guide to caring who I am practical


who I am

My name is:

I like to be called:

I wear glasses I use a hearing aid

My first language is:

My belief or faith is:


The help and walking aids I need:

Eating and Drinking

What I like/don’t like to eat:

Likes and dislikes

Things that make me feel calm:

Things that make me anxious/distressed:

Facts about my life/hobbies /interests /family that

I would like you to know.

Who to call for more information about me:

Do you know about my personal requests regarding medical treatment or a living will?


guide to caring

‘I have difficulty not only seeing but also understanding what and where things are (e.g. difficulty telling left from right, forwards from backwards etc). Please be patient with me if you need me to stand, sit, move, roll over etc as I may not always know exactly what you want me to do.’

Simplify the environment

• Remove clutter / low furniture and keep path-ways clear

• Make sure there is good lighting and that lights are on before dark

• Reduce glare in brightly lit areas

• Cover large mirrors if necessary I may not recognise it as a mirror

• Keep furnishings plain. Avoid patterns

• Place colourful stickers on large windows to prevent me from walking into them

• Label doors/drawers/cupboards, using yellow paper with black writing. Teach them to me

• Use contrasting colours to make objects clear

• Use sticky tape/dots to mark important objects ( black on yellow is the best contrast)


• Use plates and bowls without patterns

• Avoid patterned table cloths

• Use cutlery with coloured handles

• Tell me gently and in a friendly way where my food is and encourage me to eat

• Put my plates, glass etc. in same place for every meal



‘I have PCA ( Posterior Cortical Atrophy ) .

This affects my vision and thinking. I would appreciate your help.’

living with

posterior cortical

This leaflet explains what PCA

(Posterior Cortical Atrophy) is and some ways in which you can help me.

For more information about PCA

(Posterior Cortical Atrophy) please visit:



what is


P osterior cortical atrophy (PCA) , also known as

Benson’s syndrome, is a progressive degenerative condition causing damage to brain cells at the back

(posterior) of the brain, the region responsible for processing what we see. This damage to brain cells results in loss of volume or ‘atrophy’ of the brain in the posterior cortical regions - hence the name.

PCA is sometimes described as an atypical variant of

Alzheimer’s disease.

The effects of PCA and typical Alzheimer’s disease on behaviour, thought processes and skills are very different.

Individuals with PCA tend initially to have well-preserved memory but show a decline in vision, and experience difficulties with performing skilled movements and with reading and writing. This is due to the brain not being able to interpret and process information received from the eyes.

Typical Alzheimer’s disease is most commonly associated with loss of memory, followed by gradual progressive decline in other areas including language, calculation, planning, and perceptual skills.

As PCA progresses, damage may spread to other parts of the brain causing people with later-stage PCA to show more general symptoms of dementia including memory problems.


Please treat me with Dignity

• I am an individual who still has feelings, personality, and a sense of humour

• I may say things very directly without meaning to be rude or hurtful

• I welcome your care and support

• I fear disability and indignity more than death

Please be patient and calm

• I may not be able to see well or give you eye contact

• Please take my hand and speak my name when you wish to speak to me. Tell me your name

• Please be patient as I may take time to respond to a questions

• It will help me to feel relaxed if you smile and appear friendly and caring

Practical areas where you can help me

• Do not assume I can see you or anything around me

• I may need help with dressing/eating/personal care and getting from one place to another

• I may not understand quickly –please show me

• I may become frustrated because I cannot do what

I would like to do and may not find the words to explain how I feel/ what I would like to do

• I may get anxious about forgetting things.

Please remind and reassure me

• Make sure I take my pills at the same time every day


• Problems with vision

• Difficulty recognising familiar objects and faces

• Difficulty reading, writing, emailing

• Increased sensitivity to bright lights/shiny surfaces

• Difficulty with dressing

• Double vision

• Decline in spatial awareness

• Difficulty judging distance /speed/ perspective

• Stationary objects may appear to move

• Difficulties with co-ordination

• Difficulty using particular tools i.e. cutlery

• Problems with dressing /undressing

• Difficulty finding the chair when sitting down

• Awkwardness when making gestures