A diagnosis of dementia will affect people in different ways. With the right information and support, people can carry on with day-to-day life and the things they enjoy doing for some time.

Talking to other people in the same situation can also help.

The PCA Support Group sends out newsletters and holds several meetings a year. These provide opportunities for people affected by PCA to meet others and share their experiences. You can email contact@raredementiasupport.org or call 020 3325 0828, you need to leave a message and you will be referred to the most appropriate team member. There is also a Facebook group for people with PCA and their families and friends.

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.

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.

You can also talk to your doctor or nurse for advice on supporting someone with PCA, or visit our Support for people affected by dementia page for details of other organisations that can help.

Here are some tips for helping someone with PCA:

  • At home, keep pathways clear by removing rugs, clutter and low furniture.
  • Adding coloured stickers to glass doors can make them more easily seen. Take care with revolving glass doors when out and about.
  • Rooms should be well-lit.
  • Try to use plain furnishings, not patterned.
  • Contrasting colours may help make objects clearer. Black and yellow seem to work well for marking edges, e.g. kitchen worktops.
  • At mealtimes, try to use plain plates and bowls, and cutlery with 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.

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.


Order health information

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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