Living with dementia magazine February 2011

From preparing breakfast in bed to sorting socks, Graham and Susan Doggett share the many tips they have developed along the way to compensate for Graham's sight loss, caused by PCA, and help him to remain independent.

More than 100,000 people aged over 75 have both dementia and sight loss, according to statistics published in December*. Graham Doggett, 72, is one of these people. He has PCA (posterior cortical atrophy), a rare form of Alzheimer's disease that damages brain cells focused in the back region of the brain, which is responsible for visual processing. The most common problem in individuals with PCA is with vision, rather than memory.

Here, Graham and his wife, Susan, share their many tips in the hope they will help others with dementia and sight loss.

Compensating for sight loss

• As a former academic, Graham was an avid reader. As he can no longer read, he now uses audio books, which are available from most libraries or the RNIB (see below). Alternatively, you could ask a friend or volunteer to read to you.
• Radio programmes help you keep in touch with the world, especially if you can no longer watch TV or read the paper.
• If you struggle to recognise people, ask them to introduce themselves verbally and explain why.
• Cooking can be an enjoyable activity if it is made easy. For example, stir-fries are easy using pre-chopped vegetables, pre-cooked meat or fish and ready-made sauces. Graham is now a dab hand at this (though marmalade stir fry was an unexpected flavour!)
• Breakfast in bed is a treat. We prepare a tray with a non-slip base the night before. Graham puts water in the teapot by standing it on the draining board. He feels the stair treads with his feet and counts the stairs each time.
• If you need to use a computer, ask a grandchild or young person you know to help. They can be invaluable in putting spoken words, for example life history, into print.
  

Adaptations in the home

• Enhanced daylight lamps are very helpful. Local authority sensory units will visit your home and advise on appropriate equipment. A sensor light, which is movement activated, is helpful when using the bathroom at night.
• Try to avoid clutter. We keep furniture to a minimum and don't rearrange things often. Mirrors can cause confusion.
• Keep safe. Grab rails, bath aids and possibly stair gates (to avoid falling downstairs if disorientated at night) can be provided through your occupational therapist. Speak to your GP in the first instance.

Practical aids

• Get registered as blind/partially sighted and use your white stick as a marker. We find people are very helpful when we're out walking or travelling.
• Talking watches can help people to stay independent (RNIB). 
• A radar key for disabled toilets is invaluable at service and railways stations. They are available from your local council and cost around £2.
• The RNIB produces many cooking aids for kitchen safety.
• Supermarkets sell prepaid money cards if handling money is difficult. Coin holders help to identify coins (RNIB). 
• Dressing can be difficult. Carers can help by colour-coding shirts, socks and pullovers. Socks can be paired and put into black, green or blue bags to help speed up dressing. Shoes with Velcro fastenings are easier than laces, and clothes without buttons may be easier.

Dealing with frustrations

• Join any appropriate group, such as an Alzheimer's Society café or support group or visually impaired group. You will pick up valuable information from others. Laughter is also a good tonic and groups of like-minded people can often laugh at mishaps without feeling embarrassed.
• If you belong to a group with a newsletter or magazine, for example the church, pub, online forum or other social group, you could write an article to help people understand your difficulties.
• Continue with any activity that is still possible. Graham still walks with friends and attends the U3A music appreciation group and concerts.
• Carers: try not to take over! Encourage the person you care for to do as much as they can. At the end of the day, we always ask what we have both achieved.
  
• Try not to fret about what you can no longer do. Instead, concentrate on what you now enjoy.
• We now use coaches for holidays. They are much less stressful and you have a ready-made group of companions.

Useful information

Dementia and Sight Loss Interest Group

Alzheimer's Society, RNIB and the Thomas Pocklington Trust (a charity providing housing, care and support for people with sight loss in the UK - 020 8995 0880) have formed the Dementia and Sight Loss Interest Group. For more information about the group and support, contact Clive Evers on 020 7423 3586.
The RNIB helpline number is 0303 123 9999.
The National Hospital for Neurology and Neurosurgery in London runs a PCA support group offering advice and socialising opportunities for people with PCA and their families. Call 0845 155 500 (ext 723113) or visit www.pcasupport.ucl.ac.uk

For a free copy of the Society's factsheet, What is posterior cortical atrophy (PCA)? (479) call Xcalibre on 01628 529240, or see alzheimers.org.uk/factsheets

Symptoms of PCA include:

• difficulty recognising faces or objects in pictures
• decline in spatial awareness, for example in judging distances and speeds
• difficulties in handwriting or reading
• slowness and difficulty with mental arithmetic
• problems dealing with money and small change
• difficulties with co-ordination.
  

*Dementia and serious sight loss by Prof. Roy Jones and Dr Richard Trigg.
Thomas Pocklington Trust Occasional Paper February 2007 No.11.
www.pocklington-trust.org.uk/Resources/Thomas%20Pocklington/Documents/PDF/Research%20Publications/OP11.pdf