"When I get older..."

The topic of "healthy ageing" is seen a very important. For example, in the UK, there is a challenge of "5 extra healthy years by 2035". It's not clear how that will be measured, or indeed whether it means 5 extra years of life (that will be healthy ones) or targeting improved health within the current lifespan.

At UCL, we had a panel discussion on this theme at the 2019 annual symposium, and the House of Lords Science & Technology Committee is currently conducting an Inquiry into Ageing: Science, Technology and Healthy Living. I had the interesting experience of appearing before this committee last week. The discussion was wide-ranging, but inevitably didn't cover all the themes that are important: it's a huge topic!

Here are a few themes we didn't talk about that I think are important in this discourse:

• Expectations of ageing. There isn't a single experience of ageing. Yes, there can be challenges, such as cognitive impairments (e.g., dementia) and managing multiple morbidities, but this isn't a universal experience. For example, Angela Soper and Ivor McCourt are both climbing at a high standard in their 70s, and many people have great fun as they age, whether it involves demanding physical activity or not.
• Wisdom has a value that complements the qualities of younger generations, and most people have valuable things to contribute to society, provided that structures are in place to empower people to contribute in whatever ways they can.
• There isn't a single date on which we become "old", and good design should be accessible to most people regardless of their age. Indeed, people are likely to find a technology useful in older age if (a) it doesn't carry a stigmatising label of being "for older people", and (b) it is something that they have found useful for some time (and are familiar with).
• Theories such as Self Determination Theory highlight the importance of experiences such as autonomy, competence and relatedness in contributing to quality of life. Autonomy and competence can be promoted or diminished through technology design and the infrastructure that surrounds it. For example, local government services that can only be accessed digitally without providing support for people with limited digital skills are disempowering. Conversely, technology that is easy to use and that gives people access to services they might not be able to access otherwise is empowering.
• Loneliness is one of the most important factors in poor quality of life and cognitive decline in older age. This is predicted to be a growing problem in the UK, and loneliness is associated with mild cognitive impairment (MCI) and dementia. Poorly designed technology and infrastructure contribute to loneliness, but there are some great opportunities to design technologies that bring people together and increase people's sense of connectedness.

Designing for people of all generations is just that: designing for people, recognising that everyone has their abilities and their needs. There's a quotation that goes something like: "Growing old isn’t so bad when you consider the alternative." For some people (e.g., in pain or managing dementia), this might not be true, but hopefully appropriate technologies can help to make later stages of life a positive experience for many people. So can cliffs and swings and other "low tech" stuff!

Image by Claudia Peters from Pixabay

Don't forget!

Our mother has advanced Alzheimer's disease. Our father had vascular dementia. For a long time, we found it difficult to locate resources that helped to understand the diseases, our parents' experiences, or what we (as their children) could do to support them. We found quite a lot of material that was patronising, overly general, or overly technical.

The following are some of the resources that I have found most helpful to date (in no particular order):

• Wendy Mitchell's personal narrative of her experience of early onset Alzheimer's gives an amazing insight into the challenges and strategies that one person established to overcome them.
• There are many variants of dementia, with different causes and patterns of progress. These are well summarised by Dementia Australia.
• Alzheimer's disease is the most common form of dementia. This article in Nature Education gives some insight into the specifics of AD.
• Five "pocket" (i.e., brief!)  films about aspects of Alzheimer's capture the science in neat little chunks.
• The Dementia UK site gives more insight into managing and living with AD. Follow links from there to find out about other kinds of dementia.
• A personal narrative by a child of someone living with dementia emphasises the value of good care homes and their specialist care.
• As someone loses abilities, it's useful to find products that are specifically designed to support (and bring pleasure to) people with dementia, such as Unforgettable.
• In the UK legal aspects of supporting someone with dementia include setting up legal power of attorney while they still have mental capacity to do so, and possibly applying for attendance allowance to help towards the cost of care when it becomes necessary.

Maybe one day I'll link these notes to theory of information seeking, but for now it's just a place to gather some links.

Palliative care technology (professional interest meets intensely personal experience)

About 10 years ago, when I first started working on infusion devices, I met a medical director who did a lot of work in hospices; he noted that the motors in the syringe drivers in use at that time hummed gently while delivering medication, and that many families hated the constant reminder that this meant that their loved one was on end-of-life care.

Recently, I have experienced this at first-hand, except that the syringe driver being used was mercifully quiet, and did nothing to remind us of its presence. It only really featured when Dad (now very peacefully sleeping) had to be turned to a different position, when the care professionals had to take care not to occlude or dislodge the line. And yet this simple device had huge emotional import: it still, silently, announced that the end of a life was near. It was exactly the ending that we had agreed we would want if possible: peaceful, not disrupted by any invasive or disruptive interventions, with family around. And yet I still found myself wanting to remove the driver because it signified a conscious decision, or determination, that Dad was indeed going to die. Maybe if I removed the driver then Dad would spring back into life. So I find myself with very mixed emotions about the driver: gratitude that it did indeed contribute to a peaceful, pain-free ending combined with distress that it announced and determined the inevitability of that ending.

As a technology professional, I of course also found the device interesting: the nurse who set it up did so with great care, and clearly found it easy to use: it is a task she performs routinely. But the three aspects that we highlight in our paper on "Bags, Batteries and Boxes" all came up in the conversation around the driver. The disposable bag provided was identical to the one featured on the left in Figure 1 of our paper (though all it did was notionally hide the driver which was, in any case, hidden under the sheet). The nurse replaced the battery at the start and after 24 hours to minimise the risk of it running out of charge. The box was locked to prevent tampering (correct) but, bizarrely, when it came to removing the driver after Dad's death, I was the only person in the room who knew where the key was located, which rather undermined its role as protection against tampering. Since no nurse visited after Dad's death and I didn't want him to be moved while still attached to said driver, I asked the doctor to remove the butterfly needle. Clearly, the doctor had never done such a thing before, reinforcing findings from our study of incident reports involving syringe drivers used in private homes that doctors are sometimes put in the position of having to use technology they have no familiarity with. Thankfully, the doctor did kindly remove the line, gently as if removing from a living patient, and we could send Dad off suitably clothed and unencumbered by redundant technology. I can only assume that the driver was returned to the community nurse team later.

I'll close by thanking the amazing staff at Tegfield House, who cared so diligently for both Dad and us and the equally amazing NHS nurses and doctors who cared for Dad over many years, and particularly in his final hours.

If the user can’t use it, it doesn’t work: focusing on buying and selling

"If the user can’t use it, it doesn’t work": This phrase, from Susan Dray, was originally addressed at system developers. It presupposes good understanding of who the intended users are and what their capabilities are. But the same applies in sales and procurement.

In hospital (and similar) contexts, this means that procurement processes need to take account of who the intended users of any new technology are. E.g., who are the intended users of new, wireless integrated glucometers or of new infusion pumps that need to have drug libraries installed, maintained... and also be used during routine clinical care? What training will they need? How will the new devices fit into (or disrupt) their workflow? Etc. If any of the intended users can’t use it then the technology doesn’t work.

I have just encountered an analogous situation with some friends. These friends are managing multiple clinical conditions (including Alzheimer’s, depression, the after-effects of a mini-stroke, and type II diabetes) but are nevertheless living life to the full and coping admirably. But recently they were sold a sophisticated “Agility 3” alarm system, comprising a box on the wall with multiple buttons and alerts, a wearable “personal attack alarm”, and two handheld controllers (as well as PIR sensors, a smoke alarm and more). They were persuaded that this would address all their personal safety and home security needs. I don’t know whether the salesperson referred directly or obliquely to any potential physical vulnerability. But actually their main vulnerability was that they no longer have the mental capacity to assess the claims of the salesperson, let alone the capacity to use any technology that is more sophisticated than an on/off switch. If the user can’t use it, it doesn’t work. By this definition, this alarm system doesn’t work. Caveat emptor, but selling a product that is meant to protect people when the net effect is to further expose their vulnerability is crass miss-selling. How ironic!

What's in it for me? The challenges of designing interventions for others

"Uninvited guests" is an entertaining short video showing possible, compelling, responses to well-meaning digital interventions for wellbeing that an elderly relative is encouraged to use.

Recently, a friend (I'll call her Hanna) told me about her experience of something similar, and it highlighted to me just how challenging it is to design well to help others to live well, and how important it is to make new designs of direct value, and easy to understand.

Hanna's parents are elderly, and had been plagued by nuisance calls: some just irritating, but others that involved mis-selling, "fixing" a computer virus, or otherwise leaving her parents feeling unsettled and cheated. She wanted to work with them to help avoid these calls. They installed Truecall on the line. And for a couple of weeks, it seemed to be working really well: letting through trusted callers while blocking unknown callers. A couple of unrecognised callers contacted her to request access and she extended the list of trusted callers in response. All good!

Then things started to unravel. An elderly acquaintance who wasn't on the list tried calling, did not understand the 'blocking message' immediately, and promptly drove round to her parents' house to ask what was going on. They found this really embarrassing, and it undermined their trust in the system. Hanna worked with her parents to add every known acquaintance to the list of trusted callers. But their fear of missing even one 'real' call had been triggered. At least: that was the surface presentation; I suspect there was more going on.

Apparently, when adding names to the list of trusted callers, Hanna's parents talked about the data entry as if they would then be able to use the list as a phone book. That would have been useful to them. But of course it didn't have that functionality (it's a call blocker, not a call enabler). They had a poor mental model of how Truecall worked and what it did. I'm guessing that this lack of understanding made them feel alienated and disempowered.

Hanna showed her parents their own call log, highlighting all the nuisance calls that had been blocked, and that therefore had not been disruptive. But this was apparently not persuasive at all: they could not remember the occasions where they had been persuaded by mis-selling, and now the concern about missing genuine calls dominated completely. Indeed, Hanna's parents seemed to grow in confidence regarding their ability to manage nuisance calls with every day that passed, and Truecall seemed to become a device that questioned their competence.

They told her about one of their friends also using Truecall. But she tells me she couldn't work out whether this was a positive comment (this is catching on; we're ahead of the curve) or a negative comment (that friend is getting old and having difficulty screening nuisance calls).

At one level, Truecall is a technology that does one job and seems to do it very well. At another level, it is a social device. The fact that them using Truecall was visible to a few of their friends and acquaintances seems to have made it unacceptable, even "embarrassing". I'm guessing it is preferable to them to be autonomous, to feel in control, and not to be seen to be using a call blocker, than to avoid nuisance calls. 
 

We all use technologies that we don’t fully understand. But we need to understand them well enough to feel in control, and it seems as if Truecall went beyond that for these elderly people and their equally elderly friends.

Truecall has had rave reviews, and it really does seem to do its job very well. So it was a surprise to me when Hanna told me about her and her parents' experiences. Maybe, even though I'm pretty sure that Hanna's parents are in the target market segment for Truecall, for something to work for Hanna's parents it would have to be even easier to use, even more transparent. I'm guessing it would have needed the following features:

• everything accessible without obviously accessing the internet (so, visible on a dedicated display with the phone).
• offering the 'phone book' capability so that they could more easily make calls.
• having three call categories that are simultaneously enabled: trusted (come straight through); zapped (blocked, including all withheld numbers); and unknown (with a really easy way to move unknown numbers into trusted or zapped, whether before or after accepting the call).

I'm not sure that this is technically possible at the moment – or if it is, it might be prohibitively expensive to implement. But hopefully it will be possible in the near future. For me, the most important insight is that there are some very subtle emotional and social values that tip a technology from being something to engage with to being something that is rejected. In the uninvited guests video, the star of the show is technology savvy enough to subvert the best of intentions of his family and of the technology design; in Hanna's case, it seems that the only option for her parents was to reject the technology completely. We still have a lot to learn about how to design technology that is truly empowering.

The lifecourse and digital health

I've just been away for the weekend with a group of people of varying ages. Over breakfast, I was chatting with Diane (names have been changed), who surmised that she was the oldest person there. I looked quizzical: surely she's in her 70s and Edna is in her late 80s? But no: apparently, Diane is 88, and thinks that Edna is only 86. Appearances can be deceptive. Diane has a few health niggles (eyesight not as good as it once was, hip occasionally twinges) but she remains fit and active, physically and mentally. I hope I will age as well.

Meanwhile, last week I was at an Alan Turing Institute workshop on "Opportunities and Challenges for Data Intensive Healthcare". The starting point was that data sciences have always played a key role in healthcare provision and deployment of preventative interventions, and that we need novel mathematical and computational techniques to exploit the vast quantities of health and lifestyle data that are now being generated. Better computation is needed to deliver better health management and healthcare at lower cost. And of course people also need to be much more engaged in their own care for care provision to be sustainable.

There was widespread agreement at the meeting that healthcare delivery is in crisis, with rising costs and rising demands, and that there is a need for radical restructuring and rethinking. For me, one of the more telling points made (by a clinician) is that significant resources are expended to little good effect in the interests of keeping people alive, when perhaps they should be left to die peacefully. The phrase used was "torturing people to death". I don't imagine many of us want to die in intensive care or in an operating theatre. Health professionals could use better data analytics to make more informed decisions about when "caring" means intervening and when it means stepping back and letting nature take its course.

In principle, better data, better data analysis, and better personalised health information should help us all to be better manage our own health and wellbeing – not taking over our lives, but enabling us to live our lives to the full. My father-in-law's favorite phrase was "I'd like a bucket full of health please". But there's no suggestion that any of us will (or wants to) live forever. At the meeting, someone suggested that we should be aiming for the "Duracell bunny" approach to life: live well, live long, die quickly. Of course, that won't be possible for everyone (and different people have different conceptions of what it means to "live well").

This presents a real challenge for digital health and for society: to re-think how each and every one of us lives the best life we can, supported by appropriate technology. There's a widespread view that "data saves lives"; let's also try to ensure that the saved lives are worth living!

Know your user: it's hard to imagine being older

I've just been reading Penelope Lively's enchanting article "So this is old age". It's an engaging read – at least for someone who sometimes thinks that they are experiencing old age! I love some of her description: for example, "the puzzling thing in old age is to find yourself as the culmination of all [your younger selves], knowing that they are you, but that you are also now this someone else". She is very articulate, and presents something like a persona for an older person. She also reminds us that it's easier for the older person to imagine what it's like to be younger than the reverse.

And yet, the older person who she portrays is importantly different from any individual (over the age of, let's say, 75) that I personally know. It is much easier to assume that we all age similarly – that people get more similar as they get older – than to get your head around all the individual differences. But as far as I can tell the converse is actually the case: variability increases as different kinds of degeneration compete against different enhanced competencies (kinds of wisdom, perceptions, appreciations).

We all have a tendency to stereotype "the other", whether they are older or younger, male or female, a nurse, teacher, cleaner or astronaut. It's much easier to design for people "like me" than to put yourself in someone else's shoes and design for them. Personas have an important role in helping to design for others, but they need to be used with sensitivity to real people. That's surely the best design: designing for people who are different from oneself in ways that empower and delight them.

When I get older: the uncountable positives

Last week, I was at a presentation by John Clarkson. It was a great talk: interesting, informative, thought provoking… Part-way through it, to make a point about the need for accessible technology, he presented a set of graphs showing how human capabilities decline with age. Basically, vision, hearing, strength, dexterity, etc. peak, on average, in the 20s, and it’s downhill all the way from there. It is possible that only two measurable values increase with age: age itself and grumpiness!

So this raises the obvious question: if we peak on every important variable when we’re in our 20s, why on earth aren’t most senior roles (Chief Executive, President, etc.) held by people in their 20s? Is this because grumpiness is in fact the most important quality, or is it because older people have other qualities that make them better suited to these roles? Most people would agree that it’s the latter.

The requisite qualities are often lumped under the term “wisdom”. I’m not an expert on wisdom, but I imagine there’s a literature defining and decomposing this concept to better understand it. One thing’s for sure though: it can’t be quantified in the way that visual or auditory acuity, strength, etc. can. The things that matter most for senior roles are not easily quantified.

We run a risk, in all walks of life, of thinking that if it can’t be measured then it has no value. In research we see it repeatedly in the view that the “gold standard” for research is controlled (quantifiable) experiments, and that qualitative research is “just stories”. In healthcare, this thinking manifests itself in many ways: in measures of clinical effectiveness and other outcome measures. In HCI, it manifests itself in the weight put on efficiency: of course, efficiency has its place (and we probably all have many examples of inefficient, frustrating interfaces), but there are many cases where the less easily measured outcomes (the quality of a search, the engagement of a game) are much more important.

As vision, hearing, memory, etc. decline, I'm celebrating wisdom and valuing the unmeasurable. Even if it can sound like "just stories'.