How assistive technology support cognitive
disability, secure active living for persons with
dementia and enhance new interfaces between
formal and informal care in the area of
dementia.
Lilly Jensen a1, Ingela Månsson b, Torhild Holthe c, Tuula Hurnasti d, and Þórdís
Guðnadóttir e.2
a Danish Centre of Assistive Technology, Denmark. b The Swedish Handicap Institute.
Sweden. cAgeing and Health. Norwegian Centre for Research, Education and Service
Development. Norway. d STAKES. Finland. e Center for AssistiveTechnology. Iceland
Abstract: The aim of the research project is to get knowledge
about the use of cognitive assistive devices in the daily life of
persons with cognitive impairment caused by dementia. The
objectives are to enhance the use of assistive technology in the area
of dementia in order to secure a high degree of personal
independence and quality of life. 29 persons with the diagnosis of
dementia and/or their relatives as well as professionals from the
service delivery of assistive technology were interviewed about
their experiences on the assessment of need for assistive devices,
the implementation and the use of the cognitive assistive devices in
the daily life. A thematic qualitative analysis focuses on the
usefulness and benefit of cognitive assistive technology in the daily
living for persons with dementia and on the function of the service
delivery system in order to find relevant procedures for delivering
of cognitive assistive technology to persons with dementia. The
results show that assistive technology can enhance the
independence and quality of life for people with dementia, and
therefore promote a sort of new interfaces between formal and
informal elderly care in the area of dementia. A guideline for
service delivery of assistive technology has been developed
concerning the area of dementia, and the case stories with
description of assistive devices and their use show the effect on
formal and informal care.
Key Notes: Dementia, cognitive assistive technology, daily living, service delivery guidelines.
1
Email. [email protected]
The mentioned authors are the national contact persons for the project team,
which consist of 11 occupational therapists from the 5 Nordic countries
2
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Introduction
In the Nordic countries as in other European countries, there is an expected growth
of older people in the next decades. The trend is that a greater amount of older people
will live alone due to new family and living patterns. Cognitive impairments and
dementia diseases are frequently seen in the ageing population. The risk of having
dementia increases with age, and prevalence is estimated to 20% in the age group
above 80 years (Engedal 2005). Dementia diseases do not only strike the person who
gets the diagnosis, but the whole family. Family carers mainly provide care for persons
with dementia (Ulstein 2005). In later stages of dementia, home based services and
nursing homes are involved.
Focusing on persons with dementia, living at home, alone or with a spouse, - it is
important to identify what challenges they experience and how to support them in
every day living. Is it possible that technology that aims to compensate for cognitive
impairments may be of beneficence for persons with dementia and their carers?
The project Technology and Dementia in the Nordic countries investigated
procedures of user needs assessments, implementation and use of AT that may support
people with dementia at home.
From 29 case stories there are developed guidelines that may help health
professionals and family carers to discover the potential within technology. In order to
identify criteria of success and what factors makes technology work, good solutions are
highlighted in this presentation. The aim is to inspire health professionals to utilise the
potential AT may have for persons with cognitive impairments, to facilitate safer and
easier everyday living and change formal and informal care of people with dementia
towards a focus on independence and personal control of daily life for the person with
dementia and their family.
Design of the study
The aim of the research was to get knowledge about the actual use of cognitive
assistive devices and also to identify factors important for considerations in the process
of delivering assistive devices to persons with cognitive impairment caused by
dementia.
In the long term perspective the objectives were to improve the quality in the
service delivery and to increase the opportunity for people with dementia to use
assistive technology in order to
 preserve independence
 preserve important activities of daily living
 preserve security in everyday life
The data for the qualitative analysis (Silverman 2000) presented in this paper are
29 descriptions - organised in a template (Crabtree 1999) - of how persons with
dementia use cognitive assistive technology. The descriptions are based on interviews
of users with dementia (if possible), of relatives and of the professionals responsible for
the service delivery of the technical devices. A common interview guide was used
(Ezzy 2002)
2
The template for organising the interview data (Crabtree et al. 1999) contained the
following groups: The user, the assistive devices, the service delivery process, the use
of the AT and ”other issues” (Hagen et al. 2003, Hagen et al. 2004, Cahill et al. 2004)
With rigor (Krefting 1991) a thematic content analysis was performed of the
organised data (template organising style of interpretation (Crabtree et al. 1999) in
order to elaborate guidelines for the service delivery process of AT for persons with
dementia.
The method is based on the following literature: Marshall et al.1999, Silverman
2000, May 2001, Ezzy 2002, Fulcher et al. 2003, Bryman 2004, Somekh & Lewin
2005.
A qualitative interpretive methodology is to be used (Somekh & Lewin 2005).
Ethical issues
All the interviews were made anonymous and the data were treated with respect
and caution.
The research was performed in harmony with the Guidelines for Good Scientific
Practice produced by the Danish Committee on Scientific Dishonesty and the Danish
Social Science Research Council. Both groups emphasize respectful, careful, ethical
and protective (of the citizens) handling of qualitative data in social research.
Inductive thematic analysis
No theories or previous categories were applied for the inductive thematic analysis,
where concepts and theories emerged from the data. The researchers had to be aware of
their personal inherent theoretical preferences and values - in this case ex the
occupational therapist’s theories about the importance of activity of daily living and
assistive technology.
The inductive thematic data analysis process tore the text apart and then unified it
again in groups of connected concepts, which showed elements or aspects that ex could
be used for theory building or a more comprehensive understanding of the area of
research. The analysis continues until saturation occurs: when no new categories or
concepts stand out. During the process it was important that the researchers also tried to
find concepts, which did not harmonize with the identified concepts or categories in
order to strengthen the dependability of the study (Krefting 1991).
The case stories were analysed using thematic analysis according to the work of
Ezzy (2002). Inductive open coding was used to find themes within the cases. The
process was as follows:
1.
2.
3.
A complete knowledge of the case stories was achieved by studying them
thoroughly and by reading them repeatedly.
Parts of the stories relevant for analysis were identified. They were the
sections, which already are described in the case stories that are based on the
data from the interviews. Then each sentence, phrase or word was scrutinised
looking for meanings, feelings or reasons relating to assistive technology,
service delivery and its importance and influence (open coding). These
meanings were coded.
These codes were then scrutinized by comparing the text, the codes and the
notes taken during the coding. The code’s properties were described by
sentences or words from the case stories.
3
4.
5.
Then the relationship between the categories was studied by comparing their
properties and by relating to parts of the case stories or to the case stories as
a whole.
Finally, the central category or meaning of the categories/themes (selective
coding) concerning user benefits, the usefulness of assistive technology,
service delivery aspects etc were looked for by studying the relationship
between the categories identified and the main messages of the case stories
and then by relating the notes from the diary to both the total meaning of the
case stories and to the main categories and their properties.
Trustworthiness of the study
In order to secure the rigor of the study concerning true value, credibility,
consistency and neutrality a number of measures were taken.
The aspect of true value (credibility) were aimed at by giving a detailed description
of the research process, which were be carried out with a structural coherence in
philosophical background, methodology and research methods.
A triangulation has been used by analysing the case stories independently by two
researchers.
Transferability (applicability) was met by a detailed description of the sample and
of the complete research process, which together with the triangulation of researchers
also strengthened the dependability (consistency).
Some researchers (Lincoln, 1994) find that the subject of authenticity also aught to
be taken into account when dealing with trustworthiness of qualitative research.
Authenticity deals with the wider impact of the research on the study group. When the
researcher uses records from people with a disability he or she must, for example, take
care of promoting their rights and possibilities and not just confirming ‘attitudes that
are grounded in the ablest’ (Hammell 2000:67).
In this study the overall aims were, among others, to enhance the service delivery
system of assistive technology for the benefit of the users with dementia and to
promote and enhance the perspective of the users in the area of assistive technology
delivery and development. With these aims and with the intention to disseminate the
results of the study in a form and with content, that is also made available for the users
of assistive technology, the issue of authenticity was to some degree taken into account.
Limitations
This research had some explicit limitations:
 It is important to mention that the analysis was performed on data from case
stories, which were been written by different people in different countries
although they used a common frame.
 The data from the interviews were collected on the background of a questionguide, which might have narrowed the collected information.
 The researchers with a background as OT’s and professionals in the area
might have interpreted the data using their own values and ideologies.
 The study has no peer audit, which would especially have strengthened the
credibility and dependability of the study, because then the interpretation of
the material would not rely on just the professionals.
 The study does neither include prolonged and varied fieldwork nor use
theoretical sampling or time sampling to secure data from as many different
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situations as possible. This, in particular, might have helped to increase the
transferability.
The limitations of this research indicate that the findings cannot be directly
transferred to different settings and must be used with rigid care. These findings can,
however, be used as inspiration for practice and as a contribution toward further
research on the use of assistive technology in the daily living of persons with dementia.
Involved in the project were 11 occupational therapists from the 5 Nordic countries
(slide 5). The occupational therapists collected the data for the research project by
interviews with about 5 persons in each of the countries with the diagnosis of dementia
and who used assistive technology devices. Interview with their relatives and involved
professionals were also conducted.
The result is 29 comprehensive accounts of how people with dementia in different
stages use assistive technical devices successfully.
Timetable
The timetable for the study was as follows:
 Data collection during 2006. The result was 29 case stories of how people
with dementia in different stages use assistive technical devices.
 Analysing the case stories was finished October 2007
 Writing a book from November 2007 to Marts 2008 with case stories and
guidelines for service delivery of assistive technology for people with
dementia.
 Disseminating the results and advertising the book in spring 2008
Description of the users
Table 1 gives a characteristic of the persons with dementia concerning their age,
accommodation and how many years they have had the diagnosis of Alzheimer disease.
Table 1. Characteristic of the persons with dementia
No. Age
span
Average
age
Average years after
getting the diagnosis
Private
house
Live alone in
private house
Rest
home
Female
19
54-87
76,7
2,8
12
11
7
Male
8
62-83
68
2,1
7
0
1
The technical devices, which support cognitive disability
The persons with dementia used a great variety of assistive devices, which
compensated for their cognitive impairment, ex (organised alphabetically):


Ball blanket - a tranquillising and sense-stimulating aid
Coloured guide to the toilet and light to lead the way
5

Cooker alarm. Installed on the stove, which turns off the stove after a certain
time-interval or turns off when the stove gets too hot.
 Electronic animal (robot) or special therapeutic doll for commitment
 Electronic calendar (Sigvart). Whiteboard, which shows the time spatial and
which can be coded to give alarms every quarter of an hour. Can be connected
to other alarms in the house, and to telephones.
 Electronic surveillance which gives alarm when the person leaves the bed or
the house
 Global Positioning System (GPS), which can be used for out-door activities in
order not to get lost
 Homepage where activities are registered, and where the calendar can be
booked, so the person with dementia gets help to remember dates.
 Mattress with electric heating to give warmth and comfort in the bed
 Medicine alarm for having the correct medicine the right time and in the right
amount
 Multimedia programme as a supplement to other activities
 Red toilet seat and other adaptations in the bathroom for keeping up personal
activities
 Safety telephone with an alarm button, which gives security
 Sign on the dishwasher that tells if it has to be filled or emptied
 Smoke detector to avoid fire
 Speaking watch that gives messages about what to remember (contain up to 40
messages each lasting 10 seconds) or just to tell the time, when you cannot
understand the clock anymore
 Special automatically calendar “night and day calendar” showing day, date,
time and also morning, day, evening or night on a screen which is always
illuminated (perpetual calendar)
Special spoon, special china and special cup and good contrast colours between the
china and the tablecloth
 Telephone with coded numbers and photos of the relatives. Pressing one
button makes connection to the person on the photo.
Case stories. Three examples
Managing going out alone
Mr. Olsen is 62 years old and he was diagnosed with Alzheimer’s disease one year
ago. Mr. Olsen used to be an active sportsman, and he is still strong and fit. He often
rides his bike, and goes for outdoor walking every day. The most important to him and
his wife is that he still can move around on his own, and that they both feel safe about
it.
One day, walking his evening tour, Mr. Olsen got lost. This was a frightening
experience. Both Mr. Olsen and his wife got very anxious after this incident.
The coordinator of dementia care in the municipality recommended Mr. Olsen to
carry a GPS. Now, he carries the GPS all the time. If Mr. Olsen do not return home to
the time he said, his wife could call the emergency central and get information about
where he is, and go and collect him.
The GPS has an alarm button. If Mr. Olsen doesn’t know where to go or panic, he
may push a big red button on the GPS. A signal is sent to the emergency central that
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call his wife or another family member. The GPS also serves as a hands free telephone,
that allow family members to call him and ask how he is, and if everything is OK.
Mr. Olsen finds the GPS to be a beneficial aid for him. It reminds him of “the
pager” he used to wear in his job some years ago. The Olsen family is happy for the
GPS, because they know they will get a message where the husband and dad is, if he
doesn’t return as he usually does. They all feel safe because of the GPS.
Managing appointments
Mrs. Hansen lives in a rural area in Norway. She had stopped to show up at her
doctors’ appointments, and forgot about appointments with family members. The home
nurse knew the electronic calendar, and helped Mrs. Hansen to apply for one. The
calendar was put on a central spot home at Mrs. Hansen, - on a shelf that she had to
pass several times a day.
A written note is attached to the calendar telling what the appointments are for the
week. When Mrs. Hansen calls her family and asks for what her appointments are, they
remind her to look at the note on the calendar. ”Look at the calendar, mum!”
This strategy of reminding her on using the calendar, has helped her to recognise
the calendar, and to use it actively. She keeps her appointments now.
Support from assistive devices in different stages during the progress of dementia.
John is 59 years old, he is married to Grace. He had the diagnosis of Alzheimer’s
disease some years before the first technical devices were assigned to him. When John
got the diagnosis he stopped working. This account covers 2½ years. When the first
devices were assigned his MMSE was 24 and 2½ years later it was 13.
The first device John had was an electronic calendar so he could know what day it
was. He used to ask Grace all the time, but with the electronic calendar he
independently knew what day it was without asking Grace. He used the electronic
calendar with success for ½ year.
Simultaneously John got a speaking watch, which he still used after 2½ years. The
indication for giving him that device was his problems with reading an ordinary
analogue watch as well as a digital watch. Through the speaking watch he got support
in his understanding of time in the beginning. Later he didn’t understand the time, but
even then the watch had a social function. Even when he could not read the time or
understand the dimension time, the watch gave him a feeling of being competent.
Right from the beginning John got an electronic surveillance on the front door. The
problem was that he often forgot to lock the front door when he left the home when
Grace was at work. This made Grace feel insecure. The surveillance was adjusted to
warn Grace on her Mobil phone if the door was left open. Then she could call John and
remind him to close and lock the door. If Grace was unable to answer the call it was
directed to other person who knew about the problem and likewise could guide John.
After 1½ year John got at electronic surveillance to tell if he woke up at night and
started to move out of bed. This device alarmed Grace when she did not hear him get
up and she could prevent problems. At this stage he was not able to find the toilet
without help.
After 2 years he got a red toilet seat. The indication was that it was difficult for
him to know where the toilet seat was – and the red seat became a great help. Before
the need of the coloured seat was identified different support handles were tried out
without success.
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Other adjustments were made in the bathroom to support his bath and he also had a
mattress with electric heating in because he often was cold in bed even if he had a lot of
clothes on. The mattress helped him to calm down and to sleep better.
Effect and benefit of the assistive devices
The interviews illustrate in many ways, which benefit the assistive devices give
and which effect they have on the daily life according to the persons with dementia, the
family and caregivers. These benefits and effects are here presented in 6 groups
concerning:
Social contact, ex:
 Use the telephone independently to contact family and friends
 Assistive Technology establishes fellowship among the residents
 The device gives something to talk about together with family and friends
Safety and security, ex:
 Greater confidence when the person with dementia is alone at home
 The assistive device prevents mischief and injuries
 Feeling of being safe and in control of the daily life
Quality in care-activities and in getting helps, ex:
 The user gets quicker and more relevant help
 Gives a feeling of freedom when personal surveillance from other persons is
not necessary
 The advices enhance the care groups possibilities to concentrate on different
tasks with out disturbances and give better care and work environment
Happiness and activity, ex:
 The assistive device makes the user active, he/she talks and sings more
 The person with dementia gets positive experiences and feel greater selfconfidence
 The device minimises conflicts and creates fellowship in the family
Daily living, ex:
 The normal behaviour and independence are prolonged
 The devices prevent problems
 The persons with dementia get the right medicine at the right time and in the
right quantity
 The assistive device gives control and understanding of the daily activities
 Assistive technology enhances a more dignified life with the cognitive
impairments.
Relief, ex:
 Use of the assistive devices give relief for the family from uneasiness and
workload
 The technology opens possibilities for going on working and having more
spare time, which promotes health
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Guide for service delivery to persons with dementia (fragmentary draft)
The research data show how important it is that the responsible person for the
service delivery of the assistive devices to persons suffering from dementia has a high
theoretical and practical competence about assistive technology, dementia and the daily
living of the families, and the professional must always have information about the
newest development in the field of assistive technology. Further more it has to be
highlighted that sufficient time for the analysis and the service delivery process is
crucial for effective and efficient results, which strengthen the quality of life for the
family.
Many families asked for more information about cognitive assistive devices, which
for many of them were totally unknown. It was proposed that at the time of getting the
diagnosis a ”start parcels” about assistive technology and it’s possibilities should be
delivered to the actual family.
In the following are mentioned some basic elements, which a service delivery
process to persons with dementia according to the analysis of the interviews must
comprise. A guide and the organisation of the service institution must take into account
these aspects, which are not presented in a prioritised order:

Information about the actual assistive device must be given both in verbal and
written form and in the relevant amount, level and course of time in harmony
with the actual situation of the family and the person with dementia.

Follow along and follow up together with an open eye for information and
support are fundamental aspects for efficient delivery of assistive devices in
the area of cognitive handicaps.

Establishing of a mutual and confident contact between the professional and
the family is necessary to get knowledge about all the emotional aspects,
which is needed to acknowledge the problems of the family

The Assistive devices must be introduced early, which means in the very first
phases of the disease

The Assistive devices must be delivered quickly, because the needs might
change quickly

The service deliver professional must act on the unique needs of the family
and not what she herself think is important

It is important to have an on going dialog with the family to get a close
relationship, which is important for getting the often very private information,
which is necessary to give the family relevant and qualified help at the right
time and in the right way

The person with dementia must take active part in the process of getting the
right assistive devices in as great extent as possible
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
Open questions must be used: Is this a good solution? Do you think that this
might help? Because each person is unique and need unique solutions and
concrete recommendations might hinder and blur the family’s own thoughts
and wishes.

Do not introduce many assistive devices at one time. Start with the ones that
the family finds most important.

Let the process go on slowly in the pace that suits the family.

Visit always the family in their home, and introduce and give the training in
using the assistive devices in the normal and authentic surroundings and
situations
Conclusions
The analysis of the case stories accentuates that assistive technology that supports
cognitive functions can help people with dementia to go on with their daily activities,
social life and participation. The assistive devices support independence, feeling safe
and secure and further more improve the help and care, strengthen the user’s activity
and social contact. The assistive devices can relieve family and caregivers and they can
contribute to joy and increased self esteem.
But the study also showed that the assistive devices that support cognitive
impairment are not commonly known among professionals and other caregivers or the
persons with dementia themselves. Sometimes it is a coincidence that the user or the
family got knowledge about the possibilities given assistive devices. Often they had to
find the information themselves and to pay for the devices. The families asked for more
information about assistive technology that supports cognitive functions, and how the
devices can be a help for them in their daily life.
Concerning the process of assessing the need for and implementation of assistive
technology that support cognitive functions then the study showed that very often only
isolated problems were solved. Therefore the families did not get possibility to manage
all their problems which minimises their resources and their self confidence and daily
activity.
The conclusion therefore is that in the area of dementia knowledge about assistive
technology, that supports cognitive functions, is needed. Further more methods and
systematic processes in the service delivery of assistive technology in the area of
dementia is demanded.
The results also put a light on how important it is that professionals from the
service delivery of assistive technology create a trusting mutual contact to the person
with dementia and her/his family. The professional must have sufficient of time to
perform a total analysis of the family’s situation and to introduce the assistive devices
in harmony with the speed and wishes of the family. The cases show that the very same
assistive device are used different from person to person and that it has different effects
for different persons.
A frequent and regular contact and visits at home as well as a systematically
follow up are necessary, because the level of functions in daily living can change
quickly for persons with dementia. Perhaps some assistive devices have to be removed
because they have become a factor of stress and perhaps other assistive devices are to
be introduced in order to tailoring the changed situation of the family.
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A thorough and targeted information and instruction both verbal and written is
necessary. The information must be given both to the user, the family and to the private
and social helpers. This issue is pinpointed many times in the cases.
Because the social workers often are in lack of time they chose ”easy solutions”, as
a professional says in one of the cases in order to explain insufficient assessment and
following up of the need and use of assistive devices for cognitive support. These
conditions can only be improved when politicians and managers in the public service
acknowledge cognitive impairments like they acknowledge physical impairments.
Conclusion short
 Assistive technology which supports cognitive functions can help people with
dementia to go on with their daily activities, social life and participation.
 Assistive devices that support cognitive functions are not commonly known
among users and professionals in the area. Information both specific and
generally is needed.
 Often are just the acute problem solved. An analysis of the total situation of
the person with dementia and their life situation is needed.
 Knowledge and methods for analysis as well as implementation of the
assistive devices are necessary and also a systematically way to help people
with cognitive problems is needed.
 In the process of analysing, assessing, implementation and following up of the
assistive devices for people with dementia it is important that:
 There is good time (time enough)
 A trusting contact to the family must be established
 Ongoing visits and following up at the family’s home are
important
 Introducing the assistive devices, when the family feels the
need (and not when the professional finds it necessary!)
 Information, instruction and training in using the assistive
devices to the family and all helpers are important
New interfaces between formal and informal elderly care in the area of dementia is
needed: an interface where the professionals focus on independence, activity and
participation combined of course with medical caring.
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