One of the themes that crystallise from my literature review is the question: “Who uses technology?” and “Who benefits from the technology available?” This is due to the fact that people with dementia rarely live alone. In contrast they are connected to a wider network of people they share their house with, partners or next of kin, who also in a way ‘live with dementia’ and who have very strong -and often contradictory- views on how technology can and cannot be used. Siriaya and Ang (2014, 3977) describe the impact the illness has as follows:
“Dementia not only affects those suffering from it but also incurs a personal cost to those taking care of them. Therefore, there is a strong interest in finding ways to assist the care of people with dementia.”
In this post I want to outline some preliminary thoughts from my literature review on technology and dementia. It is not a full review, but rather a reflective post to enable me to explore the topic and my thoughts on it.
Most research approaches try to encompass both the views of people living with dementia and the ones living with them, often considered the caregivers. Given the closeness outlined above, this appears a reasonable approach, But as Schikhof and Mulder (2008, 479) warn, this can confuse the aims: “One should be careful, however, not to confuse the needs of these relatives with the needs of the residents.”
Lindsay contrasts this observation with an account of how listening to people with dementia changed their approach to a design project: “In working directly with the people with dementia, we found that we became focused more upon their needs rather than their caregivers so there was a natural emphasis on supporting the activity, not management of symptoms.” (Lindsay, 2012, 1)
Martins et.al (2014, 4) critizise the limited view on the network of people living with dementia: “There is a pervasive trend for these tools to be designed around the PwD and a very limited set of caregivers.” Using online social media, they propose to engage a wider network to get a better understanding of the people with dementia and provide a cognitive prothesis. In addition the authors “call for a paradigm shift where the PwD is placed in a center of a larger support network than what is seen in most cases nowadays.” (ibid, 1) Even though they ackowledge privacy issues with their approach and highlight that networks may decrease after the diagnosis, they argue that through social media the neworks may be maintained: “Further, the relationships between the PwD and these multi-level support networks (family, close friends, neighbors, restaurant owners, officers,..), which are often otherwise rendered inexistent, can be maintained if the different stakeholders feel engaged.” (ibid.) I found this position highly interesting as it shows a new trend that is mirrored by non-technical approaches as well. During the International Dementia Conference the slogan: “It takes a village” has been quoted repeatedly and initiatives such as the Dementia Friends try to raise awareness and therefore increase the wider support network people with dementia can rely on. It would be very interesting to look into this deeper, possibly through explorative prototypes.
In contrast most pprojects address the person living with dementia – caregiver relationship. This relationship often is so strong that it has been described as a “dyad” (compare e.g. O’Neill et.al., 2013, 169 f.) And it is a relationship complex to analyse as different power structures come together. Most development projects argue that products that support the caregiver reduce carer stress and as such benefit the person living with dementia by minimising institutionalisation, as described for example by McHugh (2012, 220):
“The burden on the caregiver contributes to levels of stress and depression, which is found to be a strong predictor for patient referral into institutionalised settings. Therefore, addressing caregiver consequences not only affects their perceived ability to cope, but also plays an important role in helping people with dementia remain at home for longer and reducing cost to health care systems.”
Boger et.al. (2006) share this view, but describe a slightly larger benefit for the person with dementia directly: “Assistive information technology has the potential to delay institutionalization by alleviating some caregiver duties while restoring partial autonomy to the care recipient […]”. (Boger et.al., 2006, 323)
One aspect in which the relationship becomes very important is access to technology. Both in private settings and care homes is the caregiver considered to have a key role in the decision which assistive technologies are accessbible to someone living with dementia. One important factor is the perceived ‘carer burden’, as identified for example by O’Neill et.al. (2013, 171):
“In addition, the role of the carer was viewed as being very important, with factors such as carer burden, encouragement for the PwD, their perception of utility and their technology experience being viewed as relevant in modelling technology adoption.”
Lazar (2014, 255) also picks up on this and emphasises the need to take it into consideration in care home settings: “There is a clear unmet need for stimulating activities that don’t place an additional burdens on staff, the MCU or the healthcare system.” Context of use becomes very important in this setting in which the technology needs to fit into the everyday or needs to replace other tasks and activities. Boger et.al. (2006, 324) emphasise that assistive technology ” has promising potential to substantially augment caregiving duties.”
But it has been noted that access might have been prevented “if family caregivers were opposed to the use of this device” (Altus et.al, 2000, 122) or even in a care home setting:
“In some cases the researchers believed that care professionals were negative to the use of technology in dementia care. It was felt that these attitudes may have prevented the user from actually getting a device that he or she was interested in.” (Bjorneby et.al, 2004, 307)
But also the opposite has been noted: “In some cases, the researchers discovered that the family carers wanted the product very much, while the user was not interested.” (Bjorneby et.al, 2004, 307)
Even though there is a strong emerging field to design specifically for someone living with dementia (compare for example work by Astell et.al. or Wallace et.al.), there is still a prevailing view that both caregiver and someone living with dementia benefit from assistive technology. This places many technology project in the context of care from the ideation phase. Even though the importance of the ‘dyad’ between people living with dementia and those close to them is well established, the power structures that result from this lack evaluation in my point of view.