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Dementia Carer


Please see latest news articles below from South Yorkshire and Nottinghamshire as well as those from farther afield. 

We hope you enjoy reading our news and any feedback is always welcome.

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23rd April 2014 - Official Website launch

The www.dementiacarer.net website was officially launched at The Point in Doncaster on May 20th as part of Dementia Awareness Week. 


After over a year of development and the involvement and participation of more than 100 carers of people with dementia the dementiacarer.net was launched on 20th May at The Point Doncaster. 

 

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20th May 2014 - Dementia Champion Trevor Jarvis reviews www.dementiacarer.net

See Trevor reviewing the website here


22nd May 2014 - Yorkshire Post: Lifeline for carers

Read the Yorkshire Post article on www.dementiacarer.net here


30th May 2014 - Support for Carers of people with dementia

Support for Carers of People with Dementia

6th June 2014, Hilton Hotel, York


 

 

PROGRAMME

Improving access to information for carers: Getting the right information at the right time in the right way

Time

Topic

Speakers

09:00

Registration & refreshments

09:30

Welcome and introductions

Ruth Hannan (Chair person), Carers Trust

09:40 

 

Background context and key issues

Aims for the day

Val Rhodes, InRhodes Ltd / Improvement Academy

10:00

Carers’ Call to Action

Carer Perspective

Louise Langham, Dementia Action Alliance

Ray Carver, Carer

10:20

Introduction to A Road Less Rocky

Ruth Chamberlain, North Yorkshire County Council / Firefly Research and Evaluation

10:35

Group work 1: what are the needs of dementia carers along a pathway

Refreshments available

Val Rhodes

 

11:30

Group feedback: pathways and needs

12:15

Lunch, exhibition

13:15

Group work 2: how should information be given to carers and by whom

Val Rhodes

13:45

Group feedback: challenges

14:15

 

Consultation with dementia support groups regarding information for carers

Development of a dementia carers website

Dementia carers: South Asian communities

Ian McCreath, Helen Turner Alzheimer’s Society (15-20min)

Tom Chrisp, ARC Research (20-25min)

Akhlak Rauf, Meri Yaadain (20min)

15:15

Group work 3: what might improvements look like for carers; measuring improvements

Refreshments available

Val Rhodes

15:45

Group feedback

16.00

Next steps

Val Rhodes

16:20

Closing comments

Ruth Hannan

16:30

Depart

 

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11th June 2014 - Carers Call to action Webinar

Call to Action webinar on Thursday 12th June at 3pm - Please register in advance here


Hear Frank Arrojo and Louise Langham talk about their experiences of caring for their parents with dementia and what The Carers' Call to Action is doing to campaign to support the needs and rights of husbands, wives, partners, children, friends living with dementia.

29th September 2014 - 2000 pledges made as part of the You can make a difference campaign

2000 pledges have been made by staff and students in Health and Social Care on making a difference to those caring for someone with dementia. Find out more about the campaign here


01st October 2014 - Personal is political: women's experiences of dementia

Women and dementia: exploring a feminist perspective

Thursday 6 November 2014
10.00 am – 4.00 pm (times to be confirmed)
ARRC Auditorium, University of York, Heslington, York, YO10 5DD

 

 


Key influencers and decision makers from around the country will get together to:

  • Share the thoughts and experiences of women living with dementia, women who are caring for family members with dementia, and the female workforce.
  • Debate the underlying issues about dementia from a women's perspective.
  • Decide what more needs to be done to change attitudes, policy and practice

If you could like to attend, please register online at bit.ly/wexpd.

04th November 2014 - Carers strategy actions for 2014 to 2016

Explains the progress on supporting carers since 2010 and explains the main actions for the next 2 years. 


See the full strategy here

19th November 2014 - DAA The Carers' Call to Action Webinar January 22nd 2015 Please Register!

Please follow link to register for the DAA webinar: https://survs.com/survey/3gabnqw7rn - how we can support local meaningful engagement with family carers living with dementia Please also see www.dementiaaction.org.uk/carers to download the DAA booklet by carers for carers and our 20 point checklist.


11th December 2014 - Coping at Christmas

Coping at Christmas provides free festive lunches and overnight stays to those older people who would otherwise be alone. Find out more here


06th January 2015 - Dementia: engaging with dementia carers

Free National Skills Academy webinar with Tom Chrisp from www.dementiacarer.net on how professionals and family carers engage to ensure that needs are met. To register click here


21st January 2015 - National Skills Academy for Health: dementiacarer webinar

Listen to Tom talking about the how professionals can work with family carers and introducing the Teabags in the Fridge resource. 


30th January 2015 - LSN To Host New Involvement Network for Carers of People with Dementia

A new Involvement Network for Family Carers of People with Dementia, backed by Prof. Alistair Burns and Norman Lamb MP, is being set up by the Life Story Network CIC with funding from the Department of Health and the support of Carers Trust and Mersey Care NHS Trust. This follows on from the successful campaign- Carers Call to Action – which has raised the profile and unique needs of carers of people living with dementia.

Further information can be found here and individuals can sign up by downloading and completing this simple one page form and returning either via the post or by e-mailing it to julie@lifestorynetwork.org.uk

If you have any questions, or require further information, please contact Julie McManus by telephone on 0151 237 2669 or via e-mail at julie@lifestorynetwork.org.uk

04th March 2015 - Dementia, nature and outdoor activity--We want to hear from you

The Mental Health Foundation is carrying out a research project, commissioned by Dementia Adventure and Natural England, to explore the role of outdoor activity in nature for enabling people to live well with a dementia.

 


We are interested in the views and experiences of carers or supporters of people who are living with dementia. We would like to know why people living with a dementia do or don’t participate in outdoor activities and nature, as well as how to make nature spaces more dementia friendly.

 

If you are a carer or supporter of a person who is living with a dementia and would like to participate in this research, please follow the link below to find more information and to complete our online survey about Dementia and Engagement with Nature.

 

You can link to the research here

 

13th March 2015 - Academy of Fab NHS Stuff

The website has been included in the Academy of Fab NHS stuff. Please do have a look here and let us know what you think!


24th April 2015 - Support for carers

As of April 2015, there will be national changes to the support available for carers including the right to request a carers assessment. Changes to follow later include caps on care costs. Please see the link below for more detailed information.


Click here for more detailed information

22nd May 2015 - Summer newsletter

So the sun in finally out and we can start to think about switching the heating off!


Spring into Summer has been a busy time for us. We have now added all the buttons that were suggested from the research with carers of people with dementia. You can now find content on the website under the following buttons:

  • Looking after yourself
  • Daily life
  • Friends and Family
  • Working with others
  • Relationships
  • Understanding dementia
  • Preparing for the future

We have also added a tab for Local Services so that you can see all the services offered locally. 

 

Dementia Carer Book club

Another new development is the book club which you can access by clicking on flashing book at the top of the Looking after Yourself page. This houses reviews of books on dementia by carers and those working with them. If you have recently read a book on dementia and would like to contribute a review please do, or if you don't have a book let me know and I will send you one to review. 

 

New areas

We are currently adding local services in Bradford and York as well keeping up to date the local services in Nottinghamshire and South Yorkshire. If you know of any changes to services or new projects we need to include please do let me know. 

23rd July 2015 - Dementia Matters

We will be running a workshop at this conference in October.


DEMENTIA MATTERS

An ecumenical event exploring how individuals and churches can better understand, value and nurture those living with dementia


SATURDAY 17 OCTOBER

9.30am-4.00pm

Queen Elizabeth Hospital Birmingham


Keynote speakers:

LARRY GARDINER | Living with Dementia

MARGARET HARRIES | What Might a Dementia Friendly Community Look Like?

ROY MCCLOUGHRY | A Theology of Personhood

The day also includes a range of workshops


BOOK ONLINE NOW here

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24th November 2015 - Christmas newsletter!

So, it has been 18months since we launched www.dementiacarer.net! 

In that time nearly 12,000 people have visited the site, many for more than one time. Each person stays an average of 3 minutes unless they are from one of the areas where local services are included. For those areas the average stay is much longer at around 4.5 minutes. 

In other news we now have Local Services from Bradford and York included. We have taken this opportunity to revamp the Local Services section. We have added buttons for Dementia support and groups, and Carers' support and groups, and made a Quick Links section so you can get to the service detail more quickly. Let us know what you think. 

 

Other new content includes more videos from Bradford including some on looking after someone with diabetes who is living with dementia. We have shared these with the All Party Parliamentary Group on dementia and co-morbidities. 

 

We are currently reviewing the Local Services for South Yorkshire so please let us know if any changes are needed. 

 Season's Greetings from

Sharon, Tom, Jade and Ben. 

 

 

 

23rd March 2016 - Dementia emergency

Dignity in Dementia working with Cumbria Police have developed a new free app called ‘Dementia Emergency’. The app provides simple guidance on how to respond to a range of dementia emergency scenarios and is useful for emergency service personnel, family carers and others. 

 

 


The development of this app has been funded by Skills for Care’s Workforce Development Innovation fund.  The app, which is called ‘Dementia Emergency’ is free to download from the Apple and Android app stores.

 

Please click the link below to go to the listing on the apple app store for more information about the app:

 

https://itunes.apple.com/gb/app/dementia-emergency/id1072396675?mt=8

12th May 2016 - Alzheimer's Society Cupcake day

Wooden spoons at the ready! 16 June is Alzheimer’s Society’s Cupcake Day, proudly supported by our friends at woman & home.


This is your chance to host a party at work, home – or wherever you like. The only ingredients you need are cupcakes, friends and fun ways to raise money to help defeat dementia.

What your cupcake can do

Your Cupcake Day will be more than just a deliciously indulgent day. By whisking up 20 tasty cupcakes and suggesting everyone donates just £2 each, you could raise £40.

This could pay for a person living with dementia to attend one of our Dementia Cafés for two months, where they can share stories and advice with people who understand what they are going through.

 

To receive you free Cupcake kit please follow this link https://cupcakeday.alzheimers.org.uk/request-a-pack

21st June 2016 - Summer newsletter

So the sun is finally out and we can start to look forward to spending time outside at last! 

 


Here at www.dementiacarer.net we have spent the winter working on the site and specifically adding in two new buttons. 

The first of these is: Caring from a distance in the My Relationship section of the site. This came about in repsonse to the large number of carers, particularly sons and daughters who are in this situation. In this section we have videos from carers in this situation as well as links to resources to help. 

The second new button we have added is: Dementia Friendly Communities in the Friends and Family area of the site. This has links to all the Dementia Friendly organisations in the local areas. We are inputting these links currently. 

We are also changing the way we update the local services. From now on organisations will receive an email from the site asking them to check details. This will hopefully make the process much quicker. Let us know what you think!

In other developments we are continuing to develop the Professional login area. Please do let us have any feedback on this. 

Happy summer to you all.

 

Sharon,Tom and Jade

30th June 2016 - Have you say: Carer's strategy

The government are consulting on a new Carer's Strategy. Have your say here:

https://consultations.dh.gov.uk/carers/how-can-we-improve-support-for-carers/consultation/subpage.2016-03-08.6836342440/view

 


22nd July 2016 - Royal College of psychiatrists carer's survey.

Calling all carers! Share your views on dementia care in hospital - 
http://bit.ly/22xmeZ5

The anonymous questionnaire is part of a National Clinical Audit, which aims to improve the quality of care that hospitals provide to people who have confusion or memory problems.


10th January 2017 - Get involved in evaluating support for carers of people with dementia  National Survey of Carers

 

A key part of our mission in tide – together in dementia everyday is tocampaign for better support for carers of people with dementia and influencegovernment, legislation, research and policy. 

 


 

We are currently working on an exciting research project in collaboration with University of York's Social Policy Research Unit (SPRU) and Dementia UK; facilitating and conducting the first large scale independent national study looking at support for carers of people with dementia, which is being funded by the National Institute for Health Research. Carers who join tide will receive invitations to take part in this research and other nationally important projects.

 

The aim of this survey is to find out whether there are any differences in how carers feel in areas with different types of support services. The results from this survey will help service planners to make more informed decisions about what support and services to provide to carers of people with dementia.  It will also help people affected by dementia and the professionals who work with them to make the case for the most effective services in their area. 

 

The national survey (developed with carers and taking no longer than 30 minutes) will ask carers:  

•          What services they use

•          How they feel about their quality of life 

•          How they feel about their health  

•          How confident they feel in their ability to handle various aspects of caring 

•          How much time they spend on caring tasks

 

We would really appreciate it if you could disseminate this information to carers of people with dementia you are in contact with and encourage them to join tide by signing up using the following link:  http://www.tide.uk.net/#sign-up

Carers who join tide will receive invitations to take part in this research and other nationally important projects.

If you would like further information on this survey or any other research projects we are engaged in please contact Louise Langham at tide – together in dementia everydaypart of the Life Story Network) on 07960 503783or email Louise@tide.uk.net  

22nd March 2017 - DO YOU OR ANYONE YOU KNOW WORK AND CARE FOR A PERSON WITH DEMENTIA?

We need people like you to take part in an exciting new study which is exploring the work life balance among working carers.

 


 

If you meet the criteria below, and are interested in participating in this project, please contact Rachel Clarke (rc362@sussex.ac.uk or 07902 651500) who will provide you with more information:

 

ü  I work (voluntarily or paid) and provide care for at least 10 hours a week

ü  I have had a minimum of one years’ experience as a carer

ü  I do not provide care for a person with frontotemporal dementia