Viewpoint: Technology and consent

Williamson, T. (2025) ‘Viewpoint: Technology and consent’. Journal of Dementia Care, 33(6) p.16

JDC editor Toby Williamson reflects on the issue of consent to the use of surveillance technology, and to portrayal of people in films and photography 

Surveillance technology 

Consent is an issue that frequently comes up in discussions about the use of technology in dementia care. So many tech products are designed to observe, record, monitor, track, map, and send alerts and information about the movement and behaviour of individuals with dementia. I’m going to call all of this “surveillance”, and use the term neutrally, although I’m conscious that it can be seen as a rather negative term. I suspect most people don’t want to be watched constantly – this is an issue about the right to privacy. The surveillance is usually justified on the grounds of ensuring the safety of the person with dementia. If the person lacks capacity to consent to this, those involved in their care can make a best interests decision under the Mental Capacity Act (MCA) to use surveillance technology deemed necessary. 

However, in my view, consent and best interests can sometimes get a bit blurry. Some care homes use movement detectors to monitor people in their rooms to avoid intrusive visits by care staff, usually at night, but not always. Once a pattern of movement has been established, then in-person visits by staff only need to take place if there are unusual variations from the pattern. This also frees up care staff to attend to other residents. I would hope however, that where a resident indicated they liked having in-person visits, then these would continue – it wouldn’t be in the person’s best interests to only monitor them remotely. It also probably wouldn’t be in the person’s best interests if remote monitoring was used to save money by reducing the numbers of staff on duty. And it would most certainly not be a good best interests decision if a system like this was used primarily to free staff time up to care for some residents while ignoring others. 

Families use surveillance technology to monitor a relative with dementia, when they do not live with them or have to spend time away from them. Again, one would hope that this is always done in the person’s best interests if they lack capacity to consent to these arrangements (Vic Lyons will give a good example of this in the next issue). Where people like to forward plan, they may even have indicated in advance, when they had capacity, that they would be happy with tech surveillance. However, there is the risk that surveillance technology is installed, at least in part, because it’s more in the “best interests” of the family (under the MCA, there is no such thing as best interests for anyone in a caring role). The tech may reduce worry and stress among family carers, but this may only indirectly benefit the person with dementia. More concerningly, the tech may reduce how frequently family members feel they need to do face-to-face visits with their relative, even though the person with dementia would like them to visit this way and indicates the tech is no substitute for this.   

Consent for films and photography 

Perhaps the most difficult area around consent involving technology concerns film-making and photography involving people with dementia, where the films or photographs are shown publicly at screenings, exhibitions, conferences and on websites. If people can give their consent then there’s not too much concern, especially if they have some say over how they appear in the film or photos. Nevertheless, there is still the possibility that the film or photograph may subsequently be viewed by someone who perceives the person portrayed in a negative way, such as an object of ridicule, fear, infantilisation, or excessive pity.  
The individual in the film or photos may not personally experience or know about these reactions. But it doesn’t help that inadvertently, their participation in the film or photograph may have added to stigmatising and prejudicial view about dementia. Fortunately, many film makers and photographers who work with people with dementia (eg Stephen Clarke—see D-Notes in this issue) are very mindful of these issues and work hard to ensure that what they create minimises the likelihood of this happening.  

The biggest dilemma is when a person cannot consent to be in a film or photograph, but someone consents on their behalf, perhaps because the film aims to raise awareness about dementia, be educational, or because it’s believed that it’s what the person with dementia would want. It’s very difficult to see how that could ever directly be in the person’s best interests. Furthermore, if their appearance in the film or photograph invoked laughter or even disgust in viewers, surely this would be the opposite of best interests, even if the person was unaware of the reaction. It’s not just a question of personal dignity, it’s about non-consensual, public sharing of personal information with very negative results. Maybe if the person had given advance permission when they had capacity, with the awareness that there might be negative reactions, it might be acceptable, but it is hard to imagine someone doing this. 

Tread very cautiously 

So whether you are a relative of someone with dementia, a care home manager, a film-maker, photographer, or supplier of surveillance technology, think very carefully about consent, best interests, and the purpose of the tech or project you are doing that involves people with dementia. First and foremost, how will the person with benefit from the tech or the project? How can it be explained to them in a way they can understand and give their consent? If they can’t give their consent, how far does the tech or the project align with the person’s wishes and feelings, beliefs and values? If it doesn’t align, what alternatives are there? Put yourself in their shoes: constant surveillance and public portrayals are big deals in anyone’s life, so tread very cautiously if you plan to do these.