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Self-maintenance therapy in Alzheimer's disease
Article in Neuropsychological Rehabilitation · September 2010
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Schön Klinik Bad Aibling
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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,
e-Mail: [email protected]
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.
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
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
"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
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
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
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
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.
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
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
this way the central contents of self-related knowledge can be continuously available
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,
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
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.
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.
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
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.
(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
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).
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
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 …