design · 2018 to 2019
Dementia affects memory and the sense of direction. People in the early stages often stop going out alone, and they lose exercise, confidence and social contact with it. Most navigation tools are built on GPS maps, which can overwhelm someone with cognitive difficulties.
This master’s thesis asked whether a wayfinding tool could start from what a person already knows: the landmarks, routes and places in their own mental map of the neighbourhood.
We mapped the field first: kinds of cognitive difficulty, independent living, wayfinding behaviour and interaction design. We started with two groups, people with traumatic brain injury and people with dementia, and narrowed to mild to moderate dementia. Of four contexts for wayfinding, we chose walking in one’s own neighbourhood, because people with dementia eventually give up driving.
In a familiar place, we find our way from memory: we recognise landmarks and decide at each junction. In an unfamiliar place, we lean on maps, apps and other people. Dementia makes both harder, with memory loss, anxiety, sensory changes and a weaker sense of orientation.
To understand mental maps, we started with a personal one: everyday places in Buffalo, pinned on a printed map and linked to home with thread. The colour of each thread showed how often each place was visited.
Eleven students who lived near the University at Buffalo and walked everywhere drew a map of their neighbourhood, with no boundary set. They then drew routes from home to two supermarkets. Afterwards, we asked why they remembered each landmark.
We read the maps through Kevin Lynch’s paths, nodes, landmarks, districts and edges. Without a boundary, people anchored the map on the main street and branched out from it. Landmarks carried meaning: a church appeared on the map of someone who went every weekend, and places people visited often were drawn larger.
Having visited a place was the most common reason for remembering it. Others were a friend’s recommendation, size, lights or a garden, a mirrored facade, or a shop that had just opened.
Arnsberg, a small town in Germany, has a strong dementia-friendly community. With an interpreter, we spent a week and then 25 days there. We interviewed people living with dementia, their families and carers, nurses, a doctor and care services. I joined the morning routine at a senior home and a day at a day care centre, and walked with a woman with mild dementia on her usual route to a flower shop.
Before that, we spoke with an independent living centre in Buffalo and with a man living with a brain injury.
We joined the daily routines: exercise in a circle of chairs, the morning newspaper read aloud with word and number games, and waffles in the afternoon. Answering correctly in the games gave people visible confidence. People also showed us what they carried and used every day, from watches and simple phones to alarm buttons and kitchen aids.
Arnsberg was full of design for dementia. On one hospital ward, each door had its own coloured frame so people could find their room, and red marked what needed attention in the washroom. In homes we saw the devices people were given, or had made for themselves: alarm buttons, phones with large keys, and the changes one husband made to his house while caring for his wife. Several people had an alarm button and chose not to use it.
At the centres, staff never talk about dementia with their guests. Many people in the early stages do not see themselves as needing help, and an emergency button looks like a medical device. Self-image mattered; so did a sense of control. Carers asked different questions: what happens after a wrong turn, and when should someone be told?
“I will use it when I need it.”
“Something like this would be wonderful for my husband. He does not have dementia but he loses his way quite often.”
We listed the choices the tool would have to make. Collaboration with a carer, or freedom to walk alone? A survey map of the whole route, or directions from where the person stands? How much information, and in what form?
The first draft was one phone app with two roles: the carer builds the person’s map, and the person uses it. In a feedback session, switching roles in one app proved confusing. We split the concept in two: a phone app for the carer, who builds a profile and a map of the places the person visits, and a simple handheld device with an armband for the person.
Two personas from the fieldwork carried the concept. Emma is 78, recently diagnosed, and lives alone in the neighbourhood where she has lived for 30 years. Her son Ben lives in the same town. Ben makes a map for Emma; with her permission, he is told when she goes out and when she is back. On the walk, Emma gets directions through her own landmarks: “you crossed St. Andrew’s, take a left from the oak tree”.
We cut the input to two actions: choose where to go, and call for help. We cut the output to one: the next direction, shown from where the person stands, with a picture of the next landmark. The device asks at the usual time (“walk in the park?”) and gives one instruction at each stage, from leaving to arriving.
The concept became two devices: an armband with an emergency button, and a small handheld with a screen for choosing a place and following directions. We tried three forms for the handheld. The first had the call button on the side; the second moved it to the front; the third added a separate home button. We 3D-printed all three as non-functional prototypes.
A domain expert from Arnsberg’s office for aging reviewed the concept. He asked us to keep the information close to what people already know, to consider printed maps as a tangible output, and to test with a working prototype, since a mock-up would mean little to people living with dementia.
The prototypes answer the functional questions only in part. The harder questions are about the object and its place in daily life, and we would start there next: