A diagnosis of PPA will affect people in different ways, and they may need time to get used to it. With the right information and support, people can carry on with regular aspects of their lives for some time.

A diagnosis of PPA will affect people in different ways, and they may need time to get used to it. With the right information and support, people can carry on with regular aspects of their lives for some time. Talking to other people in the same situation can help.

The PPA Support Group holds several meetings a year in London, helping people living with PPA to meet and talk to others. You can contact them by email at contact@raredementiasupport.org or call 07388 220355.

YoungDementia UK is a charity offering support for people under 65 with any form of dementia, and their families. Their website has a range of resources, including information about local services. Call 01865 794311. They also have a Facebook group.

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.

Alzheimer’s Society provides information and help for people with all forms of dementia, and can tell you about local support groups and Dementia Cafés in your area. Call 0300 222 1122.

The PSP Association website has some helpful resources and an online forum. PSP (progressive supranuclear palsy) is a different condition, but some of the symptoms are similar, including speech and swallowing problems, and occasionally PSP can begin with PPA.

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

With all types of PPA, speech or language is 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 loudly and clearly.
  • Check that you have understood what they mean.
  • One-to-one conversations may 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 ideas may help:

  • Try to avoid foods like thick pieces of meat, or cook them slowly so they are easier to chew and swallow.
  • 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.

With time, someone with PPA will need more help with day-to-day life. It is important to think about safety at home and any changes you may need to make. In those of working age, PPA may make working life 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.

For organisations offering help and support, visit our Support for people affected by dementia page.

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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Alzheimer’s Research UK has a wide range of information about dementia. Order booklets or download them from our online form.

This information was written in April 2019 and is due for review in April 2021. Please contact us if you would like a version with references.

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