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Seizure (2006) 15, 267—273

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Cognitive rehabilitation of memory problems


in patients with epilepsy
Rudolf W.H.M. Ponds a,*, Mark Hendriks b

a
Psychiatric Hospital Vijverdal, Department of Neuropsychiatry, P.O. Box 88, 6200 AB Maastricht,
The Netherlands
b
Epilepsy Centre Kempenhaeghe, Heeze, Nijmegen Institute of Cognition and Information
(NICI), Department of Neuro- and Rehabilitation psychology, Radboud University Nijmegen,
P.O. Box 9104, 6500 HE Nijmegen, The Netherlands

Received 24 January 2006; accepted 15 February 2006

KEYWORDS Summary People with epilepsy often complain about their memory. Memory
Memory deficits; deficits are also most commonly observed during neuropsychological evaluation.
Neuropsychological Many patients with memory problems ask for some kind of memory training. General
rehabilitation; memory improvement is not possible, but learning mnemonics clearly will help to
Compensation solve some of the most common everyday memory problems of patients. Most
strategies; mnemonics follow the general rules for good learning or memory. In the design of
Memory rehabilitation a memory rehabilitation program some specific aspect should be taken into account,
program such as the need for psycho-education into the effects of cognitive deficits in daily
life, the impact of personality and emotional reactions, and the individual perception
of memory problems. Training goals must be tailor-made, small and as concrete as
possible and fully adjusted to the needs and wishes of the patients. Generalization of
the learned mnemonics is mostly modest or even absent.
# 2006 Published by Elsevier Ltd on behalf of British Epilepsy Association.

Introduction affective disorders like depression and anxiety and


an increased risk for psychotic conditions, particu-
People with epilepsy have more cognitive and beh- larly schizophrenia-like and paranoid states.1 In this
avioural problems than people without this condi- article we will focus on the management of the
tion. These include developmental problems like lack observed cognitive impairments in epilepsy and more
of social skills of low self-esteem, learning and edu- specific on the treatment of memory problems. Dif-
cational problems due to cognitive impairments, ferent cognitive disturbances are found in epilepsy
such as, attention or concentration problems, mental
slowing, language difficulties, deficits in executive
* Corresponding author. Tel.: +31 43 3685325;
functions and memory problems. Most commonly
fax: +31 43 3685317.
E-mail address: r.ponds@np.unimaas.nl observed during neuropsychological evaluation are
(Rudolf W.H.M. Ponds). the memory deficits. In this article we will describe

1059-1311/$ — see front matter # 2006 Published by Elsevier Ltd on behalf of British Epilepsy Association.
doi:10.1016/j.seizure.2006.02.011
268 R.W.H.M. Ponds, M. Hendriks

the current view of neuropsychological rehabilitation factors for memory impairment.10—12 Furthermore,
and focus on the cognitive rehabilitation of memory within this group of temporal lobe patients we have
deficits. Furthermore, we will focus on the specific shown that lateralisation of the epileptogenic focus
aspects that have to be taken into account when is the crucial additional risk factor.13 Patients with a
designing a memory rehabilitation program. Finally, unilateral left temporal lobe epileptic focus have
this will be illustrated with the rehabilitation pro- significantly increased risk of memory impairments,
gram that has been developed in Epilepsy Centre compared to patients with right temporal lobe epi-
Kempenhaeghe in The Netherlands. lepsy. These patients have specific deficits in the
association and clustering of verbal information on
their semantic correspondence, and on the acquisi-
Memory problems in epilepsy patients tion of verbal episodic information that is presented
auditory, which may be interpreted primarily as
Patients with refractory epilepsies frequently com- impairment in the storage process. The main effect
plain about cognitive impairments. Memory impair- of lateralisation appeared to be independent of the
ments are the dominant complaints in clinical other epilepsy-related factors influencing memory,
practice.2,3 The prevalence of memory problems in i.e. ‘seizure frequency’ and ‘total years with sei-
patients with refractory epilepsy has been estimated zures’. A high seizure frequency specifically seems
as high as 20—50%, and more than half of the patients to impair the first encoding stage of the memory
who are referred for neuropsychological assessment process. Patients having more than a total of 30
reported memory difficulties in daily life.4 In our own years with seizures, are more impaired in verbal and
study we analysed subjective memory complaints in a non verbal memory, and delayed recall. This is in
relatively large sample of 252 epilepsy patients with line with other studies that showed that patients
intractable seizures, using a standardized memory with a long duration of refractory temporal lobe
questionnaire for patients with epilepsy.3,5 They par- epilepsy may show a slow deterioration of general
ticularly complained about memory problems that intellectual functioning.14 However, other research-
reflect ‘absentminded behaviour’, such as forgetting ers argue that this cognitive decline in epilepsy
where a certain object has been put, or often check- patients progresses very slowly and must be
ing one’s pocket to find something. Secondly, they regarded as a result of normal aging similar to that
indicated the retrieval of complex meaningful episo- of people without seizures.15
dic information (i.e. being able to remember an
experience or story, or forget people’s names) as a
specific memory problem. Although there are some Neuropsychological rehabilitation
methodological differences these results are compar-
able with other research.6,7 The pattern of memory The development of neuropsychological treatment
complaints showed no relationship with epilepsy- programmes, which we will refer to as cognitive
related factors such as, age at onset, etiology, loca- rehabilitation, is one of the most challenging tasks
lisation of seizures, type of seizures, and anti-epilep- for neuropsychology. It is a promising field of work,
tic medication. However, we did find a strong but also a very complex one. The nature and severity
tendency to present memory complaints for older of cognitive ‘handicaps’ not only depend on the
patients, with higher intellectual functions, who sub- extent and nature of the brain damage or dysfunc-
jectively experience more emotional problems in the tion, but are also determined by (premorbid) per-
area of neuroticism. Memory complaints may thus be sonality characteristics (e.g. neuroticism), the
seen as a general ‘psychosomatic’ reaction in patients psychological reactions of the patient (e.g. depres-
who experience consequences of memory loss in their sion, anxiety), the environment of the patient (phy-
daily lives. As already described earlier in other brain- sical, other people) and last but not least what is
damaged patients, also in epilepsy patients memory expected of the patient (e.g. return to work or
complaints do not necessarily indicate memory def- education, participation in the family). For this
icits. In fact, only moderate correlations (i.e. 0.30— reason cognitive rehabilitation is never simple, in
0.40) are found between self-reported memory pro- the sense that you only have to learn the patient one
blems and objective test results with standardized or more simple ‘learning tricks’ to get round with
neuropsychological assessments.8,9 cognitive difficulties in daily life.
Many studies have indicated that memory def- Wilson has defined cognitive rehabilitation as
icits are the most frequently measured cognitive ‘any intervention strategy or technique which
impairments in epilepsy patients, and localized intends to enable clients or patients, and their
dysfunction, related to epileptic focal activity in families, to live with, manage, by-pass, reduce or
the temporal areas of the brain, is one of the key come to terms with cognitive deficits precipitated
Memory rehabilitation in epilepsy 269

by injury to the brain’ (p. 117).16 In this definition, will ‘restore’ memory with a training program.
restoration of cognitive function is not a goal, as it Creating a realistic perspective about the impact
was in the early days of cognitive rehabilitation. The and possibilities for improvement of the memory
key word now is compensation: learn the patient problems is the first important step in every memory
alternative ways to cope with the daily flow of treatment program.
information (e.g. remembering) instead of trying
to enhance information processing capacities (e.g. Personality (changes) and emotional
memory in general). Furthermore, the fact that reactions
cognitive rehabilitation should always incorporate
the environment of the patient (family, caretakers) Changes in personality and emotional disturbances
is clearly underlined. are frequently found after brain damage. These
Cognitive rehabilitation received a great amount include a wide range of problems such as beha-
of attention in the last decades. The scientific vioural problems (impulsiveness and low frustration
merits, however, are still very small. In a very large tolerance), lack of insight (and as a consequence
review Cicerone et al. conclude that there is hardly poor motivation), symptoms of depression and anxi-
any evidence-based treatment in the field of mem- ety, problems of acceptance, personality traits like
ory, attention, language or neglect.17 Most research neuroticism, rigidity or compulsiveness and dysfunc-
are case studies or non-controlled small studies. tional thought patterns like catastrophic reactions
RCTs are grossly lacking. If treatments effects are or the wish that only return to the premorbid situa-
found, they are mostly very modest and of little tion can be satisfactory. It needs no explanations
clinical interest. The future task for neuropsychol- that these problems strongly interfere with the long
ogists is not only to make cognitive rehabilitation and intensive learning and training that is required
more evidence-based but also to increase treatment in a rehabilitation program and should be taken into
effects to the level of clinical significance. account before rehabilitation starts.

Design of a memory rehabilitation Perception of disorder


program
For some patients a large discrepancy exists
When designing a memory rehabilitation program between the severity of the observed memory dis-
for patients with memory problems more general as turbances as indicated with memory tests and the
well as specific aspects should be taken into severity and impact of these memory problems in
account. General aspects include (1) psycho-educa- daily life. Patients may have relatively mild memory
tion into the effects of brain damage and cognitive disturbances but experience such extensive memory
difficulties, (2) the impact of personality changes problems that they hardly are able to function in
and emotional reactions and (3) the individual per- daily life. In this case, it is very likely that these
ception of the cognitive disorders. More specific memory problems are more related to loss of mem-
aspects of the program have to do with (1) what ory confidence instead of loss of memory compe-
memory problems should be trained and what are tence. A concept that may be used here is memory
the best (2) strategies to be used. self-efficacy. Memory self-efficacy is based or the
more general definition of self-efficacy of Bandura
Psycho-education who defined self-efficacy as the degree of belief one
had in his or her ability to mobilize the motivation,
Brain damage and cognitive problems in general cognitive resources, and courses of action needed to
have a deep impact in the life of a patient and exercise control over task demand (e.g. memory
his of her family. Many questions may rise about tasks).18 Self-efficacy judgements affect activities
the consequences of the cognitive deficits for future or task selection and the effort and persistence put
life or the possibilities to train or restore memory. It onto that specific activity or task. So the beliefs and
is surprising to note in clinical practice how little perceptions someone holds about his or her memory
patients and their family are informed about these strongly influences the (memory) activities he or she
questions. Patients often are not informed about the will engage in or how a memory task is performed. If
implications of their memory problems in everyday these memory beliefs are low, it is very likely that
life, which in itself depend strongly on life style and less effort (or an inefficient allocation of effort) is
activity pattern of the individual patient. In most invested in daily memory tasks, which might lead to
cases, patients are sent to the neuropsychologist by lower memory performance. Mostly, the patient will
their neurologist, with a well intentioned but far to also strongly focus and overreact on daily memory
optimistic perspective that the neuropsychologist failures (even if the are very common and normal,
270 R.W.H.M. Ponds, M. Hendriks

like forgetting someone’s name once a time), which How should the selected memory
in itself further strengthen the low memory beliefs. problems be trained?
So, poor memory performance becomes more a
function of self-doubt than actual lack of ability In general two approaches have been utilized in
(even if these abilities are mildly disturbed). Again it memory rehabilition. It all started with the ‘drill
will be clear that memory rehabilitation should first and practice’ approach, which consisted of the
focus on these undermining lowered memory self- repeated practice on memory tasks with the rather
efficacy beliefs, before mnemonic strategies are naı̈ve idea that this would improve memory capacity
trained. in general (the ‘memory as a mental muscle’
approach). However, a general improvement of
memory is never found with this method. Patients
Which memory problems should be clearly improve on the training task (e.g. word list
selected for training? learning), but this does not generalize to non-trained
memory tasks in another domain (e.g. remember
The simplest answer to this question is ‘that what names). This approach is only useful if the training
the patient wants to be trained in’, as far as his task is a relevant daily memory task for the patient
wishes are realistic. So ‘general improvement of my (e.g. finding a route to the bathroom in the hospital).
memory to the level as it was before my accident’ is The second approach, mostly used nowadays, is
not a good training goal, but learning the names of the compensatory approach in which patients learn
the nursing staff is. Training goals should always be to use specific mnemonic strategies to remedy spe-
tailor-made, small and as concrete as possible and cific everyday memory problems. A good example is
fully adjusted to the needs and wishes of the the technique of visualization for remembering
patient. Of course it is possible to learn a general name—face relations. In this strategy one tries to
strategy for remembering names, but even than the make a visual association between the name (e.g. Ed
best thing to do is to apply this strategy to a specific Noses) and specific characteristics of the face of
set of names. Only after repeated practice the some (e.g. Noses has a very big nose). Another
patient will generalize this strategy to other example of a compensation strategy is the use of
‘name-situations’ than the one trained for. But as an agenda. In clinical practice it is clear that such
a general rule one might state that patients by kind of compensation strategies do work, but the do
themselves have many difficulties to apply learned not come easy. There are no magical mnemonic
strategies beyond the training situation or beyond strategies and most require hard work, persistence
the training period. and creativity before they are of real practical use.
Most memory patients share a lot of common Even then, they are of use in only a very limited set
memory problems. The most frequently reported of the many memory problems a patient may
memory problems in the general population are also encounter in daily life. Both strategies mentioned
the most frequently reported (but far more for example clearly do rely on respectively creativ-
‘severe’) memory problems seen in patients. These ity (finding associations) and persistence (take a
are the forgetting of names, difficulties in wordfind- look in the agenda on several fixed moments during
ing, loss of property, loss of (new) verbal informa- the day).
tion (newspapers, books, discussions) and finally Compensatory memory strategies can be divided
forgetting of plans (prospective memory problems). in two categories: external and internal memory
Taking these memory problems into the training strategies. External memory strategies can again be
program will be beneficial for most patients. subdivided in three types. First, methods that are
Learning or relearning memory patient the gen- used to store information externally, like for
eral rules for a good memory also is of great impor- instance a calendar, a card system, agenda, diary,
tance. Again, these rules are the same as the electronic recorder, handpalm computer or a mobile
general rules for good memory in a normal and telephone. Second, methods that remind memory
healthy population. Patients with memory problems impaired people to perform a particular activity at a
benefit from these rules in the same way as healthy specified time in the future. Good examples are
people do. These rules for better memory are ‘more again the electronic agenda or a watch with alarm.
learning time improves memory’, ‘more attention Also very effective methods are asking other persons
improves memory’, ‘repetition improves memory’ to remind you of something or putting objects at a
and finally (and perhaps most important) ‘selection very specific place so you will be reminded at the
and organisation improves memory’. Remember correct time to do something (e.g. putting the
that most mnemonic strategies more or less rely garbage bag in front of your door so you will be
on these general memory rules. remembered to put at the street corner the next
Memory rehabilitation in epilepsy 271

day). The third and also most simple method, con- the keystones of cognitive rehabilitation programs.
sists of rearranging the environment in such a way Not the memory problems have to be treated, but
that a patient no longer has to rely on his memory or the patients with memory impairments.
to a far lesser extent. Examples are coloured stripes As far as memory rehabilitation for epilepsy
on the hospital floor that always lead to the bath- patients is considered, some factors have to be
room or the grouping of all the things needed for taken into account. In contrast with patients with
breakfast at one shelf in the kitchen. closed head injuries or cerebrovascular accidents,
There are two types of internal memory strate- epilepsy is a chronic condition. After the acute
gies: verbal strategies and visual imagery strategies. phase of non-progressive brain injuries patients will
The assumed positive effects of these strategies is generally improve, especially during the first years
based on the principles that these strategies lead to after injury. The chronic aspect of epilepsy may
a deeper level of processing or elaboration of the suppose that memory problems will get worse over
information to be remembered, focus on the linking time although this is still in debate as mentioned
of isolated items trough associations and enrich the above. Whether this is the case or, not many
memorized information with additional retrieval patients and their relatives are convinced of the
cues. Well-known examples of visual imagery are fact that epilepsy or the anti-epileptic treatment
face—name associations (mentioned above) and the will eventually cause a cognitive deterioration or
Loci-method used already in the old Greek time. even dementia. Additionally, as a patient having
With the Loci-method bits of information are men- frequent seizures this idea may be confirmed over-
tally placed in a well know place (e.g. the living time, especially when patients experience pre- or
room). Remembering these bits of information is post-ictal amnesia, or epileptic fugues. During a
done by mentally revisiting the same place and than memory treatment seizures even may interfere with
find the information at places you stored it before. progress, or may cause temporary discontinuation of
The visual imagery strategy can also be used for the treatment.
prospective memory. Visualizing the activities you Many patients and their relatives attribute the
plan to do (e.g. shopping in different shops), cognitive problems they experience in daily life, to
increases the change that you actually work out side effects of their anti-epileptic medication. As a
the list of shops you planned to visit. Well-known consequence of the chronic aspect of epilepsy, most
verbal strategies are the PQRST method to remem- patients have to take AED for several years. This may
ber text (Preview: first reading, Questions: make convince them of the idea that cognitive deficits are
questions about the content, Read: read again and less well treatable as long as they have to use anti-
answer the questions, State: repeat the content and epileptic medication even without any seizures.
Test: answer the questions again) or the use of In general, the memory deficits seen in epilepsy
acronyms to remember systematically all kinds of patients are less severe compared to severely brain
information (e.g. transforming a pincode into let- damaged patients or those with dementia or the
ters, make a name of the first letters of all the things Korsakoff syndrome. Furthermore, unlike for
you want to check before leaving the house). instance patients with frontal lobe damage or those
All internal strategies mentioned, clearly focus with specific neuropsychological disorders like ano-
on the better encoding of information. However, sognosia, epilepsy patients generally retain suffi-
many daily memory problems, also in patients with cient insight into their possibilities and daily
memory deficits, are retrieval problems in which handicaps. These are important factors to be con-
one cannot succeed in retrieving information that is sidered when designing a treatment program and
already stored in memory. It is somewhat surprising selecting participants.
to notice that hardly any work is done to develop As an illustration of a memory treatment program
retrieval strategies for memory patients. In for epilepsy, we will report on the memory rehabi-
essence, these strategies should focus on learning litation program in the Epilepsy Centre Kempen-
the patient how to perform a systematic search in haeghe as developed in large by the second author.19
his handicapped memory. An example is to consis-
tently ask the four Ws when trying to remember
specific events (what—when—where—who). Memory rehabilitation in Epilepsy
Centre Kempenhaeghe

Memory rehabilitaition in epilepsy Patients are referred the Department of Behavioural


Sciences by one of the neurologists because of
With the foregoing it will be clear that we do not memory complaints. With an extended neuropsy-
want to suggest that compensatory strategies are chological assessment self-reports by patients are
272 R.W.H.M. Ponds, M. Hendriks

confirmed psychometrically for diagnostic pur- Every third session partners of the participants
poses.2 Only patients with objectively defined mem- are invited to the clinic to participate in a group
ory deficits are considered as participants for the session. In this meeting one of the participants
treatment program described here. In case memory summarises all the techniques used so far, and the
problems are caused for instance by mood disorders, application to their daily life situation is discussed
poor motivation, impaired executive functioning, together. This is one way to enhance generalisation
patients are not included in the memory support to the natural environment. In addition, partners
program and an alternative treatment plan is for- get guidance as to how to encourage the partici-
mulated. Another aim of the neuropsychological pants to use memory techniques, and psychosocial
assessment is to determine the general cognitive problems related to memory deficits (and epilepsy)
abilities of the patients, as well as to measure are discussed. After every session the participants
specific other cognitive functions that are related get homework, to be presented in the next session.
to memory functioning in daily life (i.e. attention, The approach of every individually formulated
language, executive functions). Finally, some per- treatment goal is described in a plan of action,
sonality and motivational aspects that are crucial which is used as a guideline in daily life. This plan
for successful attending a rehabilitation program of action is based on a cognitive cycle (observation—
are described. planning—decision—action—checking—evaluation).
The neuropsychological assessment is supplemen- With this cognitive cycle specific treatment goals
ted by a direct assessment of everyday memory pro- are planned, memory strategies are chosen and
blems, using questionnaires completed by patients monitored during treatment. Furthermore, progres-
and important others (mostly the partners). On a daily sion is evaluated and the plan of action is adjusted if
basis participants and a partner record the observed necessary. With this basic approach we do not pre-
memory problems for 2 weeks. The combination of scribe treatment, but make the participant feel to
all the information highlights a list of individually be responsible for the way he will cope with memory
formulated problems that have priority in treatment. problems. Participants gain insight in the possibili-
These memory problems are described as specific ties and shortcomings of the techniques, and realise
as possible, like ‘‘I want to remember the names of that the effects of treatment depend especially on
my football team’’. Treatment goals as ‘‘I want to exercising in their natural environment.
remember what has been said to me’’ are considered Three months after finishing the total treatment
as too vague and have to described more concrete. program, participants return to the clinic for a so-
Eventually a list of about 10 concrete memory pro- called ‘brush-up’ for 1 day. In the morning session
blems, are formulated as treatment goals. the individual plan of action is evaluated individu-
Memory rehabilitation is preferably organised on ally with the participants. Secondly, the partici-
an out-clinic basis. However, if a patient is admitted pants undergo a neuropsychological evaluation to
to our clinic for other reasons, memory support can measure treatment effects. In the afternoon a final
be an integrated part of the total clinical treatment. group session is organised for all participants to
Before starting, every participant is given a course- evaluate their experiences of the period between
book in which the treatment is described. In 6—8 treatment and the brush-up session.
sessions that are scheduled every 2 weeks patients
learn to use compensatory strategies for their per-
sonally formulated treatment goals.
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