Dementia Guidance

http://www.londonscn.nhs.uk/wp-content/uploads/2015/09/dem-immediate-pds-guidance-03112015.pdf

The living well with dementia workstream has created guidance for professionals to support people with dementia and carers immediately following diagnosis. The guidance covers prognosis, mediations, assessing carers needs, signposting, post diagnosis support, information on services available, and signposts the reader to further information.

 

http://www.alzheimers.org.uk/info/20111/publications_about_dementia/790/the_dementia_guide

The dementia guide is for anyone who has recently been told they have dementia. It will help you understand more about dementia and the treatments, support and services that are available. It includes information about how you can live as well as possible with dementia and about making plans for the future. It also contains helpful information for anyone taking on a caring role.

The dementia guide has recently been updated, and now includes sections on living alone, technology, coming to terms with a diagnosis, communicating and changes to relationships

Detecting Dementia

feature image

Detecting dementia: how hit and miss is this questionnaire?

In the UK, 9.9 million people are aged over 65 and it has been estimated that around 6.6% have dementia; in the over 85s, this may be as high as 50%. Dementia has been identified as a national priority in health and social care and recent guidelines have emphasized early diagnosis to help with planning and management, though ‘screening’ for dementia remains the subject of debate.

A questionnaire to identify possible dementia

Currently, less than half those with dementia will be diagnosed as having it. There are lots of different ways of assessing people for possible dementia and no clear agreement about the best way to do it. One approach is to ask someone who knows the person about changes they’ve observed and a questionnaire that is commonly used for this purpose is the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE).

A team led by Dr Terry Quinn at the Cochrane Dementia and Cognitive Improvement Group has conducted a series of Cochrane reviews to find out what research can tell us about the accuracy of the IQCODE, used in different settings, for identifying possible dementia. A diagnosis of dementia can’t be made using the IQCODE alone, but this questionnaire can be used to flag up the need for further assessment or to help with a diagnosis along with other investigations.

Two thirds of adults with dementia live in the community. The Cochrane review of the IQCODE used in the community, to assess adults who had not been selected on the basis of cognitive testing or symptoms, draws on 11 datasets with data from 2644 people. The reviewers looked at the accuracy of the test against expert clinical diagnosis of dementia. The cut-off points for a ‘positive’ test result were those commonly used in clinical practice (3.3 to 3.6).

Here’s what they found:

The reviewers found that although the accuracy of the IQCODE is in a range that many would consider reasonable, in this population its use is likely to result in a large number of people being wrongly assessed as likely to have dementia and a large number of people who do have dementia being missed.

If 100 older people living in the community are assessed for dementia using the IQCODE…. 

100 lego figures


 Six people will be correctly diagnosed as having dementia 

6 lego figures on red


One person will have dementia but this will be missed by the test

one lego
 figure on green


79 people will not have dementia and will be correctly assessed by the test

79 lego figures on green


But 14 people who do not have dementia will be incorrectly diagnosed as having it

14 lego figures on red


So this is how the 100 have been sorted. It’s wrong for 15 of them.

all lego figures

How many would be wrongly assessed in our UK population?

Using the IQCODE alone to “screen” for dementia would result in 87,120 people with dementia not being picked up
and 1,314,660 dementia free people being given a possible diagnosis of dementia. That’s a lot.
 

What else did they find out?

The shorter, 16 item version of the IQCODE, already common in clinical practice, was found to be no more or less accurate than the 26 item version and is quicker to complete. There was little difference in accuracy between the different cut-off points used. The reviewers note that the included studies have limitations and potential biases but also that their results are consistent and the findings of the review reasonably robust.

The review looked at the IQCODE only so cannot assess how it compares to other tests or how well it works used with other tests. The team have also looked at the evidence for the accuracy of the IQCODE in general practice and in hospital settings in separate reviews.

How good was the evidence?

In many of the studies there was substantial potential for bias and the quality of reporting could have been better. On the whole, there was enough detail and the clinical dementia assessment was robust, but methodology and reporting of patient sampling and use of IQCODE could be improved.

Where does that leave us?

Using the IQCODE alone in a general community population would result in a lot of false results.

The reviewers conclude:

“As a single assessment tool IQCODE properties may not be suited to population level screening… Given the public perception of dementia, it is arguable that the distress caused by assigning a dementia label to a person without the disease is greater than the potential harm of initially missing dementia on screening. These are important concepts that need to be considered if large scale cognitive screening is to be introduced.”

Many thanks to Dr Terry Quinn, University of Glasgow, for helping us explain the results using Lego!

Creative Commons License
Detecting dementia: how hit and miss is this questionnaire? by Sarah Chapman is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.
Based on a work at http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010079.pub2/abstract.

To see the full article and references, please visit: http://www.evidentlycochrane.net/assessed-for-dementia/ 

 

Dementia

Dementia and other memory problems

Mild or short-term memory loss can have a perfectly simple explanation. However, more severe memory problems could be a symptom of a serious illness, such as a brain tumour, Alzheimer’s or Parkinson’s disease. In this guide we explain the possible causes and signs of memory loss, and the best way to support someone with dementia.

If you're wondering what kind of help would be best for your relative or friend, our Care advice tool can give you some guidance about housing options, day-to-day living arrangements and how to pay for care. 

Use our Care services directory to find care homes, agencies for care at home or local authority services for your relative anywhere in the UK.

Free Elderly Care Money Helpline

Speak to one of our financial experts

Let us help you

In this guide

Source: http://www.which.co.uk/elderly-care/your-relatives-needs/dementia-and-other-memory-problems

The Alzheimer Show June 2016

Whether you are a carer, a healthcare professional, a person with dementia or simply want to find out more, The Alzheimer’s Show website aims to inform, explain and educate. It offers practical tips as well as advice on seeking the best treatment for friends or loved ones affected. It is also a useful resource for those who simply want to understand or learn more about Alzheimer’s and dementia.I went last year and I will be going again this year. It was really useful.

when & where

Opening Times

 Friday 10th June 2016 • 9.30am to 5.00pm
Saturday 11th June 2016 • 9.30am to 4.30pm

 The Venue

 Olympia Central, Hammersmith Road,
Kensington, London W14 8UX

Click here to view map

Prices

Adult £12.00 £18.00
Adult - 2 day ticket £18.00 £24.00
Concession* £9.00 £15.00
Group Bookings (10 or more) £8.00 N/A

 
TICKETS ARE FOR ONE DAY ONLY BUT CAN BE USED TO VISIT ON EITHER DAY
2 DAY TICKETS ARE AVAILABLE AT AN OFFER PRICE OF £18 ONLINE

Please note that a £1 booking fee is applicable on all online bookings
Children under 14 enter free when accompanied by an adult
*(Unemployed, in receipt of Disability Living Allowance, registered disabled, students)

TICKETS AVAILABLE FROM 1ST FEBRUARY 2016

Dementia resources and help

Age UK

Age UK is the largest charity dedicated to helping everyone make the most of later life.

  • 0800 169 2081 Advice Line
  • Tavis House, 1-6 Tavistock Square, London WC1H 9NA
 
 

Alzheimer’s Research UK

The UK’s leading research charity in dementia pioneering work focusing on prevention, treatment and cure.

  • 0300 111 5555
  • 3 Riverside, Granta Park, Cambridge CB21 6AD
  • enquiries@alzheimersresearch.org
 
 

Alzheimer’s Society

The UK’s leading support and research charity providing information and support for people with dementia, their families and carers.

  • 020 7423 3500
  • Devon House, 58 St Katharine's Dock, London E1W 1LB
 
 
 

Care England

Care England is the leading representative body for independent care services in England. Working on behalf of small, medium and large providers, Care England speaks with a single unified voice for both members and the whole care sector.

  • 020 7492 4840
  • 2nd Floor 40 Artillery Lane London E1 7LS
  • info@careengland.org.uk
 
 

Carers Trust

Carers Trust is a major charity for, with and about carers. They work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.

  • 0844 800 4361
  • 32-36 Loman Street, London SE1 0EH
  • info@carers.org
 
 

Carers UK

As the UK’s only national membership charity for carers, Carers UK is both a support network and a movement for change. For the past 50 years they have been driven by carers raising their voices together to call for change and seek recognition and support.

  • 020 7378 4999
  • 20 Great Dover Street, London SE1 4LX
  • info@carersuk.org
 
 
 

Care Quality Commission

CQC ensure health and social care services provide people with safe and high-quality care. They monitor, inspect and regulate services to ensure they meet standards of quality.

  • 03000 616161
  • Finsbury Tower, 103-105 Bunhill Row, London EC1Y 8TG
  • enquiries@cqc.org.uk
 
 

Dementia Action Alliance

The Dementia Action Alliance is a movement with one simple aim: to bring about a society-wide response to dementia. It encourages and supports communities and organisations across England to take practical actions to enable people to live well with dementia and reduce the risk of costly crisis intervention.

 
 

Dementia Friends

Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, acts and talks about the condition

  • 0300 222 5855
 
 
 

Join Dementia Research

National Institute for Health Research (NIHR) in partnership with Alzheimer ScotlandAlzheimer’s Research UK and Alzheimer’s Society have developed ‘Join dementia research’, a new service which allows people to register their interest in participating in dementia research and be matched to suitable studies.

  • Helpline: Alzheimer's Research UK 0300 1115111
  • Helpline: Alzheimer's Scotland 0808 8083000
  • Helpline: Alzheimer's Society 0300 2221122
 
 

The Law Society

The Law Society exists to support, promote and represent all solicitors so they can help their clients. The Law Society does not provide legal advice for members of the public. For individual advice, use Find a Solicitor website to locate a law firm or solicitor in your area.

  • 020 7320 5650
  • The Law Society's Hall 113 Chancery Lane, London WC2A 1PL
 
 

Memory & Alzheimer’s Cafés UK Directory

This independent directory has been developed to enable anyone to locate a Memory or Alzheimer’s Cafe in England, Wales, Scotland or Northern Ireland by region or county.

 
 
 

NHS Choices

The NHS Choices website has a whole range of information and advice about many conditions. The link below is to the ‘About Dementia’ page, offering advice and support.

 
 

Social Care Institute for Excellence

The Social Care Institute for Excellence (SCIE) is a leading improvement support agency and independent charity, working with the care and support sector in the UK. It provides films, signposting and information to help those affected by dementia.

  • First floor, Kinnaird House, 1 Pall Mall East London SW1Y 5BP
 
 

Young Dementia UK

Dementia is considered ‘young onset’ when it affects people under 65 years of age.  It is also referred to as ‘early onset’ or ‘working age’ dementia. Young Dementia UK is a charity to help people whose lives are affected by young onset dementia.

  • 01993 776295
  • PO Box 315 Witney Oxfordshire OX28 1ZN
  • mail@youngdementiauk.org
 

Dementia Care Matters

Today, I had the honour (and it really was an honour) to meet Dr David Sheard, the Founder and Chief executive of Dementia Care Matters and I wanted to share what an inspiration he is. (and it takes a lot to impress me).

He understands dementia-He REALLY comprehends dementia but not only does he grasp it-he is able to make a whole room full of clinicians identify with it. I have included a couple of videos of David talking about dementia as well as the URL for his website. There is a free membership scheme which means you will benefit from 3 newsletters, early notification of new events and training events, amongst other resources that can also be upgraded.

http://www.dementiacarematters.com

https://youtu.be/YOUDrDGDZrE

https://youtu.be/ZWarNkEOIG8

 

 

 

More Useful Resources

  • AT Dementia:

A web-based information resource on assistive technologies (including telecare) for people with dementia. In addition to general information the website contains a database of products that may be appropriate for people with dementia.

 

Trent Dementia Services Development Centre

9 Newarke Street

Leicester

LE1 5SN

Tel: 0116 257 5017

Email: info@trentdsdc.org.uk

Website: http://www.atdementia.org.uk

 

  • ALZHEIMERS ORGANISATION (Mentioned in the CARERS section)

Provides information on dementia, including factsheets and helplines.

Phone: 0300 222 1122 (Mon-Fri, 9am-5pm. Weekends, 10am-4pm)

Website: http://www.alzheimers.org.uk/

Becoming a Dementia Friend gives people an understanding of dementia. This can make a huge difference to people with dementia and those around them. Please visit http://www.alzheimers.dementiafriends.org.uk for more information on how to become a friend.

  • DEMENTIA UK (Mentioned in the CARERS section)

Website: http://www.dementiauk.org.uk/

Tel: 0845 257 9406

E-mail: direct@dementia.org

 Additional Resources:

Dementia Adventure  -Specially designed small group short breaks and holidays for people with dementia and their carers to enjoy together. This is designed as an alternative to traditional respite which can be stressful for some people with dementia. 

Dementia Advocacy and Support Network International - a worldwide organization by and for those diagnosed with dementia, working together to improve quality of life.

Dementia Gateway - resources, including films, activities and e learning from early signs and diagnosis, through living with dementia to end of life care. From the SCIE (Social Care Institute for Excellence). 

Dementia UK - aims to improve the quality of life of dementia patients. Also promotes and develops Admiral Nursing - a specialist nursing intervention focused on meeting the needs of carers and families of people with dementia. 

Dementia Web - Provides the Dementia Information Prescription, which includes a list of local key services, organisations and contact telephone numbers in many, but not yet all, parts of England. Also provides a Hints and Tips booklet and After Diagnosis – a Handy Guide. 24 hour helpline on 0845 1204048

Arts4Dementia - Information about arts programmes in London for people in the early stages of dementia and their carers. These programmes can stimulate brain activity and bring relief from anxiety and confusion, for them, their families and carers

 

 

 

Useful tools for dementia

Memoryappsfordementia - recommends iPad apps for people with dementia. It takes advanatage of the fact that iPads are easier to use and more tactile and responsive than traditional computers. Apps recommended are for Art, Music, Reminiscence, Story telling and Video

Innovations in Dementia - Innovations in Dementia develops and tests projects designed to enhance the lives of people with dementia. It provides a useful guide to Getting equipped to tackle forgetfulness. This includes equipment to help find things, remember to do things, keep safe, take medication, avoid getting lost and raise the alarm in emergency