Innovative projects - Start Making SenseMany people find information hard to understand. People with dementia may find information more difficult to understand as their dementia progresses. One reason for this is brain damage, caused by dementia. But another reason is that information is poorly written or laid out. Our work called ‘Start Making Sense’ aims to:
Complaining about information that you can’t understandInnovations in Dementia CIC has produced a guide to help people with dementia complain about information that they find difficult to understand. Under the Disability Discrimination Act, service providers have to make sure that their services are easier for disabled people to use. People with dementia qualify as 'disabled' under the Act so long as the dementia has an effect on their ability to carry out 'normal day-to-day' activities. There are three steps to making a complaint:
Find out more about our guide to complaining about information that you can't understand. What do we mean by information?For us, information is any way of ensuring that a message is received and understood. In our complicated world we receive information in lots of ways. For
example a simple shopping trip involves understanding lots of bits of
But there are many other ways to ‘go shopping’. Shopping may also involve looking at advertisements in newspapers, looking at a mail order catalogue, or searching the internet. Recent research by the government’s Office for Disability Issues found that many people have trouble understanding or making themselves understood when trying to access goods and services. What people with dementia have told usIn February 2009, a small group of people with dementia from London and
South East England met to discuss the information they use.
The group identified lots of different sources of information that they
use. These including newspapers and magazine, advertisements, the telephone,
TV and radio, friends and professional advisers, flyers and The group stressed that each person was different – but everyone
agreed that some things were more difficult that others. For example,
everyone in the group would like to use technologies such as the Many people at the meeting had given up on activities that were too
confusing. For example, many people at the meeting didn’t like going
on the London Underground and others had given up going to leisure activities
such as the theatre. There was a big discussion about how useful face-to-face information from people can be. Most of the group would turn to friends and relatives for advice and information. Some people found that the staff in their local shops were very helpful – especially if they were told that their customer had Alzheimer’s disease. However, others felt that asking for help could be difficult if staff didn’t have the right attitude or training. Others pointed out that sometimes there are no staff to be found! Maps and symbolsIn March 2009, three people with dementia agreed to help us look at different services that use maps and symbols:
Symbols and maps are not a new invention. For example, the first tube map was devised in 1931. However, symbols are used a lot in modern culture and most young people have no problem understanding them. Mick, Manuela and Graham had different experiences of using maps and symbols. Mick’s experience of using the map of the Underground Mick agreed to go with Nada on a journey on the Underground to investigate what he found difficult about using the system. The journey Mick chose was from Charing Cross station to Putney Bridge station. The first thing Mick did was to try to find Charing Cross station on the large map of the Underground network. Mick found it very difficult to locate the station on the map. He found all the different symbols confusing. Once on the Underground train, the map of the district line alone was no easier to use Manuela’s experience of using the map at the Tate Britain
gallery Manuela has Alzheimer’s disease and is the sort of person who has
always asked people for directions. But on this occasion, she kindly attempted
to use the map provided by the gallery. Manuela had problems using the map to establish where she was and where she could go. The map gave each room in the gallery a number – but Manuela couldn’t find the numbers on the walls. The signs on the walls to different parts of the gallery were small, high up and difficult to read.
Graham’s experience of travel agents’ brochures
In January 2009 we were awarded a development grant by the Big Lottery. This grant funded much of the work above. We submmitted an application for funding for a much bigger three-year project, but unfortunately we were not successful. Many people with dementia helped us to develop the project plan, which involved working with the Rix Centre, which is part of the University of East London, and with commercial organisations such as bus companies or supermarkets. November 2009 Contact usWe are looking for partners and funders to take this work further. Innovations in Dementia CIC, PO Box 616, Exeter, EX1 9JB Registered as a community interest company No. 06046815. © Innovations in dementia CIC 2008
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The
map used various symbols to indicate things like ‘no smoking’
and ‘no eating’. Manuela found these difficult to understand
and wonders if this is because of her age or because of her dementia.
Manuela thinks it would better to use words to get across messages such
as ‘no smoking’.
He
also had a look at some of the holiday brochures in the shop. Graham picked
out the brochures featuring symbols as being particularly useful. The
symbols were used to indicate temperature, activities available and type
of holiday. He also liked brochures that showed maps of the country or
the resort.