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Self-maintenance therapy in Alzheimer's disease
Article in Neuropsychological Rehabilitation · September 2010
DOI: 10.1080/09602010143000040
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Romero B., Wenz M. (2001) Self-Maintenance-Therapy in Alzheimer’s Disease. Neuropsychological Rehabilitation, 11, 333-355
Self-Maintenance Therapy in Alzheimer`s Disease
Barbara Romero & Michael Wenz
Alzheimer Therapiezentrum der Neurologischen Klinik Bad Aibling
Address for correspondence: Dr. Barbara Romero, Alzheimer Therapiezentrum
der Neurologischen Klinik Bad Aibling, Kolbermoorerstr. 72, D-83043 Bad Aibling,
Germany
e-Mail: [email protected]
2
A short-term residential treatment programme designed to prepare patients with
dementia and caregivers for life with a progressive disease was evaluated in a one
group pre-treatment post-treatment design. The multicomponent programme
included: (1) intensive rehabilitation for patients, based on the concept of Self-
Maintenance Therapy, and (2) an intervention programme for caregivers. The results
showed a consistent improvement in patients' depression and in other
psychopathological symptoms, which can be seen as directly beneficial for patients.
Following treatment, caregivers also felt after the treatment less depressed, less
mentally fatigued and restless, and more relaxed. Controlled studies are needed to
support the preliminary results presented and to address hypotheses about factors
responsible for benefits as well as for treatment resistance. The concept of Self-
Maintenance Therapy allowed the prediction that experiences which are in
accordance with patients' self-structures and processes support patients' well-being,
reduce psychopathological symptoms and facilitate social participation.
3
Patients with dementia of Alzheimer type (AD) gradually lose their cognitive
competence in the course of the disease. The lost and preserved competencies of
patients are traditionally described in terms of neuropsychological functions and daily
activities, like "spatial orientation" or "naming" abilities. Rehabilitation programmes
grounded on this traditional approach aim at facilitation of basic functions, for
example facilitation of memory performance or attention. However, interventions
designed to improve basic neuropsychological functions have not really proved
beneficial for patients with AD. Neuropsychological research has revealed that the
relevance of functional training for dementia patients have been limited (Backman,
1992; Heiss, Kessler & Mielke, 1994; McKittrick; Camp & Black, 1992).
We proposed a systemic approach for evaluating patients' psychosocial resources
and for developing rehabilitation programmes (Romero, 1997; Romero & Eder, 1992;
Romero & Wenz, 2000). There are two systems that should be stabilised and
preserved in a rehabilitation programme for patients with dementia:
1. the self as an intra-individual system, and
2. the social network as an interpersonal support system.
Self maintenance as a therapy goal in AD
Patients’ abilities, cognitive functions, skills and attitudes at each stage of the
disease are organised in relation to the self system. The self mediates a sense of
personal identity and continuity. The self mediates the way in which the patient
understands and integrates new experiences, reacts and makes decisions. To
4
maintain the feeling of continuous identity, the feeling of "I am still me" as well as the
feeling of "I can understand what is going on" and "I can manage" is very important
for the person's well-being and behaviour (Antonovsky, 1979; Antonovsky, 1987;
Greenwald & Pratkanis, 1984; Havens, 1968; Lyman, 1998; Romero, 1997; Romero
& Eder, 1992).
The patient's self must cope with many changes in competence, social roles, and
activities:
"Every few months I sense, that another piece of me is missing. My life, my self,
are falling apart. Most people expect to die someday, but who ever expected to
lose their self first" (Cohen & Eisdorfer, 1986, p.22).
When it is too difficult to integrate new experiences into prior self-structures, a
patient reacts with shame, depression and/or aggression. Therefore, to reduce a
patient's suffering, one has to support the patient's self.
The maintenance of the patient's self in its coherence and integrity is important not
only for well-being. We can also expect that a patient can better make use of his or
her cognitive competence and is less vulnerable to developing disturbed behaviour.
The following predictions can be made on the basis of psychological theories of the
self concept:
1. The self is a cognitive schema, which actively encodes, processes and
maintains information about the person and the environment. It enables a
person to recognise situations, to make decisions, to develop attitudes and
to orient to the environment (Epstein, 1973). Accordingly it can be predicted
5
that Alzheimer patients will use their cognitive competence more effectively if self-
structures are better integrated and self processes are not overtaxed.
2. Experiences which violate self-based expectancies are likely to cause extremely
negative emotions such as fear, shame, aggression or depression. Ronch
(1993) calls this an inevitable feeling of hopelessness and despair.
Accordingly it can be predicted that avoiding patients' self-violating
experiences results in a reduction of strongly negative emotions. It must be
emphasised that not all negative emotions can and should be avoided: each patient
can feel sometimes hopeless or angry and a caregiver should be able to validate
these emotions.
3. In the course of Alzheimer’s disease, behavioural disturbances like running away,
aggressive outbursts, agitation, restlessness and social withdrawal are very
common. These symptoms are partly caused by incompatibility between patients'
actual experiences on the one hand and patients' self-based expectations and
preferences on the other hand. Accordingly it can be predicted that increasing the
number of experiences which fit the self-structures of patients (and reducing the
number of contradictory experiences) results in a reduction of behavioural
disturbances or psychopathological symptoms.
The self is a dynamic system that forms itself throughout the course of one's life. In
planning interventions for self-maintenance it is important to take into account patients'
personal goals and values, especially with regard to their present situation and to the
experience of dementia. In this way, therapeutic interventions acquire more personal
relevance.
6
Maintenance of the supporting social system
The other system that needs to be stabilised is an interpersonal one. Patients live in
a social community, in most cases in a family, and they depend on social support to
manage their daily lives. Supporting social systems themselves have to be
supported. Caregivers in particular need help and integration within wider family
networks as well as within other social structures. Psychosocial resources such as
supporting coping strategies and a higher level of social support reduce physical
health problems and depression in caregivers (Goode, Haley, Roth, & Ford, 1998).
Caregivers receiving a multicomponent program designed to provide counselling and
social support were less depressed and more likely to care for dementia patients at
home (Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996).
Self-Maintenance Therapy (SMT)
The primary aim of SMT is to maintain the sense of personal identity, continuity and
coherence in patients with a progressive dementia for as long as possible. SMT
incorporates procedures from existing, well-established methods like milieu therapy,
validation, reminiscence therapy and psychotherapy - modified in accordance to the
primary aim of SMT (for a comparison of SMT and established methods, see
Romero & Eder, 1992). There are four main components of SMT: psychotherapeutic
support, self-knowledge training, facilitation of satisfying every day activities and
validating communication in caregiving.
Psychotherapeutic support
7
In recent years support groups focusing on education and sharing of experiences
about development of coping strategies as well as individual psychotherapeutic
interventions have been recognised as valuable for persons in the early stage of
dementia (Bauer, 1998; Hirsch, 1994; Petry, 1999; Radebold, 1994). In the ATC
programme, therapists aim to help patients to understand the disease and to
maintain a sense of meaningfulness. It is helpful for the patients to be oriented
towards those goals in life, that do not yet have to be given up. Learning how to deal
wisely with the disease offers opportunities for personal growth, despite the
inevitable cognitive decline.
Self-related knowledge training
SMT includes a training programme to hold in memory some chosen components of
self-knowledge for as long as possible. There are theoretical reasons (see Romero,
1997; Romero & Eder, 1992) which offer the rationale for the prediction that
overlearning of chosen biographical knowledge mediates the sense of personal
identity, continuity and well-being. The training consists of three steps:
Step one: therapists assess which biographical memories are not yet forgotten and
are currently available for the patient. At the same time therapists evaluate which of
these maintained memories have personal relevance to the patient and are self-
related. The established way to find out the central contents of self-related
knowledge is to ask the patient to tell stories about himself or herself. After some
sessions it becomes clear which stories are repeated most often and touch the
patient at an emotional level. In addition to free narration, therapists use personal
photos from all life periods to assess patients' memories more systematically. As a
8
result there is a set of stories, family photos, tapes with songs and music, all of which
can stimulate and support the patient’s sense of personal continuity and identity.
Step two: therapists record this set of self-knowledge components in a form of
external memory storage. It depends on the therapeutic setting which media can be
used for this purpose. At the ATC, some very promising results have been obtained
using computers, which offer many possibilities for external memory storage
(Riederer, 1999). Therapists scanned and stored personal photos on disk and used
a microphone to record stories and comments by the patient. Special software made
it possible to identify and display desired elements of the stored knowledge, for
example: "everything about the patient's mother" or "names of school friends and
teachers the patient recalled in her school class photograph, with her comments".
Computer-supported training in personal memories has also been reported by
Hofmann and co-workers (Hoffmann, Hock, Kuhler, & Müller-Spahn, 1996). In the
future computers will undoubtedly be used more often as a kind of substitute for a
patient's personal semantic memory. Currently, patients prefer more traditional
media like a personal memory book for an individual patient. In a personal memory
book selected family photos and other pictures (e. g. familiar landscapes) are kept as
a book together with the patient's comments. Other media like tapes and videotapes
can be also used for external memory storage.
Step three: the patient reviews the chosen components of self-related knowledge,
supported by the external memory records. Systematic reminiscence with these
memories is at first practised with therapeutic assistance. The family is instructed to
continue the reminiscence later on at home with the assistance of the caregiver. At
9
this way the central contents of self-related knowledge can be continuously available
for patients.
Satisfying everyday activities
Even more important than the special training in personal memories are daily
activities and the way in which caregivers communicate with patients. Psychosocial
stress as well as a low level of satisfying activities and experiences are indicated as
risk factors for additional problems in the course of the disease (Bauer, 1994; Broe,
Henderson, Creasey, Mc Cusker, Korten, Jorm, Longley, & Anthony, 1990;
Friedland, Smyth, Esteban-Santillan, Koss, Cole, Lerner, Strauss, Whitehouse,
Petot, Rowland, & Debanne, 1996; Motomura, Ohkubo, Asano, Tomoda, Akagi, &
Seo, 1996).The activities from which patients previously derived satisfaction often
have to be replaced by other similar or perhaps different activities (Teri & Lodgson,
1991). Therefore persons with dementia are in need of special help as well as a
supportive environment. For example, a keen amateur photographer was still able to
choose a subject for his pictures, but was no longer able to handle the camera.
When his wife took over the technical part, he was able to resume his hobby. The
couple took pictures together: the husband was looking for interesting subjects (with
obvious engagement and enjoyment) and the wife "pushed the button". After the
pictures were developed, he was able to remember some of the subjects and was
very proud of his creative activity. Art therapy offers many possibilities to engage in
creative activity, even for patients with apraxia (Urbas, 2000). Of course common
everyday activities as walking, housework, dancing, visiting a church or meeting with
other people can be integrated in a satisfying routine. Studies show that intervention
focusing on enrichment of the activity spectrum is supportive to both patients and
their carers (Aldridge, 1994; Beatty, 1999; Palo-Bengston, Winblad, & Ekman,
10
1998).Therapists at the ATC work out individual programmes to stimulate patients'
participation in daily life in the context of their individual resources.
Validating communication in caregiving
Therapists educate caregivers to better understand patients' changed behaviour and
to handle patients' problems more competently. Caregivers learn that the patient's
way of making sense of personal experience should always be validated and
supported respectfully, because it is the only and the best way in which the patient
can integrate his or her experiences.
Alzheimer Therapy Centre (ATC) at the Neurological Hospital Bad Aibling
The Alzheimer Therapy Centre was founded in 1999 as a part of the Neurological
Hospital Bad Aibling in co-operation with the Clinic and Polyclinic of Psychiatry and
Psychotherapy of the Technical University Munich. The therapy centre provides a
four-week residential treatment programme for patients with dementia and their
caregivers. The dementia syndrome with multiple, progressive cognitive deficits
requires interdisciplinary and integrative rehabilitation concepts, which take into
account somatic, psychiatric, functional and psychosocial aspects of the disease.
The importance of a short-term intensive treatment programme, like that provided at
the Alzheimer Therapy Centre, lies in the interdisciplinary planned preparation of
each individual family for the life with the disease at home (Baier & Romero, 2000).
The best place to provide a treatment programme of this kind is in a specialised
center setting. There is a need for out-patient, day and residential treatment
programmes which complement each other. Short-term in-patient rehabilitation
programmes for dementia patients are a new concept, and we report our preliminary
11
experiences in this field. Also, caregivers have not been consistently involved in
rehabilitation programmes in the past although early results were very promissing
Brodaty and co-workers (Brodaty, Gresham, & Luscombe, 1997) demonstrated in a
prospective, randomized control study with an 8 year follow-up that a structured
memory retraining and activity program for dementia patients delayed
institutionalisation of these patients provided that caregivers also received an
intensive residential caregiver training programme.
Treatment goals
The treatment programme was designed to prepare patients with dementia and
caregivers for the life with a chronic progressive disease. The aim was to
reduce patients' loss of confidence in social interaction and withdrawal as well as to
reduce patients' psychopathological symptoms like depression, apathy, agitation or
aggression, and to facilitate their participation in daily life in a manner that fits their
level of competence. Intervention with caregivers was designed to support their
psychological well-being, to improve their competence to accompany the patient and
to support their social integration.
Treatment groups
a. Patients with Alzheimer`s disease, vascular dementia, frontotemporal
degeneration and other dementias.
The diagnosis of a dementia syndrome is a criterion for participation in the treatment
programme. Patients in different stages of dementia are treated unless they are
12
unable to take part in the treatment programme (for example bedridden or extremely
agitated and uncooperative patients).
b. Caregiving relatives.
Over 80 % of patients with dementia are cared for in the family, in most cases by one
close relative. These relatives need help and support to fulfil their role as caregiver
and to maintain and stabilise their own psychological and physical well-being at the
same time. Integration of caregivers lies at the heart of the treatment programme.
Treatment programme
(1) Diagnosis and medical treatment
Reliable diagnosis and adequate medical treatment are an essential starting-point for
developing an appropriate rehabilitation programme. At the ATC patients are
diagnosed and medically treated for somatic, cognitive and psychopathological
problems. All patients with AD who tolerate acetylcholinesterase inhibitors were
treated with donezepil or rivastigmine. which have been shown to slow down the
progression of cognitive decline (Corey-Bloom, Anand, & Veach, 1998; Rogers &
Friedhoff, 1998). Psychopathological symptoms like agitation, hallucinations or
depression are treated medically with antidepressants and/or neuroleptics.
(2) Rehabilitation program for patients
The intensive therapy programme (approx. 20 hours per week) adopts an
interdisciplinary approach which is tailored to the individual in the light of the medical,
neuropsychological and psychosocial assessment. Group and individual sessions
are included. In addition to the programme for patients, there is also a joint
13
programme for patients and caregivers designed to allow transfer of the experiences
from treatment in the ATC to daily living. The rehabilitation programme includes art
therapy, gymnastics, massage, relaxation, self-related knowledge training, everyday
activities like cooking and working in the garden, making music and singing as well
as different cultural and social activities. Therapists observe what kind of activities
the patients prefer (or reject) and what kind of support is necessary to compensate
for lost competence. Some patients in the early stages of dementia receive
psychotherapeutic support to cope with the progressive cognitive decline. For some
of the patients with very early dementia certain external memory aids (for example:
always putting keys in the same place, taking notes) can be helpful. In these cases
the use of individually-tailored aids is taught to the patients. A number of studies
have demonstrated improvement in everyday functioning of Alzheimer patients
resulting from the introduction of external memory aids (Clare, 1999; Clare, Wilson,
Carter, Breen, Gosses, & Hodges et al., 2000; Woods, 1996).
(3) Care
Some of the patients are not yet in need of physical care, but others need help with
dressing, personal hygiene or going to the toilet. The physical care required during
treatment is usually carried out by the relatives. The ATC nurse provides physical
care in some cases to relieve the caregiving relatives or to educate them.
(4) Physiotherapy and physical treatment
If required, patients and caregivers can receive massage, fango, lymph drainage,
electrotherapy and physiotherapy.
(5) Caregiver intervention
14
The treatment programme in the ATC aims to support the caring relatives and to
stabilise the social system to which they belong. Caregivers can improve their
competence to accompany the patient in a way that is anticipated to have a positive
effect on the self of the patient. Additionally, therapists provide psychotherapeutic
and social support for the caregivers to stabilise their well-being and to prevent an
early decompensation and loss of the caregiver’s resources resulting from strain and
the burden of the caregiving experience. Caregiver interventions include an
education programme in the form of individual and family sessions and support
groups as well as psychotherapeutic support in individual sessions, art therapy,
relaxation training and social work consultation. The core programme runs for 8
hours per week, but varies due to individual needs. Caregivers also experience relief
while at the ATC because they do not have to care for the patient alone, and do not
have to carry out their usual household tasks such as cooking or cleaning.
Staff
The therapeutic team consists of five different professionals - a medical doctor, a
social worker, a psychologist, an art therapist and a nurse - and the ATC director
who is a neuropsychologist. This small team is supported by Zivildienstleistende
(young men completing the civilian alternative to national military service) and
trainees.
With respect to medical supervision, diagnostic procedures, laboratory tests and
medical consultations, the capacities of the Neurological Hospital are used. In
emergencies and other special situations medical and nursing support is obtained
from the Neurological Hospital.
15
Location and establishment
In order to support the therapy goals through provision of a friendly, homely
atmosphere, the ATC is located in a modern residential area, close to the
Neurological Hospital. Up to 15 couples can be accommodated in 15 two-room
apartments. The ATC has in addition a small kitchen for patients, a dining room,
several group- and therapy rooms, and offices for staff. A living room and garden
facilitate contact between the families.
Costs
The total costs of the patients' treatment were covered by patients' health insurance
in most of the treated cases. Decisions about reimbursement of costs are made on a
case-by-case basis following application by the patient to the relevant insurance
company. For the caregivers the stay at the ATC (inclusive of accommodation, meals
and psychoeducational treatment) is free; that is to say, the ATC covers the
caregivers' costs.
Short-term effects of the rehabilitation programme and caregiver intervention
at the ATC Bad Aibling: preliminary results
16
We report preliminary results of an in-patient treatment programme for AD patients
and their caregivers. We predicted, that immediately after the treatment programme
there would be an improvement in patients' social behaviour and a reduction of
patients psychopathological symptoms such as depression, apathy, agitation or
aggression. Memory functions and everyday functional abilities were predicted to
remain unchanged. Caregivers' depression and mood were predicted to improve.
Pre-treatment assessments were completed at the start of the programme, and
follow up assessments at the end of the programme (approximately 3 weeks after
admission and a few days before discharge).
Method
Design
The treatment programme evaluated here was established as a clinical service and
not specially designed for the project. In the study a one group pre-test post-test
design was used. In this preliminary study there were no resources available to
support a more powerful design using a control group. A further study with a control
group of patients receiving standard treatment is in preparation.
Patients
In this preliminary analysis, results are included for all patients with a diagnosis of
Alzheimer's disease or mixed dementia (Alzheimer's disease with cerebrovascular
components) according to ICD-10-criteria and their caregivers, who had completed
the treatment programme at the Alzheimer Therapy Centre in Bad Aibling between
May 1999 and April 2000. Patients with other forms of dementia and patients who
17
completed a shorter programme than three weeks (the standard duration of
treatment is four weeks) were excluded. This resulted in a sample of 43 patients and
43 caregivers. For some persons, not all data were available, and consequently the
number of participants varies for the reported measures.
The treated patients were relatively young: the median and the mean was 70 years
(range 55 - 90 years). A fairly high percentage of the patients, 52 %, developed
dementia before the age of 65. The percentage of women was relatively low (35 %).
The stage of dementia was assessed with the Mini Mental State Examination
(MMSE, Folstein, M.F., Folstein, S.E. & Mc Hugh, 1975). Most of the patients
demonstrated a moderate stage of dementia, but the sample included patients in the
early and late stages. The median and the mean MMSE score was 14; one patient
achieved the maximal score of 30 and the most disturbed patient a score of 1.
Medical treatment with acetylcholinesterase inhibitors is standard in Alzheimer's
disease and 37 patients (86%) were receiving donezepil or rivastigmine at follow up.
Six patients were not receiving this medication because of side effects.
The course of treatment with acetylcholinesterase inhibitors differed for individual
participants. Most of the patients had been treated with donezepil or rivastigmine for
some months or years before entering the programme. After admission the dose was
increased for some of these patients, while for others donezepil was changed to
rivastigmine or vice versa, because of side effects. Some patients received an
acetylcholinesterase inhibitor after admission for the first time; sometimes this was
soon after admission, but in other cases where additional diagnostic investigations
were needed, the medication was introduced at a later stage.
18
About 40% of the patient-group (17 patients) were being treated at follow up with
antidepressant and/or neuroleptic medication, because of special indications.
Caregivers:
The caregivers were most often spouses: 28 (65%) wives and 12 (28 %) husbands.
Three patients were living alone and were supported by a daughter (one patient) or
brothers (two patients), who also accompanied the patients during treatment. All but
these three patients were living together with their caregivers. The average age of
the caregivers was 66, ranging from 50 to 80 years.
Outcome measures
Patients:
All questionnaires were completed by caregivers, who gave their perceptions of
patients' difficulties. Patients with Alzheimer dementia are able to give a valid report
about their own psychopathological symptoms only to a limited extent.
Cornell Depression Scale (CDS): Depressive symptoms in the patients were
assessed using the Cornell Depression Scale (Alexopoulos, Abrams, Young, &
Shamoian, 1988). This instrument was developed especially for patients with
dementia. Caregivers rated the affective state of the patient at admission and at
follow up in a semi-structured interview with a psychologist.
CERAD Behavior Rating Scale for Dementia (BRSD): The BRSD (Tariot, Mack,
Patterson, Edland, Weiner, Fillenbaum, Blazina, Teri, Rubin, Mortimer, & the CERAD
Behavioral Pathology Committee, 1995) was administered to the caregiver in a semi-
structured interview to assess behavioural disturbances and other
19
psychopathological symptoms in the patients. Symptoms like depression, affective
lability, apathy, irritability, agitation, aggression, psychotic features and other
psychopathological symptoms were rated with this scale.
NOSGER: For global judgement of disturbances in activities relevant to everyday life
we administered the Nurses Observation Scale for Geriatric Patients (NOSGER,
Spiegel, Brunner, Ermini-Fünfschilling, Monsch, Notter, Puxty, & Tremmel, 1991), an
instrument which is often used in evaluation studies with dementia patients.
The scores of the 30 items are summarised into 6 subscales (Memory, Instrumental
activities of daily living, Self-care, Mood, Social behaviour, Disturbing behaviour), all
of which assess the degree of deterioration or disturbance.
Caregivers:
Center for Epidemiological Studies-Depression Scale (CES-D), German version, was
used to assessed depression in the caregiver group (Radloff, 1977; German version:
Hautzinger & Bailer, 1993).
Mehrdimensionaler Befindlichkeitsfragebogen (MDBF, Steyer, Schwenkmezger,
Notz, & Eid, 1997, Multidimensional Mood States Questionnaire). Mood components
were assessed with this well-validated German questionnaire for the assessment of
momentary mood states called The MDBF includes 24 bipolar items which can be
summarized into 3 subscales (good vs. bad mood; alertness vs. tiredness;
rest/calmness vs. restlessness). The items are adjectives like „tired„ or „well„ and
subjects have to judge each adjective on a 5-point-scale concerning how they are
feeling at the moment.
20
Date were available for 27 participants on the CES-D and for 40 participants on the
MDBF.
Statistical analysis
In all analyses non-parametric procedures were used. To compare the outcome
measures at pre-treatment and at follow up, as well as in two subgroups of patients,
Wilcoxon Signed Rank Tests were employed. The difference between pre-and post-
treatment scores was taken as an Improvement Index (II). Additionally the standard
effect size measure was calculated as a difference between a pre-treatment score
and follow up score divided by the pre-treatment standard deviation. Correlations
were calculated using Spearman rank correlations.
Results
Patients:
As predicted the mean changes from pre-treatment to follow up reached statistical
significance on all outcome measures except the NOSGER „Memory„, „ADL„ and
„Self-care„ subscales. The Cornell Depression Scale shows significantly lower scores
at folllow up (Table 1). Additional analyses indicated the clinical relevance of high
depression scores at pre-treatment as well as of reduction of depression scores at
follow up. Suggested cut-off scores of the CDS are 8 for mild depression and 12 for
moderate depression. At pre-treatment there were 26 (63 %) patients with a score
higher than 7 points and 15 (36,5 %) with a score higher than 11. At follow up there
21
were only 3 patients (7 %) with a score of 12 or higher and 10 (24 %) patients with a
score of 8 or higher.
The BRSD showed a reduction of psychopathological symptoms at follow up (Table
1).
Disturbances of social behaviour (NOSGER subscale "Social Behavior") and
psychopathological symptoms (NOSGER subscale "Disturbing Behavior") were
reduced at follow up (Z=-2,442, p=0,05; Z=-3,350, p=0,001 respectively). Changes
on the subscales „Memory„, „ADL„ and „Self-care„ failed - as predicted - to reach
significance.
In terms of effect size, Table 1 indicates that large treatment effects were observed
for patients' depression (CDS), moderate to large effects for patients' behaviour
(NOSGER disturbing behaviour, BRSD), small effects for memory, IADL, mood and
social behaviour (NOSGER subscales) and no effect for self-care (NOSGER
subscale).
To analyse how outcome measures relate to the age of patients and the stage of
dementia, correlations were used. NOSGER subscale scores for "Memory" and
"Self-care" as well as NOSGER global score correlated mildly (R = -.3 to -.4), as
could be expected, with the MMSE score ("Memory": -.3 and -.4, pre- and post-test
respectively; "Self-care: -.4, post-test; NOSGER-global score: -.3, pre-test. No other
NOSGER score correlated with the MMSE. There was also no correlation between
NOSGER scores and the age of patients. Cornell Scale scores and CERAD
Behavior Rating Scale scores similarly showed no correlation with patients' age. The
22
Cornell Scale score again showed no correlation with the MMSE score. CERAD
follow up score but not pre-treatment score correlated mildly (R = -.4) with the MMSE
score.
To analyse the influence of medication with neuroleptics and antidepressants on
general treatment effects we compared the psychopharmacologically-treated (PT, n
= 17) and non-psychopharmacologically-treated (PnT, n = 26) groups. In the PT
group the mean MMSE score was significantly lower, and BRSD score at pre-
treatment was significantly higher at follow up as well. This suggests that the PT
group included patients with more advanced dementia and with more affective and
behavioural problems than did the PnT group. NOSGER and Cornell Depression
Scale demonstrated no group differences. In both subgroups following treatment
there were significant differences in the predicted direction on CDS (PT: Z=-3,417 ,
p=0,001; PnT: Z=-4,294, p=0,001) and on BRSD (PT: Z=-2,667, p=0,01; PnT: Z=-
3,637, p=0,001). NOSGER global score changed significantly at follow in the PnT
group (Z=-2,421, p=0,05) but not in the PT group (Z=-1,227, P=0,2).
To analyse the influence of factors like the age of patients, stage of dementia and
medical treatment on treatment effects we calculated a improvement index (II) as a
difference between pre treatment and follow up scores on outcome measures. There
was no correlated between II and either age or MMSE scores. There was no
difference in II in the PT and PnT groups.
Caregivers:
23
In the caregiver group a comparison between pre treatment and follow up showed
the predicted effect on depression and mood state.
Lower CES-D scores at follow up indicate a reduction of depressive symptoms in the
caregiver group (Table 2). At admission 48 % of the caregivers (13 persons) showed
scores above the critical cut-off-point (for the German version: 23 points). At follow
up the number of participants above this cut-off fell to 15 % (4 persons).
Higher post-treatment scores on the subscales of the MDBF indicate better mood,
lower mental fatigue and lower feelings of restlessness. Pre-post comparisons were
statistically significant (Table 2; good vs. bad mood: Z=-3,005, p=0,01; alertness vs.
mental fatigue: Z=-3,102, p=0,01; rest vs. restlessness: Z=-2,878, p=0,01).
With regard to effect size, Table 2 shows that large treatment effects were observed
for caregivers' depression (CES-D) and moderate effects for mood, tiredness and
restlessness (MDBF subscales).
Patient and caregivers:
It could be expected that well-being of caregivers depends to some degree on the
affective and behavioural disturbances of the patients. On the other hand caregiver
reports about patients' mood and behaviour can depend on caregivers' own well-
being, and may be influenced by biases in perception. Correlations were used to
analyse the relationship between caregivers' well-being and caregivers' reports of
patients' symptoms.
At pre-treatment as well as at follow up there were mild to moderate correlations
between measures of caregivers' well-being (3 MDBF subscales and CES-D) on the
24
one hand and measures for patients disturbances (NOSGER global score and
Cornell Depression Scale) on the other hand. Correlation quotients ranged from .3 to
.7 in the expected direction. CERAD scores correlated only at post-treatment with
CES-D scores. Additionally caregivers of patients who were treated
psychopharmacologically (PT subgroup) showed significantly more depressive
symptoms on CES-D than caregivers in the PnT subgroup at follow up.
There were no correlations between caregivers' well-being at post-treatment and
patients' improvement index.
Discussion
We have reported an in-patient treatment programme for AD patients and their
caregivers designed to reduce patients' loss of confidence in social interaction,
withdrawal and isolation as well as to reduce patients psychopathological symptoms
like depression, apathy, agitation or aggression and to facilitate a means of
participation in life which fits the level of patients' competence. Caregiver intervention
aimed to support their psychological well-being and to improve their competence to
accompany the patient. In the present paper we report the basic concept of the
therapy and preliminary results with a follow up immediately after the treatment
programme. Studies with follow up intervals of some months and years are required
to evaluate how enduring the results are in the home setting.
25
The results from this study showed - as predicted - a consistent improvement in
patients' depression and in other psychopathological symptoms as assessed by
caregivers reports on the questionnaire measures (Table 1).
The effect size indicators were moderate to large. Even small reductions in
depression and in other psychopathological symptoms can be seen as beneficial for
patients. In particular, the reduced number of patients with mild or moderate
depression, as assessed by the Cornell Depression Scale, shows the clinical
significance of the affective changes. At the same time a considerable proportion of
patients (24%) show mild depressive symptoms also at follow up (pre treatment:
63%) and few patients (7%) even moderate depression (pre treatment: 36%). This
demonstrates that the treatment was beneficial for many but not for all patients and
further studies are needed to understand more about the factors that influence
outcome and how therapy methods can be improved. Psychopathological symptoms
are common in a dementia population and their treatment is important because
problematic behaviours are a major precipitating factor in the decision to
institutionalise a dementia patient (Radebaugh, Buckholtz, & Khachaturian, 1996;
Steele, Rovner, Chase, & Folstein, 1990; Swanwick, 1995), in long-term
hospitalisation (Eastley & Mian, 1993; Shah, 1992) and in over-medication (Martin,
McKenzie, & Ames, 1994; Shah, 1993).
The results also support the prediction that social behaviour improves, at least to a
limited extent, following the rehabilitation programme. In further studies, social
behaviour and patients' social participation should be evaluated in a more specific
way. In the present study social behaviour was assessed with a subscale of the
NOSGER, which is geared more towards a global assessment of patients deficits.
26
Behavioural and affective symptoms (NOSGER, BRSD, CDS) as well as an
improvement index for these measures showed no correlation with patients' age.
This result suggests that even very elderly patients can benefit from the rehabilitation
programme. The programme was tailored to the individual resources of patients and
of their social networks. In this way the programme was adjusted to take account of
age and one could expect effects which are not dependent on age. However, this
result needs to be interpreted with caution because the proportion of patients aged
80 years and over was low, and the few 'old old' participants are not likely to be
representative for this age group. Further studies including a larger sample of older
patients should address this practically important question. Unfortunately many
medical doctors as well as non-professionals believe that positive treatment results
can only be achieved, if at all, in younger patients. There is no evidence for these
beliefs.
As could be expected, patients with lower MMSE scores were reported to have more
memory problems on the NOSGER. There was also a mild tendency for patients with
lower MMSE scores to have more psychopathological symptoms, as assessed by
the BRSD. The incidence of behavioural symptoms is reported to be highest in
moderate and severe dementia (Reisberg, Franssen, Sclan, Kluger, & Ferris, 1989).
Patients' depression (Cornell Scale) did not depend on the stage of dementia
(MMSE).
The improvement index computed for the NOSGER, BRSD and CDS did not
correlate with the stage of dementia (MMSE). This result suggests that similar
treatment effects can be reached in very mild, moderate and severe dementia.
Medical services often expect, that, if at all, only mild dementia patients can benefit
27
from rehabilitation programmes. We have found, however, that even in the severe
stages of dementia one can discover some possibilities by which to guide a patient to
his familiar self-feeling: with some dance steps, with a favourite melody or with
nature impressions, depending on the patient's individual preferences, biography and
remaining competence. In the later stages of dementia non-verbal forms of
communication and experiences are of great importance. Additionally, the behaviour
and affect of a patient depend to a considerable degree, even in the later stages of
dementia, on the competence of a caregiver and can be influenced by support for
the caregiver.
Patients with early dementia and caregivers are afraid that confrontation with the
course of the disease, especially in a residential setting which includes patients with
severe dementia, is more likely to increase than reduce the depression. Appropriate
psychological help in coping with the progressive cognitive decline can however
support the patient and integrate the confrontation experience into the coping
strategies. Treatment programmes for patients in different dementia stages require
further development.
The next question is the influence of medical treatment on the patients' improvement
at follow up. The subgroup of patients receiving antidepressant and/or neuroleptic
medication (PT group) showed more advanced dementia (lower mean MMSE) and
more affective and behavioural disturbances (higher CERAD scores) at both pre-
treatment and follow up. This last result is consistent with what might have been
expected: patients treated with antidepressant and/or neuroleptic medication show
up with more psychopathological symptoms. An improvement (significantly lower
NOSGER, CERAD and CDS scores) could be demonstrated in both groups, which
28
suggests that the therapy benefit was not likely to be caused only by
psychopharmacological medication. The PT subgroup did not reach the level of the
PnT group (higher CERAD scores at follow up) which shows the limits of both
medical treatment and rehabilitation programmes for patients with more severe
affective and behavioural disturbances like fear or restlessness. Earlier studies have
shown that pharmacological interventions can be effective in the treatment of
psychiatric symptoms and disruptive behaviours in dementia patients but the
improvement is often only modest (Cummings & Knopman, 1999; De Deyn, 1999;
Defilippi & Crismon, 2000; Rabins, 1996). For optimal management of emotional and
behavioural problems an integration of nonpharmacological approaches can help
(Carlson, Fleming, Smith, & Evans, 1995; Forbes, 1998). Further studies are needed
to determine what affective and behavioural symptoms are therapy-resistant and
whether new therapy methods can help. It is interesting that in the present study the
differences between PT and PnT subgroups were evident on the BRSD but not on
the CDS. One explanation may be that the BRSD directly assesses
psychopathological ("psychiatric") symptoms, which may be more therapy-resistant,
whereas CDS evaluates depressive mood and depressive reactions which may be
easier to improve.
Medical treatment with acetylcholinesterase inhibitors varied according to the needs
of the particular patient. Most of the patients had already received donezepil or
rivastigmine for some months or years before admission, some patients received this
medication only after admission, and some (6 persons) were not receiving
acetylcholinesterase inhibitors because of side effects. The dose and the product
were changed after admission in some patients. Given this diversity, it is not possible
to evaluate the influence of the treatment with acetylcholinesterase inhibitors. The
29
improvement demonstrated in our patients is likely to be caused partly by
medication with donezepil and rivastigmine. A beneficial effect of cholinergic
therapies has been demonstrated for cognitive and non cognitive symptoms,
although cognitive improvement has been shown only in the initial phase of the
therapy (Levy, Cummings, & Kahn-Rose, 1999).
In the present study the evaluation of patients' behaviour and affect was based only
on caregiver reports. It is important to consider whether changes in caregivers' well-
being influenced caregivers' perception of patients. We found no correlation between
changes in caregivers' self reports (improvement index for caregiver outcome
measures) and reports about patients (improvement index for patient outcome
measures). No bias was identified in caregiver reports, although this does not
necessarily mean that none was present (see below for discussion of placebo
effects). In future research some additional measures of patients' behaviour and
well-being should be included, e. g. standardised behavioural observation.
Caregivers also reported an improvement in their own depression and mood. After
the treatment, caregivers felt less depressed and restless, and more relaxed
(significantly lower scores on CES-D and higher scores on 3 MDBF subscales; effect
size indicators of 0,43 to -0,71, Table 2). In agreement with other studies
(Baumgarten, Battista, Infante-Rivard, Hanley, Becker, & Gauthier, 1992; Clipp &
George, 1990; Schneider, Murray, Banerjee, & Mann, 1999; Wilz, Adler,
Gunzelmann, & Brähler, 1999) we found under pre-treatment conditions a large
proportion (48%) of caregivers with critically high depression scores (CES-D), which
were then significantly reduced (4 persons, 15%) at follow up. The results also reveal
a relationship between patients' affective and behavioural symptoms and caregivers'
30
well-being. Interestingly at follow up (but not at pre-treatment) the caregivers' well-
being (especially the depression score) seemed to depend only on patients strictly
psychopathological symptoms, as assessed with BRSD, and not on depression and
general decline as assessed with CDS and NOSGER. Additionally, caregivers of the
PT subgroup, with patients showing more psychopathological symptoms in terms of
BRSD both at pre-test and at follow up, also demonstrated higher depression scores
at follow up than caregivers of PnT patients. This suggest that therapy-resistant
caregiver depression can be induced by patients' therapy-resistant
psychopathological symptoms.
The preliminary results reported here require replication in further controlled studies.
The preliminary results support the effectiveness of the treatment programme, which
combines standard treatments with new methods and a new therapeutic approach in
a new setting.
The effectiveness of the programme will need to be proven in controlled studies. We
do not claim that the programme is generally superior to standard methods, which
are far less intensive and are delivered mainly in out-patient settings. What kind of
help the family needs depends on the individual problems and resources of the
family (Baier & Romero, 2000). We suggest, however, that a high proportion of
patients and of caregivers have psychological and/or psychiatric problems that can
be effectively treated.
In the absence of a control group there are only limited possibilities to determine
whether an observed improvement was a function of specific factors (e.g. specific
therapeutic interventions like art therapy or psychological support for coping with the
31
disease, stimulating social activities and medication) or rather of factors such as
statistical regression to the mean or placebo effects. Placebo effects could result
from the caregivers' expectation for improvement, demand characteristics (i. e., the
implicit pressure engendered by the situation for caregivers to behave in accordance
with what is expected of them), therapists' enthusiasm and support, the therapist-
caregiver alliance, and effort justification, i.e., the tendency to report positive
changes in order to justify the effort exerted. However, in addition to self-rated
distress, caregivers also reported patients' symptoms and a pattern of improvement
which can be interpreted as meaningful. As could be expected from Alzheimer's
disease patients, caregivers reported an improvement in patients' affect and
behavioural disturbances but not in memory and everyday functional ability
(significant pre- post-treatment differences on all outcome measures except the
NOSGER subscales "Memory", "IADL" and "Self-Care"). Additionally, caregivers'
perception of patients' memory problems as assessed with the NOSGER "Memory"
subscale correlated with MMSE score, which is an objective measure of patients'
cognitive decline (inclusive of memory). Finally, caregivers reported significantly
more psychopathological symptoms in the patients who were treated with
antidepressant and/or neuroleptic medication, which validates the caregivers'
reports. Taken together these results suggest that specific factors outperformed
placebo effects at least partially in the present study. Controlled studies are needed
to support the preliminary results presented here and to address hypotheses about
factors responsible for benefits as well as for therapy resistance. The concept of
Self-Maintenance Therapy allowed a prediction, that experiences which are in
accordance with patients self-structures and -processes support patients' well-being,
reduce psychopathological symptoms and facilitate social participation.
32
33
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Table 1: Pre- and post-treatment comparison of patient measures
43
pre-treatment follow up P* Effect size
Cornell-Scale
(n=41)
median (range)
mean (std. dev.)
10 (2-23)
9,8 (3,9)
5,5 (1-20)
5,1 (3,6)
< 0,001
1,2
CERAD Behavior Rating Scale
(n=38)
median (range)
mean (std. dev.)
35 (14-78)
37,1 (16,3)
20 (5-60)
23 (12,7)
< 0,001
0,87
NOSGER
“Memory”
median (range)
mean (std. dev.)
“IADL”
median (range)
mean (std. dev.)
“Self-Care”
median (range)
mean (std. dev.)
“Mood”
median (range)
mean (std. dev.)
“Social Behaviour”
median (range)
mean (std. dev.)
“Disturbing Behaviour”
median (range)
mean (std. dev.)
16 (9-23)
15,3 (3,9)
18 (9-24)
17 (3,9)
8 (5-18)
8,8 (3,4)
12 (5-18)
11,7 (3,2)
15 (8-24)
14,8 (4,7)
9 (5-15)
9,5 (2,6)
14,5 (8-22)
14,7 (3,9)
17 (10-23)
16,4 (3,9)
8 (5-17)
8,8 (2,8)
11 (5-20)
11 (3,6)
13 (5-21)
13,5 (4,8)
8 (5-15)
8,3 (2,6)
n.s.
n.s.
n.s.
n.s.
0,01
0,001
0,15
0,15
0
0,21
0,27
0,46
* Wilcoxon Test
Higher values on the Cornell Scale (maximum 38) indicate more depressive symptoms.
44
Higher values on the CERAD-Scale (maximum 160) indicate more psychopathological symptoms.
Higher values on the NOSGER subscales (possible range: 5-25) indicate more disturbances in
everyday life.
45
Table 2: Pre- and post-treatment comparison of caregiver measures
pre-treatment follow up P* Effect size
CES-D-Scale (n=27)
median (range)
mean (std. dev.)
22 (2-40)
20,2 (11,2)
9 (0-39)
12,2 (9,9)
< 0,001
0,71
MDBF- “good vs. bad
mood“
median (range)
mean (std. dev.)
MDBF-“alertness vs.
tiredness“
median (range)
mean (std. dev.)
MDBF-“rest vs.
restlessness“
median (range)
mean (std. dev.)
29,5 (10-40)
28,8 (7,8)
25 (8-37)
25,8 (7,8)
27 (8-40)
26,5 (8,3)
35 (10-40)
32,2 (6,9)
31 (9-40)
29,7 (8,3)
32 (10-40)
30,1 (7,7)
0,01
0,01
0,01
0,43
0,5
0,43
*Wilcoxon Test
Higher values on the CES-D (maximum 63) indicate more depressive symptoms.
Higher values on the MDBF-subscales (possible range: 8-40) indicate better mood states.
46
Acknowledgements
The authors would like to thank L. Clare and R.T. Woods for providing helpful
comments on a previous draft of this paper.
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