Parkinson's disease and carers

Caring for someone with Parkinson's Disease (PD) can be a very long and difficult journey and people may react quite differently to the challenge. It depends on many factors such as:

• your relationship with the person prior to them developing PD;
• your own lifestyle prior to this;
• your own health and needs; and
• the level of support that you have from other people.

To be a good carer you need:

• understanding of some of the special difficulties associated with PD;
• to learn when to help and when not to;
• to allow time for the person to do things for him or her self, without hurrying;
• to not take over (e.g. do not speak for them);
• knowledge about who to go to for help in such things as aids to daily living (e.g. eating problems);
• to have survival strategies (i.e. adopt a day-by-day approach);
• to be honest in your relationship.

Carers suffer from:

• frustration;
• depression; and
• sleep disorders.

Carers need:

• information;
• encouragement;
• a listening ear;
• recognition;
• the opportunity to express frustrations;
• support;
• easy availability of treatment;
• good communication with health professionals;
• quality time away;
• access to respite care;
• emotional support;
• a good night's sleep (too many broken nights' sleep is one of the biggest problems with which carers of people with PD have to contend);
• to look after themselves and their own health;
• a sense of humour; and
• pampering from time to time.

Carer's support groups

Joining a carer's support group is one way to fulfil some of these needs. A support group consists of people who join together to give and get support and assistance in coping with a common problem. They are not a substitute for medical advice, nor are they fund-raising groups. They are simply voluntary gatherings of people who share common situations and problems and who, by sharing their experiences, support and help each other.

Some functions of carers support groups are:

• sharing mutual experiences;
• learning together;
• providing information on community support;
• educating others about the needs of people with PD and their families;
• working toward social change;
• lobbying for improved services; and
• changing attitudes in the community.

Coping with Parkinson's

• The variability of symptoms from hour to hour and day to day make it more difficult to plan ahead.
• The slowness can be a problem: many carers have to fight the urge to help, and need to encourage people with Parkinson's to do as much as they can for themselves, even if it takes longer.
• The 'one thing at a time' aspect of PD.
• Gradual changes in mobility.
• Sleep disturbance.

Communication

When you are caring for someone, good communication is most important. Communication is more than just speaking; gestures, a look, a shrug, the written word are all ways of conveying meaning to people. If the person you are caring for has difficulty with speech, these hints will help you to make the most of the communication skills they have. If necessary, sit down beside them, or preferably face them so that you can see their face and they can see yours. Suggest that before they begin to talk, they raise their head and swallow the saliva to clear their mouth. Be careful to suggest, not command. Remind them to take a breath before each phrase.

1. Ask the person to repeat, if you do not understand what they are saying. If you have understood part of the message, repeat that part so that they do not need to repeat everything.
2. Ask the person to speak more slowly if necessary. Echo their phrases to help them slow down. This also tells how much of the message is understood.
3. Remind them that you will give them time to respond.
4. Ask them to use shorter phrases or single words if it is difficult to make complete sentences.
5. Do not shout. Speak at a normal volume unless they have a known hearing loss.
6. Be aware that talking may be frustrating and tiring and that confidence may be low.
7. Try a '20-question' type approach to gauge the subject of conversation first. If the context is known, this often makes for better guessing at unclear words; or ask a question which can be answered 'yes' or 'no'. Do not ask more than one question at a time.
8. Show you have understood. Give feedback (e.g. nodding head, saying 'I see' or 'I understand').
9. Repeating or rephrasing the message shows that you have understood.
10. Let people finish. Do not try to anticipate what people are going to say. If repeated attempts at a message fail, offer a possible interpretation (e.g. 'Do you mean...?')

myDr, 2002. Reproduced with kind permission from Parkinson’s Australia.
© Copyright: myDr, UBM Medica Australia, 2000-2010. All rights reserved.

Last Reviewed: 19 July 2002