1. PERSONAL HYGIENE IN PWS
September
Susanne Blichfeldt MD. Denmark

2. TO HELP From Søren Kirkegaard. DK ( 1813) In short:
To help another person you need to understand more than he does, but first of all you need to understand what he understands. Otherwise you cannot help.
Do you really want to help ? Or is your wish to be admired for your knowledge ?
All help starts with humiliation !
To help is not to rule but to serve
Patience is needed
And, You have to accept that perhaps you are wrong

3. GOOD HYGIENE IS IMPORTANT
To avoid infections
To prevent and avoid diseases.
This is known for more than 200 years
To look nicely
To smell nicely
Important for yourself, your health,
For your personal contacts

4. PWS and HYGIENE IMPORTANT : To look nice and avoid diseases
DIFFICULT in PWS: when you:
do not understand the problem ( understanding)
do not sense or feel when to act (sensation)
do not know how /what to do ( plan and act)
do not know how / when to stop when started
create own rules and ideas, difficult to change

5. PWS: Understand the importance
Many do not understand, but perhaps know, are taught, the consequence of poor hygiene
To really understand the question it demands the ability of abstract thinking:
About infections and diseases
To imagine the reactions of others
So: having PWS you need practical guidance

6. Sensation difficulties in PWS
When is my body warm and cold ?
Which type of clothes to choose ?
Where is my body… and where are you?
Where do I place myself in front of you ?
How tall, how broad, am I ?
The length of arms and legs etc.

7. What is difficult to do
Abstract thinking and to plan what you are told to do, can be impossible. (PWS)
Ex .” Oh you have some dirt on your elbow, please go to the bathroom and wash it, and:
Take care that you do not wet your clothes. Come back in two minutes, we are leaving in 5 minutes”
This message has 6 oral messages
…. and no pictures, so for some: impossible

8. Understand instructions
What is only told is often difficult to understand
Pictures and drawings can help
Timers can help to structure and limit time
We have to be there until it is learnt
Example:
“ I really did tell him what to do. and he did the opposite…..and he had said he understood “… why…. ??
He did not want to hurt you, he hoped to be praised,
but the result was the opposite. Who is responsible?

9. Own rules People with PWS need structure and limits
When we do not give structure, many try to create it themselves.
When we then try to change their own rules, without doing it clearly enough, crises arise
Routines are difficult to change, if not understood, he/she feels uncomfortable and afraid.: Security and control is taken away

10. What to do
To help… need to understand and put yourself in the place of the person with PWS
When we know and understand it is easier to help.
Because it is difficult to understand and learn: start early and create routines that can be used always, and prepare changes ahead of time

11. DAILY ROUTINES Brushing teeth upper jaw > left to right. 1 min.
lower jaw same
Washing hands
amount of soap and water?
Drying etc. How much time ?

12. The shower Hair and Body How to start, the amount of soap
Amount of water. Temperature of water
When to stop
How to dry?
Use pictures and timers
Evt. a photo of the person himself doing it

13. Clothes Underwear change every morning
Prepare in the evening for next day (clothes)
Use pictures ( if it is difficult)
Use standards for: rain
snow
sun
some need rules for +/- a jacket.
Which temperature if, they do not feel warm

14. Cleaning and tiding Show and be there the first times
All things have a fixed place in the room
Tiding and cleaning is done systematically
Same procedure each time if needed

15. Conclusion Personal hygiene can be difficult for adults:
Poor understanding of the reason
Poor body imagination
It is difficult to plan and finish a procedure
Expectations are often (too) high,
Often too little help and understanding is given
They try their best, but cannot
Worst cases: blaming and conflicts

16. Final conclusion Routines Guidelines Individual support
Stop the conflicts
Help the one with PWS to become successful
It is possible with the right help and support

17. Start early