will be there to answer your questions.

You can join us as a cancer patient or carer or as someone who works with people using cancer services, or just if you have an interest in local services and support.

For those who aren’t able or would rather not attend, questions for Amanda, Jo, or Healthwatch Northumberland can be sent via text to: 07413 385275 anytime before 12 August.

The forums will take place via Zoom. Read our guide on how to use Zoom.

If you would like to take part please contact Laura Kane: laurak@healthwatchnorthumberland.co.uk, or call 03332 408468.

Find out more about our other online forums

 

Share your experiences – join our online forum

As we will be unable to get out and about across the county to meet with and listen to people for a while, we’re holding some public online forums, and we’d like you to join us. If you are unable to take part but would like to tell us about your experiences of these services, Caroline and Lesley will be available by phone, text and email each Wednesday between 3.00pm and 4.00pm to listen, answer any questions and help with providing information about services.

The forums will take place via Zoom. Read our guide on how to use Zoom.

Whilst some of our forums are on specific issues and services, this one is a chance to tell us about any health or social care service you’ve used in the last 12 months. That could be hospitals, GPs, care homes, NHS 111, mental health services, maternity services or dentists and pharmacies.

If you would like to take part please contact Laura Kane: laurak@healthwatchnorthumberland.co.uk, or call 03332 408468.

Find out more about our other online forums

 

online events

Mental Health services: Join our online forum

As we will be unable to get out and about across the county to meet with and listen to people for a while, we’re holding some public online forums, and we’d like you to join us. If you are unable to take part but would like to tell us about your experiences of these services, Caroline and Lesley will be available by phone, text and email each Wednesday between 3.00pm and 4.00pm to listen, answer any questions and help with providing information about services.

The forums will take place via Zoom. Read our guide on how to use Zoom.

The subject of this online forum is mental health services, so if you’d like to share your experiences of services in the last 12 months, or those of someone close to you, please join us.

If you would like to take part please contact Laura Kane: laurak@healthwatchnorthumberland.co.uk, or call 03332 408468.

Find out more about our other online forums

 

online events

Mental Health services: Join our online forum

As we will be unable to get out and about across the county to meet with and listen to people for a while, we’re holding some public online forums, and we’d like you to join us. If you are unable to take part but would like to tell us about your experiences of these services, Caroline and Lesley will be available by phone, text and email each Wednesday between 3.00pm and 4.00pm to listen, answer any questions and help with providing information about services.

The forums will take place via Zoom. Read our guide on how to use Zoom.

The subject of this online forum is mental health services, so if you’d like to share your experiences of services in the last 12 months, or those of someone close to you, please join us.

If you would like to take part please contact Lesley Tweddell, lesleyt@healthwatchnorthumberland.co.uk, or 07803 427 466.

 

Other online forums:

Wednesday 20 May 2.00pm – 3.00pm: Dementia Services.

Wednesday 27 May 2.00 – 3.00pm: Adult Social Services (to include support to live independently, care homes, learning disability services).

 

online events

Dementia services: Join our online forum

As we will be unable to get out and about across the county to meet with and listen to people for a while, we’re holding some public online forums, and we’d like you to join us. If you are unable to take part but would like to tell us about your experiences of these services, Caroline and Lesley will be available by phone, text and email each Wednesday between 3.00pm and 4.00pm to listen, answer any questions and help with providing information about services.

The forums will take place via Zoom. Read our guide on how to use Zoom.

The subject of this online forum is dementia services, so if you’d like to share your experiences of services in the last 12 months, or those of someone close to you, please join us.

If you would like to take part please contact Lesley Tweddell, lesleyt@healthwatchnorthumberland.co.uk, or 07803 427 466.

 

Coming soon:

Wednesday 27 May 2.00 – 3.00pm: Adult Social Services (to include support to live independently, care homes, learning disability services).

Wednesday 3 June 2.00 – 3.00pm: Mental Health Services.

Become a Dementia Friend

Come along to this free, interactive information session to learn how dementia affects a person and what you can do to make a difference. Become a Dementia Friend and join more than two million others taking action. From being more patient in a shop queue to campaigning for change, every action counts.

Anyone of any age can become a Dementia Friend.

Taking place at:

The Beaumont Hotel, Hexham NE46 3LT

5.15pm (for one hour)

All welcome. Please book in advance by emailing: edward.chivers@alzheimers.org.uk or call or text: 07784 224678.

Community Information Morning Hexham

The next Information Morning is on Thursday 14 November, from 10.30am to 12.30pm. Call in to this free event for a cuppa and slice of cake and discover more about what’s on offer locally. Advice and information about health and wellbeing, local services, social activities and more. There’s so much out there – come along and see what there is for you.