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.

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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.

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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

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Communication

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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:

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• 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.

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

 

1. Have patience

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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)

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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

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

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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

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

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

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