A diagnosis of primary progressive aphasia will affect people in different ways and can come as a shock. With the right information and support, people can carry on with their day to day lives for some time.

People affected by PPA and their families may need time to come to terms with a diagnosis. Some people find that talking to others in the same situation can help.

The national PPA Support Group holds several meetings a year in London, helping people living with PPA to meet and talk to others. Visit the PPA Support Group website at www.raredementiasupport.org/primary-progressive-aphasia, email contact@raredementiasupport.org or call 020 3325 0828.

The Young Dementia Network provides support for people under 65 with any form of dementia, and their families. Their website, www.youngdementianetwork.org has a range of resources, including information about support and local services. They also have a Facebook group: www.facebook.com/YoungDementiaNetwork.

The Admiral Nurse Dementia Helpline at Dementia UK offers practical and emotional support to anyone affected by dementia, including advice on managing the symptoms. Call 0800 888 6678.

The PSP Association website, has some helpful resources and an online forum. PSP (Progressive Supranuclear Palsy) is a type of dementia, with some similarities to Parkinson’s disease, but some of the symptoms are also similar to non-fluent PPA, including speech and swallowing problems.

You can also talk to your doctor or nurse for advice on caring for someone with PPA.

 

Supporting someone with PPA

For people with any type of PPA, their speech and language are affected first. When talking to someone with PPA, there are things you can do to help them:

  • Be patient and understanding.
  • Find a quiet place to talk.
  • Don’t try to finish a person’s words unless they ask you to help.
  • Speak clearly and so that the person can see you speaking.
  • Check that you have understood what they mean.
  • One-to-one conversations generally work better than talking in groups.
  • If the person starts to find talking hard, take a break so they can rest.
  • They may find it easier to write things down or use an electronic aid than to talk.

 

If someone is finding eating and swallowing hard, these may help:

  • Try not to have foods that require a lot of chewing like thick pieces of meat.
  • Cut food up into small, manageable pieces.
  • If food is getting stuck in the throat, avoid dry and crumbly foods. Add sauces to meals and make sure people have plenty of water to drink with their food.
  • If eating becomes slower, a plate-warmer will help to keep food warm and nicer to eat.

Over time, someone with PPA will need more help with day-to-day life, for example with washing and dressing. It is important to think about safety at home and any changes you may need to make. For people still working, PPA may make doing a job more difficult. It is helpful to talk to close family, early on, about options such as lasting power of attorney, and later, home care and care homes. Driving safety is also important. You should let the DVLA know if you or a family member is diagnosed with any form of dementia.

Support for people affected by dementia

This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.

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This information was written in April 2021 and is due for review in April 2023. Please contact us if you would like a version with references.

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