Listen to our information about support for PCA or download the full audio

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A diagnosis of PCA can leave a person with many questions. With the right information and support, people can live well and carry on doing the things they enjoy doing for some time. Talking to other people in the same situation can also help.

The Rare Dementia PCA Support Group sends out newsletters and holds meetings across different parts of the country. These Support Group meetings provide opportunities for people affected by PCA to meet others and share their experiences. There is also a supportive Facebook group (search ‘Posterior cortical atrophy awareness’).

You can contact them by email contact@raredementiasupport.org.

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.

Some people with PCA may benefit from using visual aids and resources for people with sight problems. For more information about visual aids and for support, contact the Royal National Institute of Blind People at helpline@rnib.org.uk or call 0303 123 9999.

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

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

Living with PCA

Some people with PCA may benefit from using visual aids and resources for people with sight problems. These may include audio books, devices with large and simple displays, voice recognition software and walking aids. People may choose to carry a symbol cane to let others know they have sight problems.

For more information about visual aids and for support, contact the Royal National Institute of Blind People at helpline@rnib.org.uk or call 0303 123 9999.

People may also need to make changes to their home to help them stay independent and move around safely. There is some evidence that reading aids and home adaptations that support independent activities for people living with PCA can help. Here are some more ways to help someone living with PCA:

  • At home, keep pathways clear by removing rugs, clutter and low furniture.
  • Adding coloured stickers to glass doors can help someone see them more easily.
  • Rooms should be well-lit. In the evenings or at night, nightlights may be helpful.
  • Grab-bars in the bathroom and non-slip mats in the kitchen can be useful for safety and independence.
  • Try to use plain furnishings, not patterned.
  • Contrasting colours (for example, black and yellow) may help make objects clearer and mark edges, e.g. steps or kitchen worktops.
  • At mealtimes, try to use plain plates and bowls, and cutlery with bright coloured handles may also help.
  • Use a plain tablecloth and set out the plate, glass, etc. in the same way each time.
  • Outdoors, different coloured paving may look like steps so try to let the person know that it is flat.

It's important to remember that every person's experience with PCA is unique, and what works for one person may not work for another. You can find out more about supporting someone with PCA by contacting Rare Dementia Support by emailing contact@raredementiasupport.org for details.

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 updated in April 2023 and is due to be reviewed in April 2025. It was written by Alzheimer’s Research UK’s Information Services team in association with Rare Dementia Support, with input from expert and lay reviewers. Please get in touch using the contact details below if you’d like a version with references or in a different format.

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