Monitoring in dementia care and caregiver burden

Monitoring technologies are developed with mainly two goals in mind: enhanging independence and mobility of the person living with dementia and decreasing caregiver burden. Kenner (2008, 253) proposes that these two features make monitoring systems “attractive”, while e.g. Olsson et.al. (2015, 38) conclude that:

“The present study demonstrated that the use of a PPA [passive positioning alarm, edit BS] could provide support in daily life by allowing PwDs to engage in independent outdoor activities and decreasing their spouse’s worry related to these activities.”

While I still need to summarize my understanding on the discussion around mobility I want to focus in this post on the impact of monitoring on caregiver burden.

My literature has shown that “reducing caregiver burden” is a common goal for many sorts of technologies, and surveillance technology is no exception. Many studies found a positive effect through monitoring technolgy such as Faucounau et. al.  (2009, 580), who sum up the effects as follows:

“Among these interventions, electronic tracking systems are available technologies which allow to manage these crisis situations, to locate more quickly the person who wanders outdoors and thus to reduce anxiety and psychological burden of informal caregivers.”

But the introduction of technology is not only seen as a means to relieving burden. When discussing the possible impact of assistive technology on their lives, informal caregivers voiced there concern that “introducing COACH  [an intelligent prompting system for handwashing, edit BS] in the home would shift caregivers’ burden from caregiving to managing the technology.” (Hwang; Truong; Mihailidis, 2012, 45) In my opinion this view seems to emphasise that all activites around caring are considered burdensome.

Purkis and Ceci question this view in their problematisation of the concept of ‘burden’. They argue that the concept has been accepted as a ‘fact’ and this falls in a tradition of academia to “stolidly building up a picture grounded in accepted ideas rather than working to develop new and interesting questions.” (Purkis; Ceci, 2015, 1412) Analysing how the concept of burden is built up, tried to be quantified and used to validate research, they outline a couple of limitations with the current research. They observe that  caregiving is considered “a ‘role’ that can be examined separately from other roles.” (Purkis; Ceci, 2015, 1415) and go on to say that a wider network that may influence this role is left out deliberately from many studies:

“Where physical, organisational or familial arrangements are supportive of these care-giving relationships, readers are unable to learn about how such supports are experienced because they are carefully – and deliberately – left out of the research account.” (Purkis; Ceci, 2015, 1425)

This seems important in the context of technology development as it not only defines further stakeholders, but also leaves out a lot of contexts in which the technology might be used. And Purkis and Ceci (2015, 1414) also observe that the situation of caregiving is often stylised in research, again quite deliberately:

“Though diversity, complexity and particularity might be acknowledged, these characteristics of everyday, relational existence are often treated as (simply) barriers to good research results that might be surmounted through, for example, even greater standardisation in research and intervention practices (e.g. Malonebeach and Zarit 1991; Ornstein and Gaugler 2012).”

In regards to technology development, I think this mirrors the often limited view that is taken when people design ‘for dementia’, for which it is often acknowledged that peoples wishes and needs may be different, but the result is nonetheless a one-size-fits-all object, that tries to appeal to a rather general audience.

Before reading this problematisation I have come across the term ‘caregiver burden’ so often that I accepted it as a fact. It is quite complex to argue with. Because relieving burden, i.e. depression, anxiety and stress of people must be a good cause and it can therefore be argued that the technologies must go ahead, even if the privacy of the person with dementia may be affected. But it has also been a term I have been critical about as it emphasises the medical view on dementia and it draws on the narrative of loss that surrounds it. It is therefore questionable when it is used as legitimasation for the development of technology as these will be based on this narrative as well and might stand in the way of developing “new and interesting questions” as stated so poignantly by Purkis and Ceci above.

Even though I want to by no means imply that caring can not be considered burdensome and that it has a considerable impact on the caregiver, I start to agree with the above authors that the concept of ‘burden’ needs to be considered carefully when used as legitimisation, especially when used ‘theoretically’ without user enegagement.

But even if we accept ‘burden’ as a concept, how can monitoring technology have an impact? Kenner (2008, 264) argues that “they provide a means to track and control dementia without the immediate presence of caregivers.” Which points towards two important factors: caregiver respite and cost of caregiving.

Reducing caregiver burden is not only an aim in itself. According to some authors it has a beneficial effect on the Quality of Life of people living with dementia, e.g. by delaying move into care facilities as described by McHugh et.al.(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.”

Relieving caregiver burden is a laudable goal, not only in itself, but also with possible implications for the people living with dementia and the wider society. Nonetheless it is a conept we should be critical about when applied generally and without direct user input. In a common current narrative in contemporary academic literature, the concept of burden is widely accepted and used to justify possible breaches of individuals privacy. I question this approach as it needs a more personal and more interactive narraive than the one currently in place. I also believe that caregiver burden may not be ambitious enough as a goal. What about: Creating opportunities for chats and communication? What about: creating memorable moments? What about: bringing back the fun that may have gone lost in the everyday of a relationship? In their critical evaluation of research on burden and ways to reduce it, Purkis and Ceci (2015, 1416) state a lack of new ideas, but say that “researchers have been working with the same set of fairly mundane interventions: brief respite, emotional or social support, and education.” Monitoring as proposed now by simple tracking technologies falls into the category of “brief respite” in my opinion.

Even though Campbell (2008, 71) describes practices much more intrusive and more impactful than  tagging or tracking technologies I want to close with a quote from her chapter, as I think it sums up a very important point. Even though monitoring technologies may have a positive impact on perceived caregiver burden as observed above, it may come with a price:

“Instead it is time to recast the question in light of the proliferation of intrusive surveillance regimes. Why accept intrusive surveillance not only as part of the cost of doing business but also as part of institutional routines that are supposedly supportive and therapeutic?”

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