This page is designed to provide guidance to help manage some of the day-to-day experiences and symptoms of posterior cortical atrophy (PCA).
Support
Receiving a diagnosis of PCA can be isolating and can have an impact on family members, friends and carers. It is really important that the right support is available, not only for the person with PCA, but also for their loved ones. Our support group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
People living with PCA and their friends and family are welcome to join our London support group meetings, our virtual meetings or to see what regional support groups might be available. Please visit our Meetings page for details of upcoming meetings.
It is important to note that, as PCA is rare, many healthcare services do not have much experience supporting people with PCA. However, you may still find it helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers.
Strategies for managing PCA
There are certain strategies that people have found useful to help them manage the symptoms of PCA.
We understand that everyone affected by PCA experiences it differently and what works for some may not work for others. The tools and strategies suggested below have been shared by PCA Support Group members and other relevant organisations.
Visual aids
If you’ve experienced some visual loss, there are some practical visual aids that can help you.
These include:
- talking clocks and watches
- mobile telephones with simplified displays or pre-programmable direct-dial buttons
- cooking aids such as sensors which beep when a cup is nearly full
There are also audio books, podcasts and texts available on CD or online. Audio guides are often available for arts and cultural events and experiences such as theatre, galleries and museums.
For advice on aids for visual impairment, visit the Royal National Institute for Blind People (RNIB) website, where there is also advice on using computers, telephones and other technologies.
Please note that not all aids for people with eye-related visual problems will be suitable for people with PCA. This is because PCA often involves difficulties with spatial perception and awareness across the senses (such as ‘hearing’ and ‘feeling’ where, not just seeing where) and in imagining what and where things are (seeing in your mind’s eye). However, many of our support group members have found off-the-shelf visual aids helpful for a time.
Adapting your home
Some of the symptoms of PCA might make it difficult for your accessibility in your own home. This can affect your safety and independence. Factors such as shiny and transparent surfaces, a lack of contrast, excessive or low lighting and clutter can make it difficult for someone with PCA to confidently get around. There are ways to adapt your home to overcome these challenges.
Simplify the environment:
- keep pathways clear; remove unused objects and clutter
- remove slip hazards such as rugs and mats with rubber backing
- round off sharp or hard edges with tape
Use lighting, colour and contrast:
- leave lights on before it gets dark and ensure that there is plenty of lighting in key areas such as on stairs and in bathrooms
- avoid using bare light bulbs: cover all bulbs with lampshades. Consider minimising lighting that could create glare or stark shadows
- mark pathways to important areas (such as the bathroom, kitchen and bedroom)
- paint doorframes and light switch plates in a contrasting colour to the wall so they can be seen easily
- You can find more suggestions on this factsheet, including advice on adapting specific rooms (for example, bathroom and bedroom) and on performing routine tasks (such as eating, dressing and using the telephone). You may also find our FAQs section useful.
Another useful reference is this “Improve the lighting in your home” guide produced by the RNIB and Thomas Pocklington Trust. There is more advice about lighting and design on the Pocklington Trust website.
Treatment
There is no medication available to treat PCA specifically and the underlying cause of PCA will affect which treatments you may find useful. Some people find some of the medication for people with typical Alzheimer’s disease helpful. This includes acetyl cholinesterase inhibitors such as donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl). It is important to note, however, that these medications are designed to manage the symptoms of the disease. They are not a cure.
You can find more advice on treatments for Alzheimer’s disease on the Alzheimer’s Society website.
People living with PCA often show preserved insight but can sometimes have difficulty engaging with the world around them. This can affect favourite activities (like reading) and can be frustrating and isolating. People living with PCA who experience persistent low mood or depression might benefit from antidepressant medication or psychological therapies.
People experiencing movement difficulties as a result of PCA might also benefit from certain treatments used to treat parkinsonism.
Please note that you should always speak to your GP or healthcare professional before taking any medical treatment.
How the symptoms of PCA may progress
As PCA progresses you may notice an increase in the number or impact of the symptoms. It is also important to remember that the experience of PCA differs from one person to the next.
Mid to later stage symptoms
In the mid-stages, people living with PCA may retain understanding of the purpose of everyday activities, but they may need significant help as their visual impairment progresses.
They might have difficulty with:
- cooking, dressing and using appliances
- reading labels (on food products, for example)
- handling money and change
- telling the time
- walking and/or sitting down
- distinguishing between moving and static objects (such as when watching TV)
- navigating familiar and unfamiliar environments (including the home and/or outdoors)
- recognising familiar faces
- eating with cutlery, and physical tasks requiring hand eye coordination
- finding words to express oneself
- following and engaging in group conversations
- memory and word finding (although many people retain considerable awareness of their situation)
- difficulty sensing the position of different body parts
As PCA progresses, vision can become severely impaired. The world may be viewed in a distorted way (for example, as pieces of a puzzle or as if through a fractured mirror). The person may notice small details but struggle to understand the relationship between objects in a given space.
This can lead to:
- requiring help with most or all everyday tasks (including personal care owing to difficulties with visual and spatial awareness)
- difficulty executing spatial commands and actions (such as ‘turn round’, ‘step forwards’)
- requiring support or supervision when walking (difficulty in detecting the edges of pavements, paths, and steps; a tendency to shuffle, stoop or lean)
At this stage, many people with PCA are registered as blind, which means that they need help with most visually-guided activities.
Some people may have problems with other senses, including:
- increased sensitivity to pain and temperature (especially in the head, hands and feet)
- changes in the sense of hearing (such as becoming more sensitive to certain sounds)
- sense of imbalance or instability
- experiencing little jerky movements
It can help to speak to others in similar situations who may be able to offer support and helpful advice. Our PCA Support Group meetings are open to anyone affected by PCA, including those living with a diagnosis, carers, family and friends. You can find out about upcoming meetings on our Meetings page.
