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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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Barbara Romero

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Michael Wenz

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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]

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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.

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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

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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

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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.

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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

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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

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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

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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,

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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

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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

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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

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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

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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 …