Help button

Many of the supportive devices in dementia care feature one big, often red “Help” button. Help can initiate a telephone connection to a call center or a family member, send GPS data to enable help or send out a noise signal. It is a tool with a very strong rationale behind it: If someone, who may have problems communicating, gets distressed on their own, they might not be able to follow complicated instruction, but a one-button-push should bring help quickly.

But I am wondering whether this rationale does take the emotional side of “asking for help” into account. Do people feel comfortable to do so? Do they remember that this anonymous button connects to a friendly voice on the other end? Might they be in a public place where a loud voice talking to them might be considered embarrassing?

Philipson et.al. (2015, 972) studied how people felt towards getting help when they experienced what could be considered early signs of dementia. The attitudes in this study show that people might delay seeking for help:

“The majority of respondents indicated they would seek help if they thought they had the early signs and symptoms of dementia and were most likely to do so from a GP (82.2%) or a partner (49.4%). Whilst very few people indicated that they would not seek help from anyone if they thought they had the early signs of dementia (7.2%), more than one-fifth of the sample (21.3%) indicated that they would delay seeking help for as long as possible.”

It would be interesting to see whether this trend relates to other aspects after the diagnosis as well.

To learn more about this I looked again into the literature on dementia and tchnology to find examples of how people interacted with these kind of buttons.

The idea to use the one-button-solution is commonly shared. Donnelly et.al. (2008) used it as a cover on a mobile phone to make access easier and Orpwood et.al. (2007) used it when making a CD player easier to use for people living with dementia. All these examples are slightly more neutral than a help-button, but underline how strong the idea of having a single button is a good solution in developments for people living with dementia. Robinson et.al. (2009, 499) added a one-push help button to their navigating device: “If someone with dementia becomes concerned or feels they are lost, they can trigger the device to send amessage by pressing their panic button.”

Use of technology by people living with dementia is not as researched as its development. Nonetheless in the examples I found, the single-button, help-button is discussed, but not as positively. Gibson et.al. (2015, 7) found in interviews that people were hesitant to wear the panic-buttons provided as they got scared or embarrased when pushing the button by accident:

“Telecare or pendant alarms were designed to be passive, only alerting a person to
their presence in the event of an emergency. However in practice their activation occurred much more frequently, with potentially distressing consequences.”

Testing a simplified mobile phone surface, Brankaert, Snaphaan and den Ouden (2014, 293f) introduced a help-function, which was “liked” but not used:

“On the contrary, the other new feature, a help button was received less positive. Participants often pressed it by accident, causing moments of distress. Nevertheless, some caregivers felt more secure knowing that for example their spouse had access to such a feature.”

Lindsay et.al. (2012, 522) critizise that “commercially available assistive technologies for people with dementia generally have a safety focus.” (Lindsay et.al., 2012, 522)

Robinson et.al. (2009, 499f) reported that one of their participants “was worried that the panic button on the device might be too easy to press although, following explanation of the safeguards, she became less concerned.”

Even though the number of examples of use of those buttons is limited I feel it is enough to question the concept. It will be both interesting to see in which other areas this kind of single-button solution is used and how people integrate it – both into their products and into their lives-, and how people would feel about a help-button in general. What should it look like? What should it do? Would they use it?

 

 

 

 

Four concepts around monitoring

Learning how many products are developed monitoring people living with dementia, involving Smart Homes, GPS-trackers and video or audio surveillance, is interesting in itself, but I am further interested in issues surrounding these products. The amount of ethical guidelines and discussions around this topic show that people feel a need to have these products, but feel uneasy about their use. In this post I want to outline four areas that interest me and that I could imagine analysing deeper during my PhD project.

Notes_Monitoring_themes

Monitoring as Interaction: Being an Interaction Designer, currently at the Interaction Center, this one is obvious to me – but not so much to many people developing these products it seems. In many of these products interaction with the wearer e.g. the person living with dementia is kept to a minimum or non-existent. Many of the devices are designed to be invisible in the sense that their function is neither obvious nor can it be deduced. This is done for two reasons: Reducing stigmatisation and making sure that the device can be used in an emergence without user input. Even though these are valid reasons, I argue that they add to the feeling of unease, as it makes it easy to coerce people into wearing these devices and as it takes away autonomy from the people using the devices.
Keeping interaction to a minimum also may reduce painful decisions about whether the illness has progressed so much that the device cannot be used anymore, which I unserstand as a main point towards non-Interaction. But the counter-argument is that pre-empting these times, the wearer of the device is incapicated before this would be necessary, which could cause damage as well.

Interesting questions to follow-up for me are: Can the devices be obvious, but interesting/aesthetic? How would people feel about wearing devices that arouse curiousity and form the basis for discussion? How about a playful/exploratory discourse on navigation, keeping safe and risk?
Can a mode of interaction in which the wearer of the device is in control be the norm which can be overwritten in case someone feels the need to check? How can that be made clear?
How would people feel about a two-way conversation via the device? E.g. tracking someone is only possible when one reveals their own position.
Can the level of interaction vary? Are there methods of communication for good and for bad days and how could the device distinguish between the two?

Monitoring and risk: I argue that carers are the main users of the these devices as they exist at the moment. Caregiving leads to a high (perceived) responsibility and these devices are considered to control risk. This corresponds with a general shift from controlling danger to managing risk in current gouvernmental surveillance technologies. Even though I fully subscribe to the aim to keep people safe, I feel that the approach of avoiding risk does have its limitations as it brings invasions into privacy and autonomy. It brings with it a very questionable language, e.g. talk of management.

Follow-up questions are:
Could more interactive devices intervene to avoid risk, e.g. by giving people support or asking for help more directly?
How can people communicate which risks they are willing to take? Living will etc.

Monitoring and Mobility: The overall aim to enhance mobility and an independent, active life by people living with dementia is undoubtedly positive. But I argue that the products available at the moment do not do enough to support this as they are only aimed to give support in times of a crisis. Even though they enable quicker help in emergency situations, they do not do much to avoid them, or support people to avoid these types of situations.

Follow-up questions are: Can these devices be more interactive and offer help and support to the wearer of the device? How would this affect emergency situations?
How can we design for a more mobile lifestyle, not confined to a home, with more variables to consider?
As an exploratory/conceptual design, could we make getting lost/exploring fun? E.g. helpful maps that show calm routes or giving tipps for exploring?

Monitoring and Hacking: Avoiding detection and exploring questions around privacy are main topics of hackers. But the connection goes even deeper. As originally proposed, I think that there is a lot to learn from the ‘hacks’ people develop themselves. Located between design and use, hacking questions the assumption that people are the passive users of technology. Learning from what people living with dementia do themselves is more than research into innovation to me; it also has a political side regarding¬† self-gouvernance and autonomous living.

Follow-up questions:
How can we bring hackers and people living with dementia together? E.g. Geeks-in-residence
What methods are suitable to learn how people develop tools and strategies for their illness?

Susann Wagenknecht on hacking and the social sciences

When visiting 32C3, the 32rd Chaos Communication Congress in Hamburg, Germany, one talk stood out to me in relevance to my PhD. Susann Wagenknecht spoke about the different frames in which social scientists review hacking. I have covered aspects of her talks in my research, such as hacking as a leisure pursuit and hacking as innovation.

And, like her, I am interested in the tension that hacking creates between design and use. Hacking opens up the distinction between “priviledged designers”, who “change the world”¬† and “users, who use stuff”.¬† This is particularly relevant in my opinion in the question of helath care, and dementia, where the user is very often automatically perceived as the receiver of design, as a passive consumer. So, can people living with dementia be hackers? And how does this play out into the common frames of designers and users? Two key questions of my PhD project.

Her talk is a very interesting one for HCI researcher, not only in the area of hacking, as it opens up questions on use, design and the question whether the political impact of technology is under-researched in HCI.

https://media.ccc.de/v/32c3-7114-craft_leisure_and_end-user_innovation/oembed