PERSONAL HYGIENE IN PWS September 2017 Susanne Blichfeldt MD. Denmark

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

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

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

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

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.

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

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?

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

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

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 ?

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

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

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

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

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

Start early