FOR CARERS

Carers play an important role in the care and support of someone with Parkinson’s. They are often partners and family members, but could also be friends or neighbours. Many carers who provide care and support will not view themselves as a “carer”. First and foremost they will view themselves as a wife, a husband, son, daughter or partner. 

 

Caring for someone with Parkinson’s can be a very long and difficult journey and people may react quite differently to the challenge. ​ Make sure you take time to look after yourself as much as possible.

                         

It depends on many factors such as: 

  • Your relationship with the person prior to them developing Parkinson’s;

  • Your own lifestyle prior to this diagnosis;

  • Your own health and needs; and

  • The level of support that you have from other people.

To be a good carer you need:

  • an understanding of some of the special difficulties associated with Parkinson’s;

  • to learn when to help and when not to;

  • to allow time for the person to do things for him or herself, 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); and

  • to be honest in your relationship.

Carers can suffer from:

  • frustration and even anger

  • depression

  • sleep disorders

 

Carers need:

  • information and support

  • encouragement

  • a listening ear

  • recognition

  • opportunity to express frustrations

  • good communication with health professionals

  • quality time away and access to respite care

  • a good night’s sleep (too many broken night’s 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

  • pampering from time to time

Communication

Communication is key to caring for anyone.

 

As a carer, you are not likely to be the only person involved in that person’s Parkinson’s journey so developing good relationships with all key stakeholders involved in their care is paramount. Some of the people you may need to connect with to provide best quality care are:

  • Family & Friends

  • Specialists (Neurologist, Gerontologist, etc), General Practitioners, Nurses

  • Allied Health Professionals e.g. Physiotherapists, Occupational Therapists, Speech Therapists, Social Workers, Psychologists, Dietitians etc.

 

You may come across communication barriers the person you are caring for is having with their own communication because of their Parkinson’s. Some of these communication barriers and symptoms you may see are detailed on the Communication & Parkinson's information sheet.

A few other tips that may be helpful to carers of people living with Parkinson’s:

 

1. Have patience

2. Speak to a person with clear tone and timing. You do not need to speak louder (unless you are aware that they have a known hearing impairment)

3. Speak slowly enough for that person. Repeat their turn of phrase to also help them slow their speech down

 

4. Provide time for them to respond to any questions

5. Encourage them to use single words or short word phrasing so their message is clearly conveyed 

6. Provide empathy as often communicating for a person living with Parkinson’s may leave them with a loss of confidence in addition to being frustrating and exhausting

7. Where appropriate, try asking closed-ended questions where people can answer simple “yes and no” answers

8. Always acknowledge when you have understood their questions and communication (e.g. nodding your head and saying “thank you”)

9. Provide time for the person to finish their conversation and/or question.  

 
 

 

HELPING YOU HELP OTHERS

 

Carer 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.

 

You can get information on whether there is a carer support group near you by ringing the Parkinson’s Info Line on 1800 644 189.

Carers Fact Sheets

 

Carer's Australia has produced an excellent online resource called "Surviving the Maze" with over 60 fact sheets to assist carers to navigate the service system of community support.

Palliative Care Training

The Australian Healthcare and Hospitals Association have re-launched the Palliative Care Online Training Portal, funded by the Australian Government. 

 

The Portal provides free, non-clinical, interactive training to carers, community & aged care workers, students, volunteers, family members and clinicians who want to build their skills if they are caring for someone with a life-limiting illness.

 

To date this training has been delivered to over 35,000 people and covers topics such as:

  • the needs of people and their families as they approach end-of-life;

  • assessment skills;

  • end-of-life conversations;

  • self-care and building resilience;

  • pain management;

  • and recognising deteriorating patients.

 

The Palliative Care Online Training Portal is available at www.pallcaretraining.com.au  

 

Registration is free and there are no time restrictions for completion of the modules.​

Aged Care Training

 

Parkinson’s Australia’s Aged Care Training Package called Caring for People with Parkinson’s is now available. It is designed to educate and inform all the staff of Residential Aged Care Facilities to improve the quality of care provided for residents living with Parkinson’s. 

 

The training package is evidence based, with clearly stated and measurable learning outcomes, while incorporating the principles of best practice in care and utilizes a person-centred approach.

Learning Outcomes

  1. Increase the awareness and knowledge of the signs, symptoms and treatments of Parkinson’s disease.

  2. Increase the understanding of the needs of someone living with Parkinson’s.

  3. Increase the capacity of staff in providing care for someone living with Parkinson’s.

This training package is run through the state/territory Parkinson's organisations.  Contact your state/territory  organisation (click on website links top right of this page) for further details or phone 1800 644 189.

The content of this web site is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice. 

© 2020 by Parkinson's Australia, PO Box 108, Deakin West, ACT 2600

ABN 46 011 714 078   

Parkinson's Australia Privacy Policy

Search this site