An A-Z of dementia

said

Registered User
Jul 4, 2006
643
London
We are going to be launching our new website at the beginning of November.

As part of that process we have taken a look at the people who currently use it and it is clear that many are new to dementia and new to the Alzheimer's Society.

The new site should be a lot clearer to navigate with a clearer menu structure and a search engine that works :rolleyes: but we also want to offer people an A-Z of key terms people might come across when first researching dementia following a diagnosis.

This could then link to other information we have on the site.

So for example under A we could have

  • Alzheimer's

but also

  • Alcohol
  • Aluminium

etc

The plan is to get all your suggestions reviewed by Clive Evers our Director of Knowledge Management who will make the final decision as to which key terms we go with.

So if you have some time, have a think about it and help the web team build a better website.

All the best

Said
(Website Manager)
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Clever, Said - a variant of Margarita's Name Game.. :)

Seriously though, a good idea.

Are the following along the right lines?

Alzheimer's
Alcohol
Aluminium
Aricept
Behavioural challenges

Care homes
Continuing Care
Cooking

Day Centres
Dementia
Diagnosis
Diversions
Drink
Driving

Early Onset
Entertaining
Exelon
Eyesight

Falling
Food

Hearing
Holidays

Leaning

Medications
Memories
Memory Test
MMSE

Pick's

Respite
Reminyl

Sundowning
Symptoms

Understanding

Vascular

Young Onset
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
Dear Said.

Well done Said,

This sounds absolutely brilliant, while I appreciate that you are just starting and that there is a long way to go, I am sure that there are enough people here to give you the inspiration that you need.

We seem to have a brilliant cross section which would be very hard to get anywhere else.

Good Luck

Ken
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Said, when you mention a search engine that works, will it be able to cope with short words? Searching for PEG or EPA for example is an exercise in futitlity currently.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
what would also be helpful and that why I use goggle search engine , is when I put the wrong spelling in it say '' Do you mean '' and go on to give me the right spelling leading me to the right link . have seen it done on only on a few medical web site search engine

where other main search engine don't do that .

link to all about spiral awareness

add that to the S please :D
 
Last edited:

CraigC

Registered User
Mar 21, 2003
6,632
London
thanks for asking!


Aggression
Care Choices
Council Tax Exemption
CJD
Depression
EPA
Hallucinations
Huntington's disease
Hospitalisation
Multiple sclerosis
NHS (Funded Care)
LPA
Lewy (Boddies)
Paying (for Care)
Parkinson's disease
Picks
Respite
Korsakoff's
Vision
Wandering
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Said,

Might be interesting to run a textual analysis of the last 1-2 years' posts on TP and see what the top 100 words are. This isn't as good as the direct input from TP Members regarding what they would like to see included on an A-Z, but it would be interesting.

Also, can you analyse what search terms are most frequently requested on TP, within the main Society site and also via referring search engines? That might be another source of ideas.

The makeover of TP looks brilliant, but please can you consider moving away from using fixed-size fonts in the CSS (not very WAI-friendly)?

Many thanks,

Sandy
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Brilliant idea!

Carers' assessments
Ebixa
'Going home' / 'sundowning'
Primary Progresive Aphasia
Social Services assessments
Spatial awareness (I think that's what Maggie means)
UTIs
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
said said:
..... an A-Z of key terms people might come across when first researching dementia following a diagnosis.
Hi Said - brilliant!!!! Two thoughts:

1) 'J' for 'Jargon'!!!!! Glossary of abbreviations (you may have seen Cliff has already identified that need and started work on that in the Tea Room!;) ). I didn't have a clue what a CPN or EPA was when I first joined TP - or even if there was any difference between them! :eek:

2) I would like to think 'W' for 'Worried?' was included ...... I am sure many, many people - like I did - first come to TP when there are simply concerns - and a 'suspicion' of any form of dementia - and don't even know how to go about getting a diagnosis or how best to secure help and presenting information when approaching GPs or other sources of support .....

Karen
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Ok you did ask

How about a 3D [ three dimensions ] program of the brain showing what happen to the brain when someone has AZ showing the changes explaining those complicated names that the disease destroy coursing the symptoms .

Just that when I was new to AZ I could not understand how a disease call AZ could give my mother so many negative symptoms , I did have to read a lot about it , but I am a very visual person , did find a kind of program like that , but only on the web site of exbiza , but then that was just showing how the medication helps , not what happen in the brain to course the disease . 3D would bring it more up to date . Just my thought on it

Spatial awareness (I think that's what Maggie means)
thanks hazel that the right spelling
 
Last edited:

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
Benefits

Just read a post with some very good advice regarding someone who is worried about respite care charges made by a LA. I think it would be wonderful if the newly revampled TP site could have a place where we can go to check on these things without posting.

Also good advice about what are the usual 'steps' which are the 'norm' when someone is diagnosed. ie., what benefits to claim, what are the usual procedures regarding getting a social worker, care assessment, and other necessary things. As my husband was diagnosed when well into the stages of AZ, I was completely at a loss as to what to do. It took me months of reading through TP postings to get a glimmer of what was 'normal' beurocratic procedures necessary to get the help I needed. xx TinaT
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Right as you all know does not take a lot to confuse me :confused:

We are going to be launching our new website at the beginning of November.

As part of that process we have taken a look at the people who currently use it and it is clear that many are new to dementia and new to the Alzheimer's Society.
Are we taking about launching a new website on the main home page ?

Or are you launching a new TP website Said ?

As I thought it was the main home page of Alzheimers Society :eek: site web page that was getting a new look
 
Last edited:

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Margarita

as I understand it, the process is:

- TP changes to new colours, the first part of the AS website to do so. [this has happened, as we know]

- October TP changes format to be simplified

- November 5th the main AS web pages convert to new colours.

Said will no doubt confirm - or correct my understanding...

I'm not sure when the A-Z appears...:confused:
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Like this?

Aggression verbal
Aggression physical
Attendance allowance
Admiral nurses

community Matrons
Community assessments
Carers
Crossroads

Direct Payments
Dental Health
Duty Social worker

Fair charging

Hospice at Home

Incontinence
ITA

Mental Health act

Podiatry
Palliative Care
Penderels Trust

Social worker

Norman
 
Last edited:

Petrus

Registered User
Aug 7, 2007
61
Northumberland
Thoughts

Said,
1. Some words: Aggressive AD, Rapid On-set AD, Prognosis, ID tags, NICE, NICE guidelines, National Audit Office Report, CSCI Reports
2. Would be worth your compiling word suggestions you have so we can look for holes in the list
3. The US Alzheimer's Association has the brain tour mentioned above ( you could hotlink, I guess); there is an even better one on the US Public Broadcasting Service site (PBS.org) as part of their brilliant site on Alzheimer's ("The Forgetting"). There is also excellent info. on the Mayo Clinic site in their Alzheimer's Center.
 

said

Registered User
Jul 4, 2006
643
London
Petrus said:
Would be worth your compiling word suggestions you have so we can look for holes in the list
Thank you everyone. Lets keep them coming.

Petrus I will compile words/search terms that have been suggested on this thread later today.
 

Cliff

Registered User
Jun 29, 2007
777
North Wales
Have listed a number of abbreviations which you may find useful

AKA - also known as
CAT - computer aided tomography – xray examination of the body displayed as sections
C. Diff or maybe CD - clostridium dificile
CD - Chronic diarrohea - yellowish brownish, and very loose take precautions if in contact
CPN - community psychiatric nurse
CSCI - commission for social care inspection
CVA - cardio vascular accident
DN – District Nurse
DV - Deo volente/ Dieu Voeux/God willing
DVLA - driver and vehicle licencing authority ( at request of an Australian lady)
EMI - elderly mentally infirm
ECG - electro cardio gram
EEG - electro encephlogram=Electrodes attached to the brain to monitor brain activity
EMU - elderley mobility unit - a ward that the elderley are taken if a break is suspected
EPA - enduring power of attorney
FIL/MIL - Father/Mother in law
LA - local authority/the council
LFT - Liver Function Test
MRI scan - scanning with magnetic resonance imaging
MRI - Manchester Royal Infirmary
MRSA -- methicillin resistant Staphylococcus aureus
MSU - Midstream Sample of Urine
MI - multple infarction
PA - power of attorney
PCT -Primary Care Trust/ local health authorities now
PEG - percutaneous endoscopic gastrostomy = a feeding tube is inserted directly into the abdomen
PICU - psychiatric intensive care unit
- in the USA and Oz, pediatric intensive care unit
POV - point of view
SW - Social Worker
TFT - Thyroid Function Test
TIA - Transcient ischaemic attack. (Brief episode of shortage of blood to the brain).
TTTP - They take the P***.I wonder how many forum members have thought this of GP's
UTI - urinary tract infection.
U&E's - Ureas&Electrolytes=testing for potassium levels
U&E's - Ureas & Electrolytes=testing for potassium levels
LFT - Liver Function Test
TFT -Thyroid Function Test
MSU - Midstream Sample of Urine
TIA - Transcient ischaemic attack. (Brief episode of shortage of blood to the brain)

Everything here is given in good faith with NO medical knowledge on my part.

Best wishes
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Public Broadcasting Service site (PBS.org) as part of their brilliant site on Alzheimer's ("The Forgetting").
Thank- you Petrus for telling us about that , its really good just what I was looking for
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
May I suggest cross referencing too? Such as DRIVING under "D" and also LICENCE - DRIVERS under "L"??

There are times I look for things apparently in vain, only to find it WAS there but not under the term/s I used to find it. (Not on TP - when I'm searching other things - such as the Phone book!!)

Think this is a GREAT idea! Well done!