We provide you with general advice and information to help you and your family/friends to live well with PCA. Please do keep in mind that everyone does not live with PCA in the same way and factors such as the underlying condition causing PCA, age, general health, family circumstances, living environment and other factors may contribute to varied experiences.
It is highly recommended by RDS Canada members that following a diagnosis it is important to find resources to help you understand your dementia. Many people tell us that they prefer to gather information slowly. Please keep in mind that because PCA is rare, many people you interact with may not understand your dementia and its impact on your day-to-day living.
We provide some information on our website and we host webinars on PCA in partnership with RDS UK throughout the year. Our webinars are designed to connect you with up-to-date information on PCA including recent research developments. We also encourage you to think about joining our PCA support group to learn more, speak with practitioners, and connect with other Canadians who are also living with PCA. For more information on our webinars and PCA support group please register as a member.
You may be interested in A Life in the Day of PCA which is an illustrated book of poetry written by two people who are living with PCA, Martina Davis and Michael Andrews. The book is based on their own experiences of living with PCA, and highlight laughter, hope and positivity.
The book is a user-friendly read and there is a downloadable PDF and audio version included. You can purchase a copy of the book through the National Brain Appeal. Proceeds from the sale support the work of RDS UK and RDS Canada.
Some of the strategies we’ve learned through people living with PCA include visual aids and adapting your living environment
If you have experienced visual loss, there are practical visual aids that can help you. These include:
- Talking clocks and watches
- Telephones with simplified displays or pre-programmable direct-dial buttons
- Cooking aids such as sensors which beep when a cup is nearly full
- Audio books, podcasts and texts available on CD or online
- Audio guides for arts and cultural events such as theatre, galleries and museums
- Smart home devices that use voice control to turn on, for example, the radio or lights
Other visual aids may be available through the Canadian Institute for the Blind Home | CNIB Please note that not all aids for people with eye-related visual problems will be suitable for people living with PCA. PCA often involves difficulties with spatial perception (i.e., perceiving the location of an object and our body’s position in relation to them) and awareness across the senses such ‘hearing and feeling where’ not just ‘seeing where’, and in imaging what and where things are (e.g., seeing in your mind).
ReadClear is a new e-reader developed by Dr. Aida Suárez González and colleagues at University College London, and people living with PCA. Aida’s research demonstrates that ReadClear can make reading easier and more pleasant. For more information on ReadClear Read Clear App - Making Reading Real
To make the most of adapting your environment we encourage you to speak to an Occupational Therapist who can assist you.
People living with PCA tell us the shiny and transparent surfaces, lack of contrast, excessive or low lighting (and shadows), and clutter can make it difficult to navigate around the home or going to other environments such as a friend’s home or going to the shopping mall.
There are simple ways that may help you.
Simplify your environment:
- keep pathways clear by removing unused objects or any clutter
- minimize slip hazards such as rugs or door mats by removing them or securing them with a rubber backing
- round off or protect any sharp edges (carpet tape)
- relocate or remove any hanging cords
- install grab bars in the bathroom
- keep things you use daily handy (e.g., toothbrush, hairbrush)
- consider purchasing an all-in-one shampoo/conditioner
- consider installing a raised toilet seat with arms
- label drawers
- minimize the number of buttons or zippers on your clothes
- put an elastic band around your socks or shoes to keep the pair together
- use appliances with an automatic shut off
- use the same route during your walk or ask a family member or friend to accompany you
Use lighting, colour and contrast:
- put your lights on before it gets dark and ensure you have plenty of good lighting in key areas such as the kitchen, bathroom and stairs
- avoid using bare light bulbs by covering them with lampshades
- consider minimizing any lighting that may cause a glare or shadows
- consider marking pathways, for example, from the bedroom to the bathroom (e.g., night lights, colour adhesive tape)
- paint door frames or light switch plates with a contrasting colour so they can be seen
- use solid colours (e.g., dishes, napkins, tablecloth) rather than patterns
The Royal National Institute for Blind People and The Thomas Pocklington Trust (UK) have produced a guide to improve lighting in your home that you may find helpful.
As PCA progresses, people may retain an understanding of the purpose of everyday activities but may need significant help as their visual impairment progresses. You may have difficulty with tasks such as:
- cooking or dressing
- reading labels
- handling money
- telling the time
- walking or sitting down
- distinguishing between moving and static objects
- navigating both familiar and unfamiliar environments
- recognizing familiar faces
- eating with cutlery or other tasks requiring hand eye coordination
- finding words to express oneself
- memory and word finding
- difficulty sensing the position of different body parts
As PCA continues to progress vision can become severely impaired. The world may be viewed in a distorted way. This can lead to needing help with most daily tasks, having difficulty executing spatial commands such as ‘turn around’ or ‘step back’, and requiring supervision during periods of walking given difficulties in seeing curbs, paths or steps and a tendency to shuffle or stoop.
Some people may have problems with other senses such as:
increased sensitivity to pain and temperature
changes in the sense of hearing such as becoming more sensitive to certain sounds
sense of imbalance or instability
experiencing small jerking movements
In the later stages of PCA you may lose the ability to respond to your environment, carry on a conversation or control movement. In the advanced stages symptoms and care needs continue to progress. You may:
- need help with your personal care
- need help to sit up
- be inconsistent with your recollection of events or plans
- have difficulty communicating
- experience changes in sleeping patterns
- have trouble controlling your bladder and bowels
- experience behaviour and personality changes
- experience further loss of sensory functions