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Background information

The ethical issues linked to the use of assistive technology in dementia care


This report is about the ethical issues linked to the use of assistive technology for or by people with dementia. We will therefore start in section 1.1 by explaining what dementia is, covering different perspectives and ways of understanding dementia.

As dementia is, amongst other things, a potential disability, we will then briefly examine different approaches to understanding disability and make the distinction between impairment and disability. Accepting that dementia is a potential disability means recognising the potential benefits of assistive technology in helping prevent or minimise the impact of impairment on the daily lives of people with dementia.

From a medical perspective

Dementia is defined in the DSM-IV [1] and DSM-IV Text Revision as a syndrome characterised by the development of multiple cognitive deficits including memory impairment accompanied by at least aphasia, apraxia, agnosia or a disturbance in executive functioning (Cummings, 2007).  This means that the typical signs and symptoms associated with dementia include memory problems along with difficulties with language and understanding, recognising and using objects appropriately, sensory-perceptual difficulties involving one or more senses, and making or adapting plans.

Another classification system for dementia is the International Classification of Diseases and Related Health Problems (ICD) of the World Health Organisation. Both classifications mention a decline in memory loss and of other abilities to such a degree that they interfere with a person’s daily life (Whalley and Breitner, 2009).

The neuropathological features of what came to be known as Alzheimer’s disease (which is the most common form of dementia) were described in 1907 by Alois Alzheimer. Originally, the term Alzheimer’s disease was only used to refer to certain cases which would have previously fallen into the category of pre-senile dementia (with symptoms occurring in people in their 40s to 50s). Symptoms occurring in people over 60 years of age were considered signs of senile dementia or senility which was considered a natural part of ageing (Cahill et al., 2007). However, this distinction based on age was eventually dropped when Katzman (1978) discovered the same plaques and tangles which were characteristic of pre-senile dementia of the Alzheimer’s type in the brains of people with senile dementia.

Consequently, in the bio-medical model of dementia, which has for some time been the standard paradigm, Alzheimer’s disease is considered as being characterised by a distinct neuropathology in the brain (Cummings, 2007; Gaines and Whitehouse, 2006; Katzman et al., 1978), thereby separating it from other (non-organic) mental disorders and from normal ageing. A typical description of Alzheimer’s disease is provided by Cummings (2007, p.3):

“Alzheimer’s disease (AD) is a progressive neurodegenerative disorder with characteristic clinical and pathological features. Alzheimer’s disease is aetiologically heterogeneous and can be produced by mutations of chromosomes 21, 14 and 1 as well as by as yet unrecognised causative factors…./… Pathologically, characteristic findings include neuronal loss, neurofibrillary tangles, neuritic plaques and amyloid angiopathy…”

Behavioural disturbances as well as psychological, psychotic and psychological signs (such as hallucinations, “wandering” and repetitive questioning) are often interpreted in the bio-medical model as being direct consequences of neurological impairment.

Extensive work on post-mortem brains demonstrated the difference in pathology between the brains of people with dementia and those without (Tomlinson Blessed and Roth, 1970; Homer, 1988). However, Snowdon (1997) found no direct correlation between neurological impairment and the symptoms of dementia. In one of the few studies involving the post mortem analysis of the brains of 209 people over the age of 80 and 90 (the Medical Research Council/MRC CFAS, 2001), insufficient difference was found between the brains of people with AD and those without (solely in terms of neuropathology).

36% of people with dementia in the study had low plaque scores or no plaques, whereas 33% of people in the no-dementia group had moderate or severe neuritic plaques. Moreover, only 13% of the people in the no-dementia group had a so-called normal brain. The European Federation of Neurological Societies states in its recommendations on the management and diagnosis of Alzheimer’s disease that, save one remarkable exception, there is no specific biological marker for degenerative dementias and that the aetiological diagnosis of dementias can only be made in terms of probability (Waldemar et al., 2007).

The impact of dementia on the daily lives of people with dementia

Leaving aside the debate about plaques, tangles and normal or abnormal ageing, the symptoms of Alzheimer’s disease can affect people’s everyday lives. Most people with dementia will at some time experience difficulties with memory, reasoning, understanding and communication. Some may have difficulty with orientation in time and in space, some may become confused, have difficulty recognising people or using and manipulating everyday objects and some may misplace things. Such difficulties may eventually make it difficult to hold down a job, drive safely, fulfil social roles and manage everyday tasks such as shopping, washing and dressing appropriately and paying bills. Behavioural and emotional changes may occur which other people may find disturbing such as clinging and following, developing delusions, making false accusations, being apathetic or depressed etc.  In addition, some people with dementia will have difficulties with gait, their sleep-wake cycle may be disturbed and in the late stages they may have problems with incontinence.

There may be differences in the experience and expression of dementia depending on the individual, the stage of dementia and also the type of dementia. People with dementia with Lewy bodies, for example, may experience detailed and convincing hallucinations, some of the symptoms of Parkinson’s disease, fluctuating abilities and a greater risk of falling or fainting (Alzheimer’s Society, 2008). People with fronto-temporal dementia may have relatively intact memory especially in the early stages but have difficulty empathizing with others, behave inappropriately, be easily distracted and develop rituals (Alzheimer’s Society, 2009). Finally, people with dementia may have different coping skills and different needs. This long description of possible symptoms and possible difficulties, which is in no way comprehensive, must of course be put in perspective.

A more holistic concept of dementia

People with dementia will not all experience all these symptoms and not all to the same degree either. They will have good and bad days (Chester and Bender, 1999) and many will continue to live active, meaningful lives for many years after diagnosis. Moreover, the symptoms of dementia cannot be solely explained in terms of neuropathology but must take into account psychosocial factors (Gubrium, 1986; Kitwood, 1993, Lyman, 1989; Macquarrie, 2005; Sabat, 2001; Snyder, 1999). Kitwood (1993) claimed that the progression of dementia was not determined solely by the changes in the person’s brain but rather by a complex interaction between five factors (which is different for each person). Please see below.

Figure 1: Kitwood’s model/equation for dementia

 

SD = P + B + H + NI + SP

(Kitwood, 1993, p.541)

Key: SD = clinical manifestation of dementia; P = personality (in the sense of resources for action); B = biography; H = health; NI =neurological impairment; SP = social psychology

 

 

 

 

 

He also highlighted the possibility of “rementing” whereby, under favourable conditions, a person with dementia might show improvements in wellbeing and/or cognitive performance. Examples of rementing challenge the medical model of dementia in that once neurological impairment has occurred and cognitive ability is affected, there should be no improvement other than that brought about by medical treatment.

Kitwood not only provides a more holistic model of dementia which highlights the interaction between neurological impairment, the psychology of the person with dementia and the social environment, but also strongly advocates for the respect of the personhood of the person with dementia. The person is not considered simply as a biological entity or the bearer of the condition but as someone who is at risk of losing their personhood.

  • It is therefore important to recognise that people with dementia have impairments but that their behaviour, wellbeing and capacity cannot be solely reduced to such impairments. This opens up the possibility to take measures to reduce the extent of possible resulting disability and one way to do this is through the use of appropriate assistive technology (AT). The difference between impairment and disability will be explained in the following section.

[1] Diagnostic and Statistical Manual of Mental Disorders (version IV)


Having looked at the different ways that dementia has been and in some cases still is perceived and understood, in this section we will consider a similar development with regard to disability.

Medical and social models of disability

Just as there is a medical model of dementia, so too is there a medical model of disability according to which disability is an abnormal individual limitation resulting from impairment. It is considered a feature of the person; something that was caused by disease, trauma or a health condition (WHO, 2002a). Following this line of thought, disabled people must therefore be helped to overcometheirlimitation or adjust in order to conform to societal norms (Cameron, 2007). In other words, the problem is seen as residing in the individual and the solution in the provision of medical treatment or other interventions. This is not Alzheimer Europe’s opinion.

According to the social model of disability, on the other hand, many of the problems faced by disabled people (including people with dementia) are due to the way that society is organized which is rigid and inflexible, and does not meet their needs. Disability is therefore “the product of the physical, organisational and attitudinal barriers present within society, which lead to discrimination” (Open University, 2006).

In the Graz Declaration on Disability and Ageing (EASPD, 2006), for example, it is acknowledged that many disabling conditions are caused by society. Examples of this might include:

  • the use of computer touch screens for various transactions,
  • the replacement of humans with self-service systems (for washing cars, renting bicycles, filling one’s car with petrol and checking out at the supermarket),
  • codes and passwords to be remembered,
  • abstract signs on public facilities,
  • commercial packaging which does not provide an explanation of the contents.

Such factors are often so taken for granted that any problem linked to their use is considered as residing in the individual and not society.  On the other hand, it would be a mistake to consider disability as entirely socially created and not in any way an attribute of the individual (WHO, 2002a).

Impairment and disability

Nevertheless, whilst a person may have various impairments, it is often the organisation of society which creates excess disability, combined with certain attitudes and behaviour which Kitwood (1990) and Sabat (1994) describe as a “malignant social psychology” (examples of which include treachery, disempowerment, infantilisation, intimidation, labelling, stigmatization, outpacing, invalidation, banishment and objectification).  The following definition of excess disability highlights the distinction between impairment and disability. According to Brody et al. (1971), excess disability is:

"The discrepancy which exists when the individual’s functional incapacity is greater than that warranted by the actual impairment. In short, it denotes a gap between actual function and judged potential function. It was assumed that the excess disabilities could be attributed to treatable physical, psychological, and/or social factors and that they could exist in any of those spheres.”(Brody et al., 1971, pp. 125-126 quoted in Werezak and Morgan, 2003)

A practical example of how an impairment can become a disability is provided by Ezeiza et al. (2008) who explain that a person who has a visual impairment becomes a person with a visual disability when he or she needs to read an important text which other people could read but he or she cannot (e.g. instructions on how to exit a building in case of fire). If the person with the visual impairment had access to a text-to-speech instrument, that specific problem in that specific situation would disappear. His or her impairment would remain but through the use of AT, he or she would have access to the same information available to other people. Another way to ensure that certain impairments are not turned into disabilities is by manipulating the environment (e.g. making public areas “wheelchair friendly” through wider doors, ramps and lower public receptions desks). Cognitive impairments may be less visible but equally disabling.

Failure to recognise dementia as a potential disability may contribute towards seeing “the problem” as residing in the person with dementia and overlooking the way that other people contribute towards it (i.e. turning cognitive impairment into disability). It also has implications for the attribution of responsibility with regard to possible solutions. This was explained by Kitwood in the following way (emphasis taken from the original text):

“Weare basically sound, undamaged, competent, kind.Theyare in a bad way, for they are afflicted with a primary degenerative disease in the grey matter.Theyare thus damaged, de-railed, deficient. …/… In the long run,theywill have to learn to accommodate themselves to the provision that we make for them.”

(Kitwood, 1992, reproduced in Baldwin and Capstick, p. 133)

Moving away from the medical and social models of disability

Feminist perspectives on disability have been influential in challenging the preeminence assigned to normalcy, strength and independence, and the devaluation of disability and of people with physical and cognitive impairments, as well as fighting for inclusiveness and valuing the experience of disabled people (Silvers, 2009; Wendell, 1996). This approach helps ensure that the emphasis on the role of society (e.g. in the social model of disability) is not seen as supporting the belief that physical differences and restrictions are entirely socially created (Morris, 1991) which would amount to a denial of people’s real experience of their minds and bodies and the significant impact that this may have on their lives. 

According to the Convention on the Rights of Persons with Disabilities and its Optional Protocol which was adopted by the United Nations General Assembly on 13 December 2006 and came into force on 3 May 2008, people with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others. Many people with dementia fall into this category.  In an introduction to the Convention, the United Nations describe a “paradigm shift” in attitudes and approaches to people with disabilities with a move away from viewing people with disabilities as "objects" of charity, medical treatment and social protection towards viewing them as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society (United Nations, 2009). This perception of disability avoids over-emphasis on the medical factors as well as on the role of society, and it gives a more prominent place to the individual as a unique person and equal citizen.

Towards a biopsychosocial model of disability

The biopsychosocial model of disability, upon which the International Classification of Function, Disability and Health of the World Health Organisation is based, integrates the medical and social factors of disability (as Kitwood did in his model of dementia). It represents a biological, individual and social perspective of disability and functioning, whereby alongside the medical condition (disorder or disease) and possible impairments, there are contextual factors linked to the environment and the person. Those linked to the environment might include people’s attitudes, buildings, systems and legal and social structures whereas personal factors might include age, gender, experience and coping styles etc. This has been represented in connection with the ICF as follows.

Figure 2: the biopsychosocial model of disability (WHO, 2002a)

  • Disability can be reduced or overcome in a number of ways (e.g. by changing attitudes, providing therapeutic interventions, developing coping skills, adapting the environment or practices and through assistive technology). This report is mainly concerned with the use of assistive technology.

What is assistive technology?

Definitions

Assistive technology (AT) is the term used to describe devices or systems which allow people to perform tasks which they would otherwise be unable to do, or to increase the ease and safety with which tasks can be performed (Royal Commission on Long-Term Care, 1999). This could include “any item, piece of equipment, product or system, whether acquired commercially, off-the-shelf, modified or customized, that is used to increase, maintain or improve capabilities of individuals with cognitive, physical or communication disabilities” (Marshall, 2000).

Although frequently referred to as assistivetechnology(and in the past as rehabilitation technology or technical aids), this does not necessarily mean that devices or equipment all use the very latest technology or are extremely complicated or technical to use or install. Mary Marshall (2000) draws attention to the low-level technologies - the “DIY store” end of the market, which includes things that can be purchased in high street stores, through the Internet etc. such as basic movement detectors, carbon monoxide sensors, light and motions sensitive night lighting and anti-flood devices. The benefits of low-level technology are classed as being readily available for purchase, being able to be used in the person’s existing home, not requiring the installation of sophisticated computer equipment and that they can be easily removed or adapted as the needs of the person with dementia change. An important feature of many of these devices is that once installed they do not require the user to do anything (i.e. they are passive). Consequently, provided that they are suited to each person’s capacities, they are ideal for people with dementia who might otherwise forget to use them or have difficulty operating them.

Goals of technology in the field of dementia care

In the next decade, technology will become more and more important in our ageing society and in the care of people with dementia. Developing towards sophisticated ‘ambient intelligence technology’, the technological devices of the future will be neither active nor passive, but essentially interactive and allow for personalised applications and personalised use, although the question of who will be the user of technology will be more difficult to answer, as these new technologies will play their role often unobserved by the people who profit from them. However, a categorisation can be made between assistive and surveillance technology.

Sometimes AT is categorised as being assistive or for surveillance, or alternatively as promoting autonomy or offering protection. A distinction is sometimes made between assistive devices that are active and enabling and technology involving monitoring or controlling that is passive with a protective function, with the former being more applicable to community dwelling people and the latter being more applicable to people with dementia in residential care. This distinction is further linked to perceived differences in the degree of decision-making capacity between community dwelling people with dementia and those in residential care in that more people in residential care are likely to have a higher degree of incapacity and consequently the technology is actually used on their behalf by professional carers. However, one of the promises of technology is to promote independent living and postpone nursing home admission, to the effect that in the near future people with more advanced stages of dementia and higher degrees of incapacity can still be cared for at home.

In practice, there is often no clear boundary between the two types of technology as depending on its use, the situation and a number of factors, assistive devices may offer some degree of protection and similarly, surveillance devices may be enabling and promote autonomy. Consequently, many devices involve elements of both. Nevertheless, although there is a continuum between both applications of AT, the extremes of this continuum are not morally equivalent (Hertogh, 2010).

AT can be further divided into different categories according to its overall purpose. It could, for example, be described as being:

  • for recreational and social purposes,
  • supportive (helping people to perform tasks),
  • responsive (helping manage risk and raising alarms when necessary) or
  • preventative (helping prevent dangerous risks and again if necessary raising alarms.

To a certain extent, the above categories could also be understood as reflecting a continuum moving from the principle user being the person with dementia to the principal user being the carer. Moreover, not all forms of AT for people with dementia are used by people with dementia because, as mentioned above, some forms are passive. However, the “assistive” part of the term “assistive technology” indicates that they assist someone and this person should be the person with dementia.  If they also happen to make some aspect of daily life a little easier for other people, all the better but this should not be the main aim.

The type of device or system needed and the ability of the person with dementia to use it will change as the disease progresses. In some cases, the device will be used by a carer [1] rather than the person with dementia (e.g. in the case of lifting equipment). Devices and systems which are intended to be used directly by people with dementia must take into account the nature of their condition, their cognitive and possible physical impairments, environmental factors and individual factors such as stress levels, coping skills and ability to adapt. 

Concrete examples of assistive technology

Examples of AT include:

  • devices to remind a person of the date and appointments, to facilitate communication or to take medication;
  • smoke, water overflow and gas detectors;
  • electronic tracking devices or tele-alarm systems linked to a whole support network of trained personnel, ready to intervene in case of emergency;
  • computer assisted devices which can be used to encourage social interaction and stimulate the senses such as reminiscence programmes using touch screen technology; and
  • socially assistive robotics (a developing area which is in its early stages (more details are provided in Chapter 3).

An area of AT that is becoming more common is the “smart home” which has been described by Orpwood (2001) as a building which provides intelligent interaction with the occupants to make their lives that bit easier.  Smart homes contain smart technology which may involve automatic or user-initiated communication by means of various appliances, sensors and switches (Cash, 2003) (e.g. to ensure that bathwater is not too hot, or that the cooker has been switched off, or movement detectors which switch on a light or alert a carer if someone gets out of bed).

Where is assistive technology used?

AT is often associated with the home environment. Astell (2006), for example, describes AT as “a range of technological interventions, typically within the home environment, to assist and support people with dementia to carry out activities of daily living.” However, the home environment can be interpreted as including people’s own homes as well as residential care settings. Certain devices are specifically designed to facilitate freedom of movement outside the confines of the home but the focus is nevertheless on enabling people to move around and, most importantly, to return safely to their homes.

Being able to drive is often associated with independence and quality of life. For this reason, people with dementia are often reluctant to give up driving.  Some attention has been paid to problems encountered by older drivers (e.g. using complex visual displays) and the need to develop satellite navigation systems which do not rely solely on “distance to turn” instructions but rather incorporate landmarks (e.g. external reference points such as traffic lights, pedestrian crossings, petrol stations and distinctive pubs) to indicate the need to turn (May et al., 2005). This reduces the time spent looking at the screen (which tends to be longer for older drivers) and the need to estimate distances and may make it easier to plan and follow routes. This study was not tested on people with dementia but  the future development and adaptation of such existing technology could perhaps eventually benefit those in the early stages who still have sufficient driving capacity.

Nevertheless, according to Blackman et al. (2003), the lack of published guidelines on the design of outdoor dementia-friendly environments seems to reflect a presumption that the lives of people with dementia are “home-based,” although they acknowledge that there are greater technical difficulties in trying to control outdoor environments.

What are the potential benefits of assistive technology?

Enabling/promoting autonomy and wellbeing

AT can be beneficial to people with dementia in that it can support and facilitate their memory, orientation and other cognitive abilities (e.g. enabling them to continue doing things for themselves). This may help them to remain active and continue living in their own homes and in a familiar social environment, and to maintain meaningful occupations and valued social/family roles. This may, in turn, further preserve their remaining capacities which is important for self-esteem.

AT has the potential to promote independence, autonomy and wellbeing. Studies have shown that AT has proven useful for people with dementia and their carers (Cahill et al, 2007; Hagen et al. 2005; Macijauskiene et al, 2006; Topo et al, 2007). AT may, in some cases, contribute towards peace of mind for carers linked to safety concerns, repeated questioning and passivity. The increased autonomy, for example linked to people with dementia being able to use a cooker, find keys and go out alone, may help reduce some of the strain and worry that many carers experience. The cost effectiveness (Woolham, 2005) and cost-benefit (Duff and Dolphin, 2006) of implementing assistive technologies (mostly simple stand-alone devices) have also been shown.  

However, benefits can only be described as potential because everyone is different and has their own history, personality and living situation. Usefulness is clearly dependent on a multitude of factors related, for example, to the person with dementia, the carer, the relationship between the two, the device or system itself and the environment.  Moreover, AT is often provided in combination with additional expertise and forms of care and it is this overall care package which is beneficial (Marshall, 1999).

People with dementia in residential care may also benefit from AT. Whilst there are professional carers available to assist them with activities of daily living, the use of certain devices and equipment may help them to retain some of their capacities longer, at some point combining AT with human assistance before eventually becoming dependent on others for certain tasks.

Providing protection and a safe environment

Some devices serve as a safety net to enable people with dementia to reduce the possibility of accidents occurring such as scalding themselves, causing fires, floods or explosions, or falling in the dark etc. This is achieved by the installation of devices which either automatically control certain aspects of the home environment or provide simple warnings whenever the person is at risk. In such cases, the benefits may be threefold: firstly, for the people with dementia for reasons already discussed; secondly, for carers in that it may provide them with peace of mind and reduce stress and thirdly, for professional carers in residential care settings who may  be freed to concentrate on other aspects of care such as social interaction.  

Freedom of movement is closely linked to the issue of safety and includes the freedom to walk about freely and to leave one’s home or care establishment without fear of punishment but also to get in and out of bed or a chair without restriction (such as rails, fold-down trays or straps). AT can provide a means of monitoring and controlling exits or areas which make it possible for a person to move about freely and safely. This is one area of AT which also raises important ethical issues which will be discussed in Chapter 3 of this report.

It is necessary to find the right balance between ensuring safety and fostering independence. Sometimes, there may be conflicting views between people with dementia, carers and professional carers about which should take precedence.

Contributing towards quality of life and social inclusion

AT is not limited to providing a safe environment and promoting independence. It may also contribute towards respecting people’s dignity and right to privacy, improving communication, breaking isolation, providing leisure activities and generally promoting quality of life and personal wellbeing.

People with dementia, carers and professional carers may have different priorities when it comes to the use of AT and see different benefits in it, partly based on their different experiences, roles and interests. A review carried out by Topo (2009) found that studies reported a greater concern amongst carers about safety issues and managing activities of daily living (Kirsi et al., 2004; Pollitt et al., 1991) compared to the concerns of people with dementia which were more about finding meaningful activities, managing to sleep and living with the insecurity of disorientation in time and space (Harris, 2006). The interests and concerns of people with dementia linked to the use of AT should not be neglected due to the paternalistic attitudes and behaviour of others.

Benefits in the context of professional and/or residential care

Godwin (2008) points out that the needs of professional carers are often given insufficient attention with the result that people with dementia may end up being moved into more restrictive residential facilities. Consequently, it is important to explore the use and benefit of AT for all concerned and not just for the sole benefit of the person with dementia even though the use of AT should, first and foremost, be for the benefit of people with dementia.  

The use of AT for older people may also be beneficial to health and social care organisations in that it may reduce the need for beds in acute and long-term care, and for personal assistance at home, although research to support this claim is unfortunately lacking (with the exception of client case studies and a study using a cross-sectional survey design) (Beech and Roberts, 2008).

Whilst there is a risk that AT will be used to replace human care, it is also possible that it might lead to a reduction in the level of stress amongst professional carers, thereby enabling them to provide more person-centred care (Marshall, 1997) and as previously mentioned, increased social contact. This is important as some carers have expressed concerns that AT might replace human contact (Sävenstedt et al., 2006).

Assessing the possible benefits of AT

Assessing the benefits of AT in general is difficult as AT is usually part of an overall care package, often accompanied by a network of support staff. Consequently, a more pragmatic approach to the assessment of benefit, incorporating a range of methodologies, is needed (Beech and Roberts, 2008). In the context of the ENABLE project, technology seemed to play an important role in enabling people to remain living independently for longer than those who did not have access to it. This benefit did not seem to be based on factors such as age, the degree of dementia, other participant characteristics or a larger care package but rather on motivation, relation to the carer and factors related to the product and the environment (ENABLE, 2004).

It must also be borne in mind that there may be differences of opinion and that some people with dementia may accept or choose a specific device or system, whereas their spouses might not (or vice versa). Also, studies to assess the perceived benefits of AT should ideally involve people who have consented to its use but unfortunately, this might be a biased sample. Lilja et al. (2003) found that elderly people with disabilities who accepted care supported by AT were more positive about the perceived benefits of it compared to those did not want to have it. They also more readily accepted the necessity to modify their living environment compared to those who did not want any disruption of their home and life.

However, a small-scale study involving 20 people with dementia and their carers in Ireland recorded mixed reactions to the use and benefits of AT (Cahill et al. 2007).  Five types of AT were tested and evaluated. Dissatisfaction was expressed with three devices (the automatic night lamp, the gas cooker monitor and lost item finder) due to technical difficulties and carers reported having to remind the person with dementia to use the devices. The night-and-day calendar and the picture telephone were very popular whereas the lost item finder was considered more useful by one of the carers than it was by the person with dementiafor whom it was intended. This study was part of the ENABLE project in which80 people with dementia and their carers in 5 countries completed an assessment study for at least 3 months. Numerous scientific articles concerning the results of the whole study are available (please see:

http://enableproject.org/download/Enable%20-%20Scientific%20articles.pdf ).

Sävenstedt et al. (2010) argue that research into the perceived usefulness of assistive technology neglects the views of people with dementia who have communication difficulties or replaces their voice for that of the carers despite the fact that some researchers have shown that it is possible to obtain meaningful data from people with dementia, who have difficulty expressing themselves, by means of adapted interview strategies (Moore and Hollett, 2003). An alternative or additional method of assessing usefulness and user-friendliness of AT is through observation. Using a combination of different methods of data collection can also be beneficial and provide a much fuller understanding of the possible benefits of AT. There is no need to rule out quantitative methods of data collection (e.g. involving structured questionnaires and response scales) which may also be administered effectively provided that they do not take too long and perhaps with the use of oral and visual techniques (Trigg et al., 2007). However, Hagen and Cahill (2009) suggest that randomized controlled trials (RCT), which are a specific type of quantitative study in which one group of people have access to an intervention and another similar group does not, are unethical as they involve knowingly denying a particular vulnerable group access to an intervention which is believed to work and would presumably be beneficial to that group.

The installation or use of devices and equipment can never guarantee specific benefits and can be used in a negative or positive manner. For maximum benefit, it should be adapted to the needs and wishes of the person with dementia, be easy or intuitive to use, the least obtrusive and based on consent.

At the level of the individual, Bjørneby, Topo and Holthe (1999) suggest assessing the possible increased or decreased likelihood of a range of possible outcomes, namely increased/decreased:

  • social contact
  • self-esteem
  • dignity
  • quality of life
  • independence
  • safety

and to consider to what extent these consequences are more or less important to the person with dementia, his/her family and professional carers. This could change as the condition and needs of the person with dementia and even his/her living arrangements change. Finally, when assessing the potential benefits of AT for people with dementia, it is necessary to consider the impact of the technology, of the personal characteristics of the person with dementia, of the family carer(s), of the environment and of the procedure and people carrying out the assessment (Hagen et al., 2004). 

Based on a recent review of 66 studies, Topo et al. (2009) conclude that research into the role of technology for people with dementia is still in its infancy, that ways to promote studies looking at the perspectives of people with dementia at home must be found and that national and international multi-disciplinary studies are needed to determine the possibilities and limitations of technology to support people with mild to moderate dementia and their carers living in the community. 

Case study demonstrating the organisation, use, benefits and review of AT in the home

The following case study entitled “Night time at home” by Fiona Taylor provides a real example of how AT was organised and implemented on behalf of an elderly lady in order to enable her to continue living in her own home in a small town in Scotland instead of having to move in to a nursing home. It highlights the benefits of AT and demonstrates how its use was reviewed and adapted to this lady’s needs and lifestyle. The case study is taken from:  Taylor, F. (2010), Night time. InTime for Dementia,Eds. J. Gilliard and M. Marshall, Hawker Publications, London

“Night time” by Fiona Taylor

 

Initial referral

Mrs Brown was first referred to the social work department by her GP who asked for a “nursing home assessment”. The social worker who was allocated the case felt that this would be a bit hasty, and that they could provide a range of services that could support Ms Brown to live in her own home for some time yet. The initial assessment did however highlight a few significant risks in Ms Brown’s lifestyle.

Ms Brown was 80 years of age and lived alone in the main street of a small town in Scotland. As she was an only child who never married she had no immediate relatives and although she had a few neighbours who helped out now and again, these too were becoming frailer and less able. Ms Brown had arthritis in her hands which made many ordinary living tasks very difficult and sometimes painful for her, she was also a bit forgetful, but liked to be independent and was not prepared to be told what to do or when to do it.

Ms Brown had worked as a nurse all her life and particularly enjoyed working nights. She always liked the quietness of night time and stated she still found great pleasure in looking out of her window at night at the various constellations, sometimes she even sat in the garden and enjoyed  the view on cold winter nights along with a “wee whisky”. As she worked shifts all her life she had what some people would consider to be an erratic sleep pattern  and she ate and slept at odd times throughout the day and night. Sometimes she decided not to get dressed and have a lazy day in her pyjamas. And at other times she had a burst of energy and decided  to clear out all her drawers and cupboards during the night.

Her memory loss was having some impact on her life and with growing regularity she  forgot to take her medication, and then took a few together to make up for the missed ones. She was not quite sure how often she ate, but assured the worker she was well fed and that there was always plenty of chocolate in case she felt hungry. Her neighbours were worried about her being out at night and spoke of the many days when she did not get dressed. The local green grocer, supplied her with her weekly shopping and she always had the payment sitting ready for him. As the post office was only a few doors away she continued to collect her own pension, however when the pavements were icy the owner phoned her and arranged for someone to pop along with it for her.

Provision of services

 A home support service was arranged to assist Ms Brown with washing dressing, food preparation and getting ready for bed each night. Visits were arranged 3 times each day, 7 days a week. As an extra precaution the overnight visiting service were alerted and asked to call in if there were lights on in the house. A key safe was fitted to allow the staff easy access.

However, within the first few weeks it became increasingly obvious that the care package was not working.  Although there were times when Ms Brown was glad of the help around the house during the day there were other times when she became quite aggressive towards the night support staff and either refused to co-operate or else she put them out of her house. As tensions rose she became quite agitated and was regularly found knocking the doors of neighbours to complain about intruders in her home at all hours of the night.

A case conference was arranged and at that point in time it seemed the most obvious outcome would be an admission into care. However, during the case discussion one of the student social workers who were in attendance suggested that perhaps assistive technology could be tried to support Ms Brown, as a last resort before arranging an admission to a care home.

New care package

A selection of Passive infra red Beams (PIR) was fitted in the house. These were linked to the local call centre but set with time delay switches. These would inform overnight visiting staff when Ms. Brown was actually up, during the night, therefore preventing them popping in when she was sleeping and ensuring she had the opportunity to open the door to them, if she wished. 

A PIR reminder light was fitted to her front door. The home support worker activated this when she left in the evening and this reminded Ms Brownnot to go out of the front door, as it was not safe. These were deactivated by the support staff in the morning as the risks were considerably less during the day and the assessor did not want to prevent her from going out and chatting to neighbours and friends in the local community. Her back door was fitted with a time delay door contact. This meant that if Ms Brown chose to go out at night to sit in her back garden, she could do so, and only if she had not come back in within the hour would the overnight staff be alerted.

As Ms Brown was often quite active during the night clearing out cupboards and tidying up when she felt energetic the overnight visiting service were asked not to interrupt this routine, but to take this opportunity to offer tea and a light snack if they were invited in. This would make up for any meals she would decline the following day when she was tired.

The home support staff that supported Ms Brown during the day and night were provided with digital pens 1 this meant that they could send each other a messages to say what she had eaten, whether she had slept and when she was most likely to need support again. In this way the workers could fit in with what suited her best rather than calling in when she had just gone to sleep or making her breakfast shortly after she had just had a snack from the overnight service.

Change of support plan

When the technology was originally installed the technicians had put in place an automatic lighting system. This meant that when Ms Brown arose in the dark, lights were activated that ensured she could find her way to the toilet safely. These would turn themselves off when she was back in bed. However, these were quickly removed as staff soon discovered that Ms Brown became very agitated and could not return to bed when the lights were still on. She was worried, not only about her electric bills but because she wondered who had put the lights on and thought there was someone in her house.  Eventually, staff found that a touch lamp would provide sufficient lighting to allow her to go to the toilet, without having to fiddle with a small switch. She could easily switch this off herself on her return to bed.

Ms Brown continues to enjoy living in her own home with her own routine, and is supported by staff when she needs it.

Source: Taylor, F. (2010), Night time. InTime for Dementia,Eds. J. Gilliard and M. Marshall, Hawker Publications, London.

 

1 digital pens – these are electronic pens that have a small camera inserted just beside the nib. When someone writes a note or draws a diagram- this is photographed and sent to a pre-programmed mobile phone number. In this case study the digital pen was left in the person’s home beside their communication page and the 4 home support staff who regularly provided a service to Ms Brown were given mobile phones to aid their communication.

 

 

[1] The term “carer” will be used in this report to refer to a person who takes care of someone with dementia on an informal basis (i.e. it is not part of their paid employment even if in some countries some carers receive a small payment from the government in recognition of their valuable work). Often carers are relatives but this is not always the case which is why we do not use the term “family carer”. In most cases, they did not choose to become a carer but circumstances of life resulted in them becoming one. People who care for people with dementia in the context of paid employment will be referred to as professional carers.  Sometimes, to clearly differentiate between the two types of carers we will use the terms “informal carer” and “professional carer”. This distinction does not imply any difference in the quality of care provided by either.

 

 
 

Last Updated: lundi 23 avril 2012

 

 
 

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