What types of AT are used by people with dementia and their family carers?
We identified three main categories of AT use in everyday settings:
‘Formal’ AT: devices accessed via health and social care services following a ‘professional’ needs assessment
Off the shelf’ AT: devices purchased by families directly from the private sector and
‘Do it yourself’ AT: everyday devices or systems developed, utilised or adapted by families themselves.
‘Formal’ AT comprised devices designed by AT manufacturers to facilitate assisted living activities, and which were predominantly supplied by social care services. Example products included community alarms, telecare and GPS location monitoring equipment. While this category of AT has received greatest policy attention, only 5 people with dementia accessed AT via this route. Formal AT were usually provided by local authority community alarm/telecare services, often after complex referral or assessment processes.
I can remember when this assessor woman came out. And she was very nice, but it was all very much like there are sheets and sheets of tick boxes (…). It was like “Well, if you score on this one, you know, you’ll get this, if you score on that one you’ll get that, and how much money have you got,” (…) Very impersonal I thought and not very nice for my mum either. (Carer; C114)
The second category was ‘off the shelf’ AT, dementia-friendly versions of existing devices; examples in this group included dementia-friendly signage, clocks, telephones, remote controls or GPS location monitors. An important feature of ‘off the shelf’ AT devices was that they were purchased directly from AT manufacturers, dementia/disability charities or from voluntary organisations, usually following a carers’ own research or after receiving recommendations from family, friends or other people living with dementia;
That’s (the day clock) new, that’s recently just – it hasn’t been out long, it said it on the website. The write-ups on it were really good, and the feedback, you know, people’s feedback was brilliant on it (Carer; C104).
Finally, the most common devices used by participants were ‘do it yourself’ AT, in which everyday household technologies were used to fulfil AT functions. Groups of AT in this category included: commercially available devices such as telephones, remote controls or kitchen appliances; simple devices such as whiteboards or post-it notes and the creation of individual ‘AT solutions’ using readily available information and communication technologies. Specific examples included two cases of buying a commercial GPS monitoring device, and two cases in which carers connected Closed Circuit Television (CCTV) cameras to a PC, tablet computer or smartphone via a home Wi-Fi network. Do it yourself AT could be simple or complex, were usually used in the absence of any formal AT equivalents, and were purchased from commercial retail sources such as online retailers, catalogues or high street stores.
Interviewer: Have you ever seen anything like that (simple mobile phone), do you think you would know where to go to buy something like that if you were looking for one?
Person with dementia (P112): Where to buy? X (a UK electrical goods store) I think. Our phone was at Y (a UK store selling a range of household, leisure and electrical products), and I specifically went to them because they, they were on- making a special offer, you know, and it sounded great.
A second feature of ‘do it yourself’ AT was modifying and adapting existing household products to make them easier for people with dementia to use, or using existing technologies in novel ways. In the example below, the family carer used a novelty motion sensor shaped like a cockerel to alert him if his wife approached the front door.
I‘ve put an alarm on the door since I took her key off her, I lock up at night anyway, but what I do, I’ve got a cockerel, plastic cockerel, I used to stand on the thing and as you walk past it used to crow (Laughter). If I was upstairs I knew she was heading for the front door. (Carer; C107).
Such devices were used in place of formal AT, either because carers did not know about their AT equivalents or how to access them, or because carers preferred to develop their own alternatives to AT using everyday technologies.
How is AT used by people with dementia and their family carers?
Accounts of AT use predominantly focused on the benefits AT brought to carers and their caring roles. For example, telecare or GPS monitors were used by carers to monitor the movements and activities of a person with dementia in order to reduce the physical and emotional burdens of care. One carer installed a home-made AT system using CCTV cameras, a smartphone and a home Wi-Fi network. By enabling him to monitor his wife remotely, this system gave him/her a limited degree of freedom and independence:
It means I used to be able to have a bit of a life outside of (wife), you know. I still had my freedom that I could away know that she was in the house and I could view her at any time. I could stand anywhere in the world if I wanted to and watch her. (Carer; C106).
AT were only rarely used to assist people with dementia with their day to day, household or leisure tasks. Where such devices were used, they were usually ‘do it yourself’ (DIY); household labour saving devices or simplified, commercial versions of electronic household products such as landline or mobile telephones;
My mum’s got (a mobile phone) and I have difficulty with that ‘cause all her mobile phones were like tiny little buttons. So I had seen a Doro (simple phone manufacturer), I don’t know if you’ve heard of the Doro ones? (…). So I got her one of those, so she’s got one with big buttons on. You need something very, very simple. (Carer; C109).
Formal AT, such as GPS or telecare, could be introduced without the person with dementia necessarily understanding or remembering their purpose, or even knowing they had been installed. While most people with dementia knew that technologies such as GPS monitors or pendant alarms had been introduced to help them, several did not understand their purpose or had forgotten how they worked.
You give her something quite simple and it just doesn’t sink in how she’s got to use it, like I’m sure these things where things are dead simple to use, there’s not a lot involved in them, the odd switch on, switch off, no, it’s too much for her to take in. (Carer; C107).
Notwithstanding carers frequently persuaded those they cared for to use a device by saying that it was to help the carer look after them.
She said she felt, it (a pendant alarm) made her feel like a crock, you know (laughing). She says, “I don’t need this, I’m perfectly alright.” And the way that I persuaded her to wear it was, I said, “It just makes me feel better to know that you can contact somebody if you have a fall in the house, or if you’re not too well and you can’t get to the phone.” So, I said “You might not want to wear it, but wear it for me please because it, it stops me worrying about you.” Erm, so that was why she wore it, really. (Carer; C113).
However, whilst accepting such explanations, some people with dementia routinely judged formal AT as an inconvenience to be tolerated for the sake of their carers, rather than as a benefit to themselves. One person with dementia accepted a range of potentially intrusive DIY technologies including CCTV cameras set up by her husband because she felt it made his life easier.
Person with dementia (P107): Oh yes. He’s terrified. He lost me in the town once, that was the day when I went to (name of a shop) and asked them if they would look after me bag. He, aye, he was terrified.
Interviewer: So you’ve got the cameras, so that he can see that you’re in the house? So he knows that you’re safe?
Person with dementia (P107): Yeah.
Another person with dementia accepted the use of a pendant alarm because she felt it helped her husband and main carer to cope with caring for her, rather than because of its direct benefits;
Interviewer: How you feel about that, being watched via the pendant?
Person with Dementia (P108): Ah, it’s his way of coping with me. He cannot cope with the idea of me having dementia. He cannot cope.
In a few cases, people with dementia could not be persuaded to use AT or actively resisted its use. Forgetting or not knowing what a device was, several refused to use them particularly devices such as pendant alarms or fall sensors which had to be continuously worn. Reasons given included disliking wearing the device, feeling a technology was unnecessary in their case, because they felt devices would be seen as watching the person with dementia or controlling their actions, or because the person with dementia found devices to be frightening;
it’s very rare she’ll put the pendant on, you know, and it annoys me because she’s terrified in case, she’s worn it and the time she’s worn it, she’s bent over or knocked it and it’s went off and it’s frightened her. So she’s frightened to put it on, she’ll say she’s frightened to put it on in case it goes off. (Carer; C104)
In contrast, carers blamed such refusals on personal attributes such as ‘stubbornness’ or ‘laziness’;
I think certainly think something like the pendant alarm, that’s such a basic thing. But, as it turned it’s no use whatsoever to us but that was just because my mam is such a stubborn individual. (Carer; C113).
There was frequently a mismatch between what carer thought people with dementia would be able to accomplish and the person’s with dementia actual capabilities in relation to learning how to use new technologies. As a result carers could misinterpret the motives of the person with dementia as they struggled with well-meaning attempts to introduce new technologies, including AT;
I bring something down, put it on that table and she just won’t touch it. I bought all sorts to try and help her; she’s just not interested. Buy something new and she’s not interested. As I say, I used to think she was just being bloody lazy, but that’s been explained to me that’s not the case. (Carer; C107).
The routine use of AT in practice therefore afforded the greatest advantages to carers with often only indirect benefits for people with dementia themselves. Such benefits had to be weighed against the potential inconvenience AT could cause and how accepting or tolerant the person with dementia would be of their ‘distress’.
How is AT integrated into the everyday lives of people with dementia?
i) The pivotal role of the family carer
Family carers played a key role in facilitating the integration of AT into the usual routines of their relatives by undertaking much of the everyday work required to ensure their habitual use. Some carers were acutely aware that a person with dementia could potentially learn to use new objects but that they also needed a great deal of continuous assistance to do so.
You would have to leave an idiot’s guide pinned to the board, explaining to her what it was. And she would read it, then she would forget about it, and possibly over time something would stick, not very much but something might stick, but it’s not guaranteed to stick. (Carer; C123).
In practice, carers often had to support a person to use often even simple technologies, for example routinely telling them to look at a clock instead of simply giving them the time, or reassuring a person whenever telecare alarms were triggered. This ‘background’ work also had to be continual. While appearing to be simple to use, many devices required a number of tasks to be completed in order to function; for example ensuring a device was charged, or putting it in the same place each day. Carer 109 described the daily activities needed to support her mother in using the ‘Buddi’; a simple handheld device combining a pendant alarm, fall detector, GPS location monitor and activity monitor connected to a telephone monitoring service (www.buddi.co.uk);
So it became a routine of me just charging (the buddi;) up every evening and then first thing, when she comes downstairs into the sitting room, it’s always on that little placemat on the unit, I leave it in the same place. I don’t have to tell her to pick it up, even though she’s got a really bad memory now she goes straight there and puts it in her handbag. And because she understood at that particular point, it’s become a real part of her routine, even though her memory’s getting worse she still does the same thing ‘cause it’s in her routine, it’s what she does. (Carer; C109).
If this background work was thoroughly completed by a carer, AT use almost became ‘invisible’ for the person with dementia, with the ultimate aim of reframing the technology as one of the range of routine objects to be used in the home. Nevertheless this work often comprised a wide range of supportive tasks, carried out over a long period of time, to achieve habitual use and thus maximise integration. The routines supporting AT use could also quickly change as a person’s dementia progressed, meaning carers ‘work’ in relation to AT frequently had to adapt and change if AT use was to be sustained.
ii) The role of professional carers: too little too late?
In the UK, health and social care services are meant to play an important role in proving information about AT and supporting its use in practice; however, most family carers received little practical support through these formal care services. Formal AT provision was rarely proactive, instead usually occurring as a consequence of a ‘crisis’, such as a fall, or due to ‘luck’, for example chance encounters with health and social care professionals, attending local events in which AT services happened to be present, or carers happening to read about devices in local media or as part of local pilot studies;
Interviewer: Have you ever come across anything like, you know, like these before?
Person with dementia (P101): We went to a conference thing. We didn’t actually look into it but, I’m sure they had stuff like this (AT) there.
(PwD) used to always get me a ‘Daily Express’. Just by chance, that very same day was a little article about the Buddi. And I read that article and I thought, “Oh that sounds great.” Anyway, when (PwD) got her diagnosis the consultant mentioned it. And straight away I knew what he was talking about ‘cause I’d read that article. So he said, “Oh, that might be useful for your mam” (…) So she was put on the pilot scheme for it. (Carer; C109).
Where AT were provided by social care services as part of a formal care package, participants frequently expressed dissatisfaction with both the quantity and quality of support they received once technology had been delivered or installed;
Interviewer: The box (telecare base unit), and the sensors, have they been helpful at all?
Person with dementia (P108): Oh what, since they put it in? Haven’t seen them since. No. I suppose they put it in, can ring the bell if you want it. They haven’t really, I’ve had a letter from them to say they’re reviewed every year, or something. Haven’t seem ‘em since.
People with dementia and their carers felt that the AT was ‘dropped in’ to their lives with little ongoing information and advice about how to use it; carers thus devised their own ways of making technologies work in practice. Several carers used DIY AT instead of formal AT products partly because they did not know formal AT devices were available but also because they felt commercially available devices, being more familiar, could be more easily adapted to their needs and were better value for money.
I mean to be honest I actually toyed with the idea of just buying her (PwD) an android phone because you can get them very cheaply these days. Maybe it’s just better to buy something that can you know already. (Carer; C121).
Family carers who tried to seek information from health and social services about AT reported minimal advice regarding what AT was available and also about how and when AT could be used to help with care. Several also felt frustrated about formal AT being introduced at too late a stage to help, especially if the technology was introduced following a crisis.
Certainly this assistive technology was something that by that time I almost think that, you know, they introduced it too late, and I didn’t know what the hell it was anyway. (Carer; C114).
Timing was crucial. Both carers and the person with dementia needed time to familiarise themselves with AT, but both felt that unless the AT was introduced early in the disease trajectory, family carers could not provide the essential support to enable their relative to learn to use the technology effectively. However paradoxically a number of carers were also resistant to the idea of introducing AT ‘too early’, i.e. before they felt it was necessary. While early installation could support a person to learn a device, it could also be ‘institutionalising’, for example disrupting the meanings attached to a person’s home, or even forcing a person to engage with the fact that they were ‘ill’, which could be distressing. One carer questioned the appropriateness of dementia friendly signs in the home:
When your memory isn’t too bad then my gut reaction is it’s institutionalising. It’s like, I know where the toilet’s at, I know where our bedroom’s at. And if it gets so bad where I don’t know where these things are at, then then seeing “Dining room” wouldn’t make much sense to me. (Carer; C108).
When to introduce AT therefore became a key dilemma for family carers when making decisions about AT use, but an area in which they largely felt unsupported in their routine contact with formal care services.
What issues influence the use of AT among people with dementia and their carers?
Carers were generally positive about using AT. They cited benefits as providing support with caring tasks, giving them ‘peace of mind’ and offering greater independence for the person with dementia. One carer claimed that using the ‘Buddi’ system had enabled her to continue working;
Interviewer: How have you felt about using the Buddi?
Carer (C109): Tremendous. As I say, I couldn’t have continued working as long as I did, and I’m still, we’re still benefitting from it you know. It, it’s really, I think it’s a wonderful device, wonderful.
However other carers also commented that they felt AT was a ‘necessary evil’; beneficial in terms of helping with care, but less preferable to care provided by a ‘real person’. Indeed AT could be judged as superfluous, or even with hostility, if it was seen as a replacement for personal care, for example if the technology took over completely the carer’s own caring duties or replaced a task carers felt they could do better;
I mean, that (a pill dispenser)’s brilliant if you’re on your own. But you don’t need it as a couple. I mean, I put his tablets out now on a morning. He still takes his own on a night. (Carer; C112).
In contrast people with dementia were often ambivalent about using AT. As noted above, several people with dementia refused to use AT, or used it to please their carers. In addition, AT use by people with dementia was frequently subtly, or sometimes significantly, different from their original intended purpose. Specifically, many people with dementia adapted their use of AT in order to make them better fit into their lives;
I have a pendant. I don’t wear it when he’s in the house ‘cause he’s always near me, you know. But I wouldn’t be without that pendant, just in case. ‘Cause I’ve fallen at night you see, and he’s a very heavy sleeper, so we keep it, I keep it right beside me at night. (Person with dementia; P108).
Practical difficulties in using AT could present barriers to their acceptance. 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. In particular, the accidental triggering of telecare alarms, particularly when they happened more frequently than expected, could leave a person with dementia fearful of the technology;
Interviewer: Do you wear the (pendant alarm)?
Person with dementia (P104): I’ll tell you the truth, I’m terrified of it. When we first got it it was over there and I didn’t know what it was, and I happened to go over and I touched it and I thought, “What is it?” Of course the voice came up straight away, “What’s the matter?” It must go to a centre, some centre. And I said, “Oh I’m sorry, I must’ve touched something”.
One person with dementia no longer went into her kitchen after dark because the continual triggering of her telecare system’s door exit alarm, activating when near the external kitchen door, frightened her. The ‘disembodied’ voices speaking through telecare intercoms due to emergency callouts, accidental alerts or routine maintenance also caused distress;
Even the one I’ve got now, you can, cameras you can talk to them. You can imagine a voice coming from there, so that’s not of any benefit really. You’re not reassuring her at all, you’re scaring the daylights out of her. (Carer; C106).
Yet in several cases carers, nonetheless remained happy for telecare alarms to remain in place despite their distress, largely because it reassured them as to the safety of the person they cared for;
Interviewer: how do you feel about (mother/P104) being frightened of touching the door?
Carer (C104): It doesn’t worry us, because I know if she doesn’t touch the door she’s not going to attempt to go out.
Such issues raise questions about whether the perceived benefits of some AT for carers and for formal services outweigh either the inconvenience or emotional distress experienced by the person with dementia, and ultimately who AT is being installed and used for.
Cost as a barrier to AT acceptance
Both the direct and indirect costs of AT were repeatedly highlighted as a potential barrier to their use. Several carers noted that AT was generally expensive.
You know, some people can’t afford it. I don’t mind paying for it ‘cause it’s helping her (mother) but I think it, it is expensive. It is quite steep, but then again, if her attendance money is there for it and she needs it, you, you don’t mind getting it if it’s going to help her, you know. (Carer; C104).
Charging models to rent AT varied across geographical localities. Formal AT was rented via local authority community alarm or telecare services, although some people receiving certain state benefits could secure them without charge. While AT were considered expensive, a few carers and people with dementia said they were willing to pay if they could see the advantages of using them or if they were deemed to be worth the cost relative to other products;
But I, I have, well I, I’ve always had the same thing, always buy the best you can afford So, for example, if you can get something for £20, but if you can afford £100, get something and then it’s going to last for years, you know, and it’s not going to break in six months. (Person with Dementia; P101)
While many considered local authority service charges acceptable, some felt rental charges of around £20 per month were too expensive, particularly for people living on limited incomes or paying for other social care services.
Because I, we can’t keep the heating, can’t keep, we can only just about keep this heating on. We just can’t afford to survive on our money. (…) If I had to pay for it (a telecare system) it would have to go. (Person with dementia; P108).
In addition, despite being sold as AT, ‘off the shelf’ AT products were rarely available through formal AT services who in general only supplied ‘telecare’. Instead such products had to be purchased either through the private AT market or by buying their commercial, ‘do it yourself’ equivalents. Yet even among those who were willing to consider AT, the perceived increases in cost when compared to what were judged as simple or mature technologies were re-labelled as ‘assistive’ or ‘medical’ technologies were also identified as barriers,
As soon as it’s got a tag on it, like a dementia or disabled or something like that, it suddenly becomes ten times more expensive. I can’t see why that would cost so much when, you know, it’s not massive technology this. It’s not rocket science. (Person with dementia; P101).
Perceptions regarding high formal AT costs, particularly when compared to generic household products which fulfilled similar functions therefore posed a key barrier both for the general acceptability of AT products, and for the continuing development of a mixed economy of AT provision in dementia.