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Innovative projects - Start Making Sense

Many 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:

  • Find out how information can be provided in a way that is helpful for people with dementia.
  • Encourage people with dementia and their allies to ask for accessible information.
  • Make people aware of the rights of people with dementia to accessible information.


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
information:

  • Signposts on the street.
  • Displays in shop windows.
  • Signs about shop opening times.
  • Labels on supermarket aisles and shelves.
  • Instructions for paying.

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 us

In February 2009, a small group of people with dementia from London and South East England met to discuss the information they use.
They talked about:

  • Shopping
  • Using public transport
  • Going to sports, leisure or arts venues.
  • Finding out about issues around their dementia.

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
billboards, leaflets, maps and books.

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
internet. However, they all felt that many technologies were too complicated.

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.

“Anything for an easy life”
People said they liked routine and familiar places and routes. People tended to avoid complicated situations and found easier ways to do things. For example, buying a train ticket on the train, rather than at the ticket office or over the phone.

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 symbols

In March 2009, three people with dementia agreed to help us look at different services that use maps and symbols:

  • Mick investigated using the London Underground,
  • Manuela investigated visiting an art gallery, and
  • Graham investigated travel agents and the brochures they provide.

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 has Alzheimer’s disease and used to use the London Underground frequently to get to work. More recently, Mick has avoided using the London Underground because he has found it complicated and sometimes frightening.People with dementia may have problems with maps

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 agreed to visit the Tate Britain art gallery in London with
Nada.

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.Illustration of female toilet sign

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.

Illustration of no smoking signThe 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’.

Graham’s experience of travel agents’ brochures
Graham has Pick’s disease. Nada and he visited different travel agent shops in Brighton one day in March. Graham asked the travel advisors various questions about how they would help someone with dementia with their holiday plans.

Illustration of weather symbolsHe 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.


Supported by the National Lottery through the Big Lottery Fund

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 us

We are looking for partners and funders to take this work further.

Innovations in Dementia CIC, PO Box 616, Exeter, EX1 9JB
Telephone 01392 420076

Registered as a community interest company No. 06046815.
Find out more about community interest companies

© Innovations in dementia CIC 2008
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