Improving the lives of people with aphasia and their families

 
 
 
   
 

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Having aphasia after a stroke or brain injury is a very traumatic experience, not only for the survivor but also for family, friends and carers. Families need support and information on how to cope with aphasia, and how to support their loved one with aphasia.

Important things to remember for the person with aphasia:

  • Aphasia disrupts language and communication. Aphasia does not mean loss of intelligence, thoughts or memory. Click here to check out the information on aphasia under the support page.
  • Aphasia doesn’t as a rule, change a person’s pre-aphasic character: their fundamental preferences and personality remain the same.
  • Talking and communication may be difficult or different. Practise the strategies that the Speech Pathologist has taught you. For some people this comes naturally, but for most they really need time and practice to work out what works best.
  • Communication is not just about talking. Communication involves body language, facial expression, gesture, intonation in the voice, pointing, sharing, reading, writing and doing things together. A person with aphasia may not speak a message clearly or accurately but can still convey a message effectively in other ways. Sometimes a look can say a “thousand words”, or pointing and gesturing can convey a message perfectly.
  • People with aphasia may find they can’t concentrate for long, and need more rest or sleep. They may fatigue more easily. Noisy environments can make it hard to talk and concentrate. Communicating can be tiring.
  • Allow extra time for everyday activities.
  • Remember aphasia recovery can be slow. Improvements in language, and changes and adjustments with effective communication can continue for years. Evidence suggests that neural pathways in the brain can continue to make new connections even after a stroke or brain injury.

Early stages of aphasia:

  • Limit visitors to one or two at a time. One-to-one communication is often easier. Two visitors may take the pressure off the person with aphasia if they are struggling to communicate. Large groups of family visiting can make communication more difficult, especially if there is noise and lots of talking all happening at once.
  • Allow quiet time and rest. Talking and communicating can be tiring.
  • Speak to the Speech Pathologist about how best you can communicate with the person with aphasia. Ask them to demonstrate and teach you the strategies, rather than just provide a list of “do’s and don’ts”.
  • Be prepared to ask the doctor and therapists for information about what’s happening, what you can expect, and what you can do to help.

Family changes and role changes

Partners and family may feel uncomfortable or overwhelmed with suddenly finding themselves in the role of “carer”. They may not feel qualified or confident to take on the role. This is normal to feel like this.

After the initial shock and fear of someone acquiring aphasia, family members may need to reorganise their lives and the roles they play within the family. This may mean an increased workload for the primary carer and the family.

The severity of aphasia can vary greatly, as can the presence and severity of physical disability. Having a stroke or brain injury, as well as aphasia, may impact on:

  • home duties
  • shopping
  • managing finances
  • making and receiving phone calls
  • providing transport
  • managing appointments
  • personal care
  • recreation
  • relationships with friends/family
  • parenting roles
  • employment
  • income status.

The importance of the primary carer taking breaks and accepting help is critical. Support from family and friends can be invaluable in the early days of recovery as well as long term.

Children who have a parent with aphasia

Young children and teenagers of people with aphasia may have trouble understanding aphasia and may need lots of support. It is important to maintain and enhance the relationship between children and the person with aphasia while supporting them through their grief. Children’s roles may change when a parent or relative suffers a brain injury. They may be required to become more independent, care for the person with aphasia, and take on additional responsibilities around the home.

 

 
     
     
     
 
  Telephoning: 08 8443 5555 The Talkback Association for Aphasia Inc.
302 South Road, Hilton.
South Australia, 5033
talkback@aphasia.asn.au