What support is available for people affected by PPA?

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, or email contact@raredementiasupport.org.

 

The Young Dementia Network is a support group 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 local services. They also have a Facebook group: www.facebook.com/YoungDementiaNetwork.

 

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

 

The Alzheimer’s Society provides information and help for people with all forms of dementia and can tell you about local support groups in your area. Call: 0333 150 3456.

 

The PSP Association website, www.pspassociation.org.uk, 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 is affected first.

When talking to someone with PPA, there are things you can do to help them:

  • Be patient, warm and understanding.
  • Find a quiet place to talk.
  • Don’t ask more than one question at a time.
  • Acknowledge their frustration when they show it, don’t dismiss it.
  • Ask the person how you can help them communicate.
  • Speak clearly and so that the person can see you speaking.
  • Check that you have understood what they mean.
  • One-to-one conversations can work better than talking in groups.

If someone is finding eating and swallowing hard, ask your GP for a referral to a speech and language therapist to assess their swallowing.

This is really important, as there may be things they can suggest to reduce the risk of food and drinks going down the wrong way.

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.
  • Add sauces to meals.
  • 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 2023 and is due for review in April 2025. It was written by Alzheimer’s Research UK’s Information Services team and Rare Dementia Support with input from expert and lay reviewers. Please contact us if you would like a version with references.

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