Memory aids and techniques - December 2004
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December 2004
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Memory aids and techniques
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best choice • best practice www.mhra.gov.uk nww.medical-devices.nhs.uk
About MHRA evaluation reports What you can expect The Device Evaluation Service (DES) aims to provide independent and objective evaluations of medical devices available on the UK market. Specialist centres, mainly in NHS Trusts, do the evaluations under long term contract to, and in accordance with protocols approved by, the Medicines and Healthcare products Regulatory Agency (MHRA). The evaluations are usually of a unit supplied by the manufacturer. We would expect this unit to be representative of the product on the market but cannot guarantee this. Prospective purchasers should satisfy themselves with respect to any modifications that might be made to the product type after MHRA’s evaluation. The reports are intended to supplement, not replace, information already available to prospective purchasers. The MHRA DES does not have access to any information held by the Agency in its capacity as the Competent Authority for the UK, apart from any information already in the public domain. The reports will contain data given by the manufacturer on the regulatory status of their devices but, apart from this, they are not an indicator of the regulatory status of a product. Occasionally, DES refers products to the regulatory arm of the MHRA for considerations of breaches of the legislation governing medical devices. DES plays no further part in any regulatory investigation that ensues and does not have advance notification of any regulatory action that may follow. How to obtain MHRA reports To order evaluation reports, a copy of the publications catalogue or to sign up for our e-mail alert service contact: MHRA Orders Department Room 1207 Hannibal House Elephant & Castle London SE1 6TQ Tel: 020 7972 8181 Fax: 020 7972 8105 e-mail: des@mhra.gsi.gov.uk Visit www.mhra.gov.uk for a comprehensive list of publications, details of forthcoming evaluations, services and contacts. Colour reports Full colour versions of all reports published after 2002 are available from the NHSnet at: nww.medical-devices.nhs.uk
Memory aids and
techniques
Sue Brown1 Lorraine Pinnington2 Chris Ward2
(1)
Assistive Technology Evaluation Centre (ATEC) Derby
Derby Hospitals NHS Foundation Trust
Derby City General Hospital
Uttoxeter Road Derby
DE22 3NE UK
Tel/Fax: 01332 785627
e-mail: mail@derbyatec.co.uk
(2)
Division of Rehabilitation and Ageing
University of Nottingham
For more information on ATEC Derby visit www.derbyatec.co.uk
© Crown Copyright 2005
Apart from any fair dealing for the purposes of research or private study, or criticism, or review,
as permitted under the Copyright, Designs & Patents Act, 1998, this publication may only be
reproduced, stored, or transmitted in any form or by any means with the prior permission, in
writing, of the Controller of Her Majesty’s Stationery Office (HMSO).
Information on reproduction outside these terms can be found on the HMSO website
(www.hmso.gov.uk) or e-mail: hmsolicensing@cabinet-office.x.gsi.gov.uk.
The MHRA is an executive agency of the Department of Health.
ISBN 1 184182 928 5
Contents
Summary........................................................................................................... 1
Introduction ...................................................................................................... 2
Aims................................................................................................................ 2
Definition........................................................................................................... 3
Memory aids ................................................................................................... 3
Methods............................................................................................................. 4
Participant details ........................................................................................... 4
Data collection ................................................................................................ 4
Findings ............................................................................................................ 6
Current memory aids ...................................................................................... 6
Timers ......................................................................................................... 6
Telephones and electronic devices ............................................................. 7
Medication management products ............................................................ 12
Note based memory aids .......................................................................... 14
Carers ....................................................................................................... 17
Strategies .................................................................................................. 18
Memory aids used previously ....................................................................... 20
Memory aids of interest to participants ......................................................... 20
Medication regime ........................................................................................ 22
Product reviews ............................................................................................ 26
Professional and carer comments ................................................................ 29
Conclusions.................................................................................................... 31
References ...................................................................................................... 33
Appendix 1 - Questionnaires......................................................................... 34
Appendix 2 - Telephones and electronic devices........................................ 45
Appendix 3 - Products and services............................................................. 51
Appendix 4 - Organisations........................................................................... 54
Acknowledgements........................................................................................ 55
Summary
The purpose of this study was to identify and evaluate the devices and
strategies used by individuals and their carers to manage memory impairment.
Difficulties with memory can occur as a consequence of injury or illness which
damages the structure or function of the brain.
Due to the nature of their problem, participants involved in this study were not
asked to try out unfamiliar equipment, but were interviewed about their existing
devices and strategies. They were asked to describe the benefits and
limitations of the methods they used and feedback from carers was recorded.
A search was undertaken to identify all the products marketed for people with
memory impairment and these devices were reviewed to identify their features
and functions and ease of availability. Only one person used a memory aid that
was purpose-designed. There were several aids which were common to most
users, however, some features identified as a benefit by one person were seen
to be a disadvantage by others. Participants used specific aids or locations as
‘hubs’ which were focal points for storing and collecting information, they often
had more than one ‘hub’.
The main findings were that:
· support from carers was fundamental to the management of daily
activities
· medication was a specific area in which users relied upon other people in
order to comply with their prescribed regime
· only one participant used a purpose designed memory aid
· there was limited knowledge of memory aids available
· the training available for users and carers in the use of aids and
strategies was thought to be inadequate
· there was lack of opportunity for reassessment and long term follow-up
This report presents information not only about purpose designed memory aids
but also other methods commonly used when memory is impaired.
The aims are:
· to provide information about the availability of products on the market
and in the process of being developed
MHRA 04151: Memory aids and techniques
· to describe the advantages, limitations and potential applications of the
devices and strategies used
1Introduction
Rehabilitation programmes for people with memory problems aim to utilise
residual skills to enable the individual to live as independently as possible and
this process can often be assisted through the use of strategies and external
memory aids.
People of all ages experience memory impairment. It is estimated that 21,000
people suffer moderate to severe head injuries in the United Kingdom per year.
The 15 to 29 age group is at greatest risk from head injuries [1]. As the number
of older people in the population increase the prevalence of dementia increases
and currently affects over 750,000 people in the UK [2]. Other progressive
conditions may predispose people to memory impairment including Multiple
Sclerosis (MS) and Parkinsons Disease (PD). Management of memory
impairment to facilitate independence would reduce the need for long-term
support from relatives, health and social care services. In line with the aims of
the National Service Frameworks (NSF) for Older People [3] and people with
Long Term Conditions, use of memory aids can promote independence and
assist in the health and well being of the individual.
For example memory aids can help people to:
· comply with medication regimes
· maintain a healthy diet
· keep appointments
· maintain social activities
This report provides a summary of information about the memory aids and
strategies used by people with acquired memory impairment and how they use
them. It is intended as a guide, to assist clinicians, purchasers and users of
memory aids and their carers when choosing products or devising strategies
that will match the needs, abilities and environment of the user most effectively.
Aims
This report aims to:
· describe the aids and strategies used by participants with acquired
memory impairments to manage their day to day activities culminating
MHRA 04151: Memory aids and techniques
with one common activity namely management of medication
· summarise the positive and negative features of the memory aids and
strategies identified
· provide information about the range of products designed as memory
aids and give details of their features and functions and the skills
required for successful operation
2Definition
Memory aids
The term ‘memory aid’ is used in this report to refer to a device or strategy that
is used to store information or to alert the user to an event or an issue they
might otherwise forget. Individuals with memory problems caused by illness or
injury use these devices and strategies to maintain or regain levels of
independence. Memory aids range from generic techniques such as simple
pen and paper notes to more ‘high tech’ electronic devices. Purpose designed
memory aids are often intended to deal with a specific task and should be
chosen with care to ensure they are appropriate for the problem being
addressed [4]. In contrast, generic aids that are used, but not specifically
designed, as memory aids may be more flexible and adaptable.
There are few aids on the market designed for people with acquired memory
problems. A pill ‘dispenser’ is one example of a task specific aid, by contrast, a
pager system is more flexible and can assist with many activities. Products
such as calendars, diaries and mobile telephones are tools that are used by
people with memory impairment to manage everyday activities. Strategies are
also used to aid memory either on their own or as a tactic to ensure that other
memory aids are used. The cognitive, sensory and physical abilities of the
user, their needs and the environment in which the aid will be used will
determine the choice of memory aids. Environmental considerations are
particularly important for people with memory impairments, as new skills need
to be practised in the environment where they will be used [5].
MHRA 04151: Memory aids and techniques
3Methods
Participant details
Participants were recruited directly through the ATEC volunteer database,
support groups and advertising in relevant publications. Professionals from
health and social care were asked to inform clients and patients about the
project and gain permission from those interested to forward contact details to
ATEC.
Volunteers recruited to the project met the following criteria, they:
· were over 18 years of age
· had memory impairment due to illness or injury
· were using memory aids without which they would be unable to manage
their day to day activities
· were able to understand the purpose of the study and were capable of
providing informed written consent
A total of 11 people participated in the study (see table 1). The views of five
carers and three professionals who currently or previously worked with memory
aid users were also collected.
Table 1. Details of memory aid users
Gender Age
(Years) Living alone Working
Male Female Mean Range
All conditions 5 6 50.7 19-82 5 4 (part time)
(n=11)
Head injury (n=7) 4 3 36.6 19-60 2 4 (part time)
Progressive 1 3 75.5 59-82 3 0
conditions (n=4)
Data collection
Semi structured interviews (see appendix 1) took place in the participants own
home whenever possible. Two members of the research team attended the
interviews and in some instances carers were also present. The interviews
MHRA 04151: Memory aids and techniques
were recorded on audiotape with the consent of the participants and carers and
transcribed verbatim. During the interview, participants were asked to describe
the methods they used to manage their medication, if taken. Details about this
activity were recorded, because it is clinically important and since taking
medication is a relatively common activity, this would allow some comparisons
to be made between participants. A total of ten participants discussed the
methods they used to manage their medication.
Three researchers were asked to theme the same transcription to validate
interpretation of the data. ‘QSR N6’, computer software for qualitative research,
was used to organise the data prior to analysis. Initially, interview records were
analysed to identify the range of products and strategies used by the
interviewees as memory aids and the benefits or problems they encountered
4Methods
_______________________________________________________________
when using them. Ten of the eleven participants had taken medication and they
were asked to describe how they managed this task in order to provide
comparable information from a common daily activity requiring memory.
Professionals who had identified users of memory aids were asked to complete
a postal questionnaire (see appendix 1). Carers not present at the interview but
identified by the participants were subsequently contacted and asked to
complete a questionnaire (see appendix 1). These observations and opinions
are reported in the ‘professionals and carer comments’ section.
MHRA 04151: Memory aids and techniques
5Findings
Current memory aids
This section concerns cueing devices, in which a cue such as an alarm bell
gives a signal for action without providing any further information. The cue may
be a sound, vibration or a visual trigger. Used as an aid to memory, a cue
needs to be associated with a task, a time of day or a source of information.
Cueing aids were used by ten participants; some people used more than one
cueing method (see table 2).
Table 2. Methods of cueing used by participants
Device/Strategy Problems identified Positive comments
Alarm clock • the audible prompt does not • easy to operate
Oven timer indicate what the alert is for • fixed location
Egg timer • only useful for a single task • portable
• can be used in
conjunction with information
aids
• discreet
Personal Computer • fixed location • PDA and computer will
• systems can crash update one another
• complex to operate • can give both a prompt
• high cost and information
• inappropriate software • email useful
Personal Digital • portable • PDA and computer will
Assistant (PDA) • easily lost update one another
• easily damaged – losing data • can give both a prompt
• high cost and information
• complex to operate • portable
• discreet
Mobile telephone • complex to operate • portable
• easily lost • discreet
• higher price for specific functions • gives both a prompt and
information
People • dependent on other people • reassures carers
• reliable and flexible
• gives both a prompt and
information
Location • if item is not visible it is forgotten • seeing an object reminds
MHRA 04151: Memory aids and techniques
the user to act
• familiar
Timers
Watches, clocks and various kitchen timers were used to provide a visual or
auditory prompt. Portable and fixed kitchen timers, such as oven timers, were
used by participants and by care staff who assisted with their meals. None of
the timers that were used by participants provided information and they were
only successful if the cue was associated with the timing of a task, such as
removing food from the oven or taking medication:
6Findings
_______________________________________________________________
“I have used the egg timer for different things, but the problem with
that is that they say oh you know if you're going to do something set
the egg timer and then it'll remind you to go and do it. Sometimes,
the egg timer runs out and you sit there and you think well what's
that just gone off for? You know I don't have a set task that it's
associated with so that has really dropped off quite a lot.”
Users commented that cueing devices alone were more likely to be successful if
they were associated with one response e.g. check the time, read diary, read
checklist, take medication. All participants had adopted products they already
owned to function as a memory aid. To remember to take medication for
example an alarm clock was used in the house and a wristwatch if outside the
home. Fixed devices were easy to find, but were only of use in one location.
Oven timers are an example of fixed devices and these were generally used to
assist with one activity only, namely, cooking. Portable products could be
carried with the person but participants reported that they were at risk of being
lost or forgotten.
Telephones and electronic devices
Nine participants used memory aids that were powered by battery or mains
electricity (see table 3).
Some electronic devices such as mobile telephones, communicators and
Personal Digital Assistants (PDA) were able to provide an alert and information.
They often proved difficult to use, however, as participants found the operating
instructions were too complicated to recall or set. Alarm functions were used to
remind them to check their diary or to read a message displayed on the screen,
although it was more common for people to set the alarm without writing a
message to accompany it
Functions and features:
· multiple alarms options; repeat alarms; adjustable volume; ‘snooze’
button
· audible or tactile feedback to user when buttons pressed
MHRA 04151: Memory aids and techniques
· small enough to carry if necessary
Considerations for the user:
· can they read, hear, feel and recognise the alert?
· do they link the alert to an activity if no information is given?
· do they have the dexterity required to operate the device?
7Findings
_______________________________________________________________
Table 3. Electronic devices used by participants
Devices used Problems identified by Positive comments from
users users
Telephone – landline • ring tones distracting • easy to make contact
(appendix 2) • location fixed to a socket with people
point • familiar
• easy to use
• cordless
Telephone – mobile/cell • easily lost/stolen/dropped • discreet
(appendix 2) • high cost • wide choice of handsets
• complicated to use and networks
• cannot input information • various alarm settings
when using phone available
• stores and retrieves
information
• low cost
• portable
Communicator • easily lost/stolen/dropped • programmable alerting
-combined mobile telephone • cost and information
and electronic organiser • too many functions • various alarm settings
(appendix 2) • cannot input information available
when using phone • stores and retrieves
• system can ‘crash’ information
• compatibility with other • portable
electronic devices
Personal • fixed location • can be programmed to
Computer • complicated to use open up on relevant screen
• compatibility with other • various alarm settings
electronic devices • stores and retrieves
• system can ‘crash’ information
• software can be disabled • can run a wide variety of
by computer viruses software packages
• high cost
Email • ensures information is
read and stored
• eliminates the need to
make and keep written
notes
Personal • easily lost/damaged • automatic update with
Digital Assistant • complicated to use computer
• compatibility with other • portable
electronic devices • can run a variety of
MHRA 04151: Memory aids and techniques
• high cost software including Global
Positioning Systems
(GPS)
Clock/calendar • too much information on • automatic change of date
display screen and time
• can be moved or hidden • fixed location
if not fixed to the wall • portable
Domestic • will switch off at time
appliances indicated and give visual
and/or audible signals
8Findings
___________________________________________________________
All the participants owned a telephone and eight people owned a mobile
telephone. One participant used an electronic communication aid which
incorporated both mobile telephone and personal organiser capabilities. This
dual function device was thought to be beneficial as it was more convenient to
carry one item than two. However, due to the multi media functions available
on an electronic organiser, e.g. internet and email access, the price of these
devices is high. Three participants used personal computers and consulted
them each day. E-mail enabled them to exchange messages with other people
which they could store or print and email was checked routinely. One person
used Lotus software rather than Microsoft software as it had a colour coded
diary. The colour of individual sections was changed to provide feedback about
the progress or completion of tasks changing the colour of the sections
depending on whether the task had been ‘signed off’ or not
“..I mean today is in green the one tomorrow is in blue but if I've
forgotten to do it I haven't perhaps gone to my computer for two days
it goes red. ……So if all the colours change it gives me that vital
nudge nudge you've forgotten to do something it must have been
important you put it on here if its turned red why didn't you do it or
have you done it.”
Four participants using electronic equipment were unable to use it to its full
advantage and there were usually many more functions available than were
needed. Three people had purchased products that did not meet their needs
e.g. with wrong functions, limited functions or the wrong design which was not
apparent until they began to use them. One computer gave an automatic
message which had to be acknowledged before the user could continue. Email
was popular as it prompted the user by indicating they had messages to read.
Landline
One participant found the ringing tone of landline telephones distracting
“….when the phone rings, for example, phones are the
bane of my life. When the phone rings, it actually empties my brain.
The sense of urgency that you have that I must answer the phone is
enough to use up all the available operating space in my brain and
MHRA 04151: Memory aids and techniques
absolutely anything that was in my brain at that moment is lost
completely.”
Cordless telephones proved very useful for one participant whose main memory
aid ‘hub’ was located in a fixed position. He could take the telephone with him if
he needed information from a wallboard
“….a cordless phone so that I can just wander into the kitchen and jot
something down on the whiteboard…..”
This was also useful to a participant with physical impairment, as he could keep
the handset nearby.
9Findings
_______________________________________________________________
Mobile telephones
Eight participants owned mobile telephones, but only four people used the
alarm function. Those who didn’t use the alarm function for cueing commented
that their telephone was too complicated to allow them to use this feature or that
the model they owned did not incorporate the function they required. One
person had a new handset which was not as versatile as the old one i.e. the
alarm could only be set for a single alert; there was no ‘snooze’ function.
Mobile telephones were used primarily as a means of communication for safety
and backup reminders. As memory aids, they were used as cueing devices,
usually to alert the user of an event or specified time and could provide
information if required and programmed accordingly. People who had not used
mobile telephones before the onset of their memory impairment, thought they
were complicated and difficult to operate. Two people used them as
communication aids only and even though names and telephone numbers were
stored in the memory, they were not able to retrieve this information or dial a
number using the short-cut keys. Instead, they referred to written records to
retrieve information and dialled the number manually, using the key pad.
However, half of the participants who used mobile telephones thought they
were their most useful memory aid and acknowledged that they were discreet
and versatile devices. There were issues relating to changing telephones as
the information stored was not necessarily transferred to the new one. One
user found that a more recent model did not have the repeat alarm function he
used on a previous ‘mobile’
“……….its got a bigger memory 'cos its more up to date and more up
to date phones have larger memories and you can file all sorts in
them and it doesn't sort of delete it.”
Everyone was aware of the risk of losing a mobile telephone which was a
reason given for using additional memory aids for back up and not buying an
expensive model.
Communicator
MHRA 04151: Memory aids and techniques
One person owned a communicator; these are mobile phones with an electronic
organiser. This was a versatile product and meant that the user had only one
device to carry instead of two. However it was expensive and there were
compatibility problems backing up information to a computer so there was a
danger of losing the contents of the memory. This participant also lost data
when the device was dropped and unable to work as a consequence.
10Findings
_______________________________________________________________
Computer
These were used with additional devices such as a PDA and specialized
software. When connected the computer and the PDA automatically update
their contents, making coordination of memory aids more reliable. Once set up
computers were used to store information, provide alerts and print
copies of checklists, schedules, menus etc. Two people used the computer as
a ‘hub’ and had developed systems to manage diaries, finances and tasks
which they could check at any time. E-mail was very popular as all the
information could be received, printed and filed within one system. Regular
updating of hardware and software by manufacturers created compatibility
issues. One participant had experienced loss of their stored information due to
a computer system crash. Participants found that they were unable to function
with any degree of independence when their systems failed. File back up and
use of virus checkers and firewalls was recognised to be very important but
occasionally forgotten.
Personal Digital Assistant (PDA)
Using a PDA as a diary ensured that any information entered in either the main
computer or the PDA would automatically update the system when they were
connected. The device also had global positioning software which was used to
give directions when walking or driving to a specified destination. Orientation
was a problem identified by two other participants.
Clock calendar
One participant had an electronic clock calendar which also included the
temperature. It had large figures and changed date and time automatically.
Located opposite her usual chair it was in a position where she would see it
regularly. Knowing the day of the week and time of day helped her to manage
more independently enabling her to attend appointments, take her medication
and pay the milkman.
Domestic appliances
Forgetting that things were cooking and the risk of fire was an issue for more
than half the participants. Timers on cookers were used to alert people when
their food was ready. Products with automatic timers such as microwave ovens
MHRA 04151: Memory aids and techniques
and central heating systems enabled participants to be more independent and
safer in their home environment. Microwave ovens were programmed to switch
off the power and sounded an alarm at the end of the cooking period. Heating
systems connected to an automatic timer ensured the users environment was
maintained at an appropriate temperature.
Key points
Success with electronic devices depended upon:
· the use of appropriate software
· correct set up of the system
· protection from loss of data
· adequate training of the trainer and the user
· re-assessment of the needs of the user
11Findings
_______________________________________________________________
Success with cueing devices required:
· timing the cue as close as possible to the action required
· using an active reminder e.g. a sound or vibration
· that the reminder should be specific to an action
The benefits gained from electronic devices were:
· reliability due to automatic update and coordination of information
· safety due to timers
· flexibility being adaptable to various tasks
These benefits were related to:
· previous experience of users with the device
· training given to use the device
· setting up and regularly reviewing the system
· cost determining the products and the functions available to the individual
Routines should include:
· reminders to charge or replace batteries
· back up of electronic files
· measures to protect the equipment and data from loss or corruption
Medication management products
Pill dispensers are partitioned boxes which hold doses of medication
(see figure 1). They are designed to enable medication to be sorted into doses
so that the person taking them can identify the time the tablets should be taken
and locate the dose needed at that time. Once the tablets have been taken the
empty section confirms that the tablets for that time had been removed.
MHRA 04151: Memory aids and techniques
Figure 1. Seven day modular pill dispenser
Only one participant used this type of memory aid (see table 4).
Table 4. Medication management products used by participants
Used by participants Problems identified by Positive comments from
users users
Seven day pill dispenser • No alert, user needed other • Gave user and carers
aids to ensure medication feedback – empty cell
taken • No need to organise
tablets every day
12Findings
_______________________________________________________________
One person used a pill ‘dispenser’ and kept it in a specific location. He was
reminded throughout the day to take medication by carers, a checklist and a
white board but no alerting device was used. Details of the medication and
doses were kept in the wallet holding the boxes. A note written in a specific
location on the whiteboard reminded the user to refill the pill organiser once a
week. Other participants had developed other methods of managing their
medication.
Key points
Issues to consider when choosing a pill ‘dispenser’:
· size and number of tablets to be organised
· number of doses to be taken per day
· time of day to be taken
· requirement for pills to be carried away from home
· labels for people with visual or cognitive impairment
· design and size of lids if user has manual dexterity problems
· an alarm if the user needs to be alerted that a dose is due
MHRA 04151: Memory aids and techniques
13Findings
_______________________________________________________________
Note based memory aids
Notes are a method of storing information. Used as memory aids it may be the
person with memory impairment who makes notes for themselves or other
people who write down information for the memory aid user (see table 5).
Table 5. Note based memory aids used by participants
Device Problems identified by Positive comments from
users users
Notes/List • easily lost or misplaced • portable
• no alert • fixed location
• stigma – not discreet if • flexible task planning
stuck around the house • ‘ticking off’ – gives feedback
• routine reminder
Adhesive notes • drop off • fix anywhere
• forget where they are • eye catching colours
• one off
• temporary
Diary • coordination • portable
• forget to write in • discreet
• forget to look at it • choose the size to suit the
• no alert function
• lack of specific space • instant input and access
e.g. address book • cost
• tick list can be written in it
Calendar/planner • not enough space • reference point – ‘hub’
• forget to look at it • plan ahead
• no alert • multi users
• can be read regularly
• larger picture
• discreet
• no pages to turn
Computer printout • lost if computer crashes • instant paper copy of stored
and no backup available information
Pin board • fixed location • fixed location
• no alert • reference point –‘hub’
White board • fixed location • can display information long
• no alert or short term
• fixed location
• reference point –‘hub’
MHRA 04151: Memory aids and techniques
All participants used note based memory aids as part of their memory
management regime.
Notes, ‘post-its’ and lists
The success of written notes as memory aids relied upon a well-organised
system. Some people would store them at their ‘hub’ for instance pinned or
stuck to a board, filed in their diary or stuck to the computer. Notebooks were
also used, some with removable pages giving them both a fixed location and
portability for example a shopping list, once completed could be torn out and
taken to the shop. Carers also used notes for example to remind someone to
take their medication by attaching them to the relevant item. It was suggested
14Findings
_______________________________________________________________
that ‘poor quality’ adhesive notes were more likely to fail, and like other notes
could be overlooked if they moved or were concealed. However most people
found adhesive notes useful at some stage in their rehabilitation
“….that's fine until they fall off and I have missed appointments
because they've fallen off.”
“…I've progressed, before I couldn't have done without the notelets.
The notelets were there to help me achieve a routine whereas now
I've got into that routine without the notelets before things were just
higgledy piggledy in my mind.”
It was pointed out that people who used their mobile telephone to store
information would need to write notes when given information over the
telephone as they could not input information and talk on the ‘phone at the
same time.
One participant felt that writing a note gave people a false sense of security and
there was no guarantee that they would remember to refer to it.
Lists were used to plan activities for the day, provide step-by-step procedures to
follow and as tick lists
“……every morning or every day I have a plan of what I have when I
have it……'cos I can’t remember what I have eaten and what I
haven't eaten …..so I'd either eat and eat and eat or I wouldn't eat at
all.”
“…very often I do forget to have a drink that's one of the things it
might sound silly but I do forget to have a drink and I have to write
drink down tea or coffee or what ever and I do forget that.”
Diaries and calendars
These were products which participants used before their memory impairment
and adapted to their memory management system. Nine out of eleven
participants used paper diaries and some people also used electronic diaries.
MHRA 04151: Memory aids and techniques
The paper versions were used as notebook, journal, birthday book and address
book. Participants who used a diary to record appointments and daily activities
had developed a routine in which they:
· referred to it on a regular basis
· co-ordinated it with other aids
15Findings
_______________________________________________________________
“….the head injury team got me to writing all down on a daily planner
but that became quite depressive and quite a far more like a chore of
writing it down and it just evolved really the diary did, started needing
to write it down for all the hospital appointments as time went on just
writing down the hospital appointment times and telephone numbers
and people I needed to contact its just slowly evolved into a much
more personal memory aid.”
“I used to have a diary but carrying the diary around I didn't always
remember to link it up with my PC and therefore I didn't always link
that up with my board and that's the biggest problem its linking
everything together….”
One person felt that there was insufficient space for notes and addresses in
most diaries but would not use a filofax type organiser as she considered it
more complex to manage than a diary.
Calendars were also used in both paper and electronic format; four people used
a wall calendar in conjunction with a diary. Choosing calendars and diaries
depended upon the space available for writing information. Diaries were
chosen in a size convenient to carry around and calendars with space to write
information against every day and additional space for general notes at the top
or bottom of the page were favoured. They were both used as ‘hubs’ and used
together provided a fixed reference point and a portable memory aid. As ‘hubs’
they were used as a communication system between memory aid users, carers
and family members
“…I've got arthritis in my thumbs and in the morning unless I've got to
sort of bring my thumbs up I fumble you know what I mean if I can
just look and there it is its easier for me rather than trying to turn
pages …………..”
“Yes there was a lot of frustration. The calendar I had started to use
on my you know doing it myself.”
Wall boards
MHRA 04151: Memory aids and techniques
These were fixed to the wall in a prominent place in the kitchen often used for
checklists and planners and acting as a ‘hub’. Additional information was also
attached there. White boards were split into sections with planners drawn on
them and spaces for jotting down notes and reminders. Boards were used for
information needed in the long and short-term. Remembering to refer to the
board was the key to their success
“…if you could get a whiteboard that beeps if they'll ever invent
something like that.”
16Findings
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Key points
· written notes were used by participants and carers
· strategies were used to ensure notes were read
· loose paper was at risk of being lost
· diaries and calendars were considered more discreet than wallboards
Carers
All participants had assistance from carers, friends, neighbours, health or social
services or other support workers. Carers provided reminders to the
participants to perform tasks such as taking medication
(see ‘medication regime’). Some participants needed assistance to ensure the
information between various memory aids was co-ordinated to enable them to
manage a routine successfully. In this study family members, friends,
neighbours and employees provided care and were involved with memory
management systems
“…take absolutely no notice of their carers because these are people
acting as carers I mean relatives members of the family who have no
idea what the problems are that the person is going to face
absolutely none at all.”
Carers included:
· partners living in the same house
· parents who called and visited daily
· children who visited daily
· children who visited weekly or less often but telephoned frequently and
helped to organise their parents activities
· neighbours who called in and did shopping
· work colleagues
Employees included individuals who were:
MHRA 04151: Memory aids and techniques
· part of a care management package calling in at specified times to set
up, or prompt user to take, medication doses
· visiting at regular intervals e.g. weekly to coordinate memory aids
· case manager to assess and review needs of client
· escorting participant on holiday
Half the respondents were prompted daily by a carer to take their medication.
Three people had help from carers to coordinate their system of aids.
Reminders for participants to perform tasks were given by carers using verbal
or written prompts.
17Findings
_______________________________________________________________
Key points
· a designated communication system should be identified and used by
everyone
· cueing devices promote users independence and respite for carers
Strategies
A strategy is a plan of action used to meet a goal. When it is used to aid
memory a strategy can be the memory aid itself or a method used to ensure
other memory aids are used (see table 6).
Table 6. Strategies used by participants
Strategies used by Problems identified by Positive comments from
participants users users
Location • object can be moved or • kept where it was unlikely the
hidden object would be missed
• varies with time of day/year • reference point –‘hub’
• has to be adopted by • visual cue
everyone in the environment
Routine • unplanned change is very • familiarity of the routine
disruptive • one task acts as a cue for
another one
Filing • can be covered or moved • personal to the users needs
‘Ticking off’ • forget to write a checklist • provides feedback to the user
and reference point for carers
• flexible as checklist can hold as
much information as needed
• can be used as a back up for
electronic devices
Location
All participants used location as a strategy, keeping objects or information
where they knew where to find them and would see them at an appropriate time
e.g. a visual cue at a location where a task had to be performed.
Locations for some things changed according to the time of day, week or year.
MHRA 04151: Memory aids and techniques
One participant kept her door keys in the lock during the day and in the
bedroom at night. In the winter one man kept his keys in his jacket pocket but
in the summer he didn’t wear a jacket and used another location. When people
were away from home they used a specific pocket or bag to carry their aids.
Mobile telephones were often taken out of pockets and forgotten because they
were too cumbersome to carry.
Location played a large part in medication compliance both for taking it and
remembering to order further prescriptions (see ‘medication regime’).
Participants emphasised the importance of there being a place for everything
not just memory aids and if objects were moved and not returned to their
specific location their system broke down as location was used as a visual cue.
At home everyone had ‘hubs’ usually with a memory aid they used frequently.
The ‘hub’ was a place to store and find information by using the memory aid
18Findings
_______________________________________________________________
e.g. calendar, computer, or leaving notes and filing nearby. A ‘hub’ was visited
as part of the daily routine to check on the activities for the day.
Routine
Routine combined with other aids and strategies was the basis for all
management systems. Different routines were used in different circumstances
for instance on a work day, non work day or a holiday. Checklists were used as
part of the routine for instance to perform a task or carry out self care activities.
Carers, family and friends were familiar with the participants’ routines and in
some cases had helped to plan the system being used. This shared knowledge
ensured that channels of communication were successful, memory aids were
kept in the correct location and if necessary carers could ensure that the system
was meeting the needs and abilities of the user.
Filing
Organising documents such as appointment letters and instruction books
enabled people to manage their paperwork. Over one third of participants used
a filing system for papers which they needed to refer to. Current papers were
kept accessible and when finished with they were filed or thrown away. Two
participants used alphabetic filing systems; one person had current documents
in her diary and one person kept three piles of documents according to type.
People reviewed these documents on a regular basis, usually weekly.
Ticking off
By ticking off tasks users were establishing feedback to ensure they had carried
out an activity on their ‘to do’ list. Ticking off items on a list was used by more
than a third of participants. One person used this strategy when it was not
possible to use a mobile telephone at work. ‘Tick off’ systems were also used
as a record when taking medication (see ’medication regime’).
Key points
Location was chosen to:
· provide visual cues
· fit the routine
MHRA 04151: Memory aids and techniques
· ensure access
this strategy depends on other people in the same environment putting things
back in the correct place.
Routine is vulnerable to unforeseen events which could make the system fail.
‘Ticking off’ provides feedback.
19Findings
_______________________________________________________________
Memory aids used previously
Participants were asked about memory aids which they had used in the past
and were no longer using. They were also asked why they had stopped using
that aid and whether they were using an alternative (see table 7).
Table 7. Change of aids and reason
Past aids used Reasons for giving up Alternative aids adopted
Diary • Problems coordinating • Hand held PC automatically
with other aids updates with computer
Day planner • Fixed position • Diary could be carried round
and new information entered
Egg timer • No link to task
Notes and lists • The system got out of • Diary - more organised
hand
Adhesive notes • User forgot where they • Wall board - fixed location
were
• Do not stick for long
People • Not needed to such an • More organised themselves
extent follow a routine
Wristwatch/ alarm clock • No longer takes
to take medication medication
One person chose the memory aid which suited her lifestyle better:
“I started off with my day planner because it was more I could see it
was a wider perspective all in one go whereas a diary you've got to
go turn the pages day by day whereas it was there on the day
planner right in front of me the whole week but its not always
accessible to take around with you and you can’t write other bits in
whereas the diary you can so something just had to give and it was
the day planner.”
Memory aids of interest to participants
Participants were also asked which products they would like to try or thought
MHRA 04151: Memory aids and techniques
might help them. They indicated that they were not aware of what was
available. One participant felt that a pill organiser would have been useful when
she was taking medication. Electronic memory aids were identified by four
participants. One computer user thought that a PDA would be helpful so that he
could use his data when he was away from home, although he was not very
confident to try a new device. A participant who carried a mobile phone and
diary thought that a palm pilot might be more useful but cumbersome to carry.
Electronic organisers were thought to be useful devices for use at work to
ensure that necessary reminders and information were available. Another
suggestion was for domestic systems with ‘fuzzy logic’, a sensory system which
can automatically switch on and adjust electronic devices to meet the needs of
the household.
20Findings
_______________________________________________________________
Key points
Participants changed the aids they used due to:
· having difficulties using the aid or it being unsuitable
· finding more efficient methods of management
· new designs and different functions
· developing a routine and becoming more organised
MHRA 04151: Memory aids and techniques
21Findings
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Medication regime
Participants were asked to describe the methods they use to ensure that they
followed their medication regime correctly. The seven devices and strategies
mentioned were used in various combinations to meet the individual needs of
each person, these are shown in table 8 together with the benefits and
disadvantages identified.
Table 8. Devices and strategies used by participants to recall and follow
their medication regime
Devices/Strategies Problems identified by Positive comments from
users users
Location • no alert • visual reminder
• item may be moved or • know where to find it
covered by another object
Routine • no alert • reminded through other activities
People • constant questioning by carers • reliable
Pill ‘dispenser’ • no alert • visual reminder
• physical limitations handling • feedback from labels on the aid
the device and empty cells
Packaging • no alert • day of the week marked on pack
• day of the week marked on • empty ‘blister’ gives feedback
the pack
• dosage instruction label
unreadable
Written notes • no alert • visual reminder
• can be lost or misplaced • provides information
Tick list • no alert • feedback to user
• can be lost or misplaced • reference for carers
Seven participants were taking medication at the time the interviews were
conducted. In addition three people who were no longer taking medication
gave an account of the methods they had used in the past to manage their
regime.
Most people were taking more than one medication on more than one occasion
MHRA 04151: Memory aids and techniques
per day. Two people used a system of preparing doses ahead of time but only
one person used a pill ‘dispenser’.
Location
All the participants kept their medication in specific locations. These locations
were often linked with another activity or were chosen to ensure the medication
remained visible. Examples of activities that were used to trigger the routine of
taking medication included, putting on the kettle first thing in the morning and
washing the dishes in the evening. Often it was simply the practice of ‘a place
for everything and everything in its place’ so that when individuals were
reminded to take their medication they knew where to find it.
22Findings
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Routine
Everyone mentioned routine as a method of management. Daily routines
seemed to be more structured in the morning and taking medication was
incorporated into the routine earlier in the day. Participants reported that later in
the day when they were more tired and their activities more flexible there was a
greater tendency for medication to be forgotten. Two people organised their
medication in advance for a day or a week.
People
Carers who were involved on a daily basis with the participants routinely asked
whether they had taken their medication.
Pill organiser
Only one person used a pill organiser, which was kept in a specific location.
This person was reminded to take medication by carers and it was one of the
tasks included on a daily checklist. A reminder on a wallboard ‘hub’ prompted
him to fill the organiser every week and a card contained in the wallet gave
details of the medication in the box and the doses to be taken.
Packaging
One participant had previously taken medication which was in blister packs with
the days of the week marked for each tablet.
Written notes
Notes were written by carers to:
· remind the user to take the medication
· tell the user when and what dose to take
Notes were either attached to the medication and placed where they could be
seen all the time or located at a ‘hub’.
Tick lists
Checklists were used to tick off each dose of medication taken and when, or
simply to remind the user to take their medication. Lists were written by carers
MHRA 04151: Memory aids and techniques
for users to follow. By ticking off each dose taken the user and carer could
check whether the medication had been taken. One participant ticked each box
of medication each time she took a dose.
Cueing
None of the methods used had integrated cues and some participants relied on
the following methods to prompt them when it was time to take medication:
· alarm clock
· other people
One participant had a system for remembering tablets when she was away from
the house. After she had taken the first dose of the day, the next dose would be
prepared and carried in a pill container. She would set the alarm on her wrist-
watch to alert her at the appropriate time.
23Findings
_______________________________________________________________
Compliance
Levels of compliance with prescribed medicines varied. Participants were
usually aware that they had difficulties remembering to take their medication.
Over half of the participants were able to comply with medication when carers
provided the cues. Participants were generally able to remember their
medication by using visual cues or as part of morning schedules.
Most individuals took morning doses of medication without any difficulty. One
participant reported that he forgot to take medication in the morning if there was
a change in routine or there was pressure of time. Later in the day, when they
were tired, people were more likely to forget to take their medication or be
uncertain as to whether they had taken it. Linked with another activity later in
the day, such as washing the dinner dishes, it was noted to assist memory more
successfully than relying on time cues e.g. bedtime alone. One person was
concerned that if medication were necessary in the future he would have
problems ensuring that he took it correctly. Empty cells in a pill organiser or
blister pack and tick systems were the only methods of feedback the
participants used.
One participant was taking five different medicines per day which she took at
breakfast time, ticking off each packet when she took a tablet. She had to keep
a magnifying glass with the medication as she was not able to read the direction
labels unaided. She had recently been prescribed an additional tablet which
was to be taken in the afternoon and this was kept separately on the
mantelpiece directly in her line of vision. A list of instructions written by her
carer was attached to the bottle to ensure the medication was not overlooked.
To facilitate compliance the General Practitioner (GP) of one participant
prescribed medication in a form that enabled her to take the medication in a
single daily dose. Blister packs marked with the days of the week were also
found to be helpful as they gave feedback. These did cause some confusion,
however if more than one pack of the same medicine was opened at the same
time individuals were then unable to synchronise the day of the week.
Repeat prescriptions
Six participants reported that they often relied on carers to organise repeat
MHRA 04151: Memory aids and techniques
prescriptions. One participant used empty medication boxes next to a ‘hub’ as
a visual reminder that repeat prescriptions were required. Another person kept
repeat prescriptions at the bottom of the tablet box to remind him to take it to
the pharmacy when the tablets ran out.
People living alone appeared to have most difficulty complying with their
medication regime. Five people, more than 70% of those taking medication,
managed by developing structures and set routines but they were all assisted
by carers on a daily basis. Three participants indicated that the better their
general health the better their memory seemed to be
“…when I'm calmer my memory does work a lot easier”
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