Assignment

Self-maintenance therapy in Alzheimer’s disease

Barbara Romero1,2 and Michael Wenz1 1Alzheimer Therapiezentrum der Neurologischen Klinik Bad Aibling, Germany

2Klinik und Poliklinik für Psychiatrie und Psychotherapie der Technischen Universität München, Germany

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 pretest–posttest 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 psychopathologica l symptoms, which can be seen as directly beneficial for patients. Following treat- ment, caregivers also felt 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 that are in accordance with patients’ self-struc- tures and processes support patients’ well-being, reduce psychopathologica l symptoms, and facilitate social participation.

INTRODUCTION

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 neuropsychologica l functions and daily activities, such as “spatial orientation” or “naming” abilities. Rehabilitation programmes grounded on this traditional approach aim at facilitation of basic functions, for example, facilitation of memory perfor- mance or attention. However, interventions designed to improve basic

Correspondenc e should be sent to Barbara Romero, Alzheimer Therapiezentru m der Neurologischen Klinik Bad Aibling, Kolbermoorerstr. 72, D-83043 Bad Aibling, Germany. Email: [email protected] .

The authors would like to thank L. Clare and R.T. Woods for providin g helpful comments on a previous draft of this paper.

Ó 2001 Psychology Press Ltd http://www.tandf.co.uk/journals/pp/09602011.html DOI:10.1080/09602010143000040

NEUROPSYCHOLOGICAL REHABILITATION, 2001, 11 (3/4), 333–355

neuropsychologica l functions have not really proved beneficial for patients with AD. Neuropsychologica l research has revealed that the relevance of func- tional training for dementia patients has been limited (Bäckman, 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—the self as an intra-individual system, and 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, 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. According to Cohen and Eisdorfer (1986, p. 22): “Every few months I sense that another piece of me is missing. My life, my self, are falling apart. Most people expect to die some day, but who ever expected to lose their self first.” When it is too difficult to integrate new experiences into prior self- structures, a patient reacts with shame, depression and/or aggression. There- fore, 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 impor- tant 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, 1979). Accordingly it can be predicted that Alzheimer patients will use their cognitive competence more effec- tively if self-structures are better integrated and self-processes are not overtaxed.

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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 experi- ences 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 sometimes feel 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 with- drawal are very common. These symptoms are partly caused by incompati- bility between patients’ actual experiences on the one hand and patients’ self-based expectations and preferences on the other. 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 psycho- pathological symptoms.

The self is a dynamic system that forms itself throughou t 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.

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. People providing social support themselves have to be supported. Caregivers in particular need help and inte- gration within wider family networks as well as within other social structures. Psychosocia l 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 programme designed to provide counselling and social support were less depressed and more likely to care for dementia patients at home (Mittelman et al., 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

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psychotherapy —modified in accordance with the primary aim of SMT (for a comparison of SMT and established methods, see Romero & Eder, 1992). There are four main components of SMT: psychotherapeuti c support, self- knowledge training, facilitation of satisfying everyday activities, and vali- dating communication in caregiving.

Psychotherapeutic support

In recent years support groups focusing on education and sharing of experi- ences about development of coping strategies as well as individual psycho- therapeutic interventions have been recognised as valuable for persons in the early stage of dementia (Bauer, 1998; Hirsch, 1994; Petry, 1999; Radebold, 1994). In the Alzheimer Therapy Centre (ATC) programme, therapists aim to help patients to understand the disease and to maintain a sense of meaning- fulness. 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 opportunitie s 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 to 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 him 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 possibilitie s for

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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 (Hofmann, Hock, Kuhler, & Müller-Spahn, 1996). In the future computers will undoubtedl y 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 video- tapes can also be used for external memory storage.

Step three. The patient reviews the chosen components of self-related knowledge , supported by the external memory records. Systematic reminis- cence with these memories is at first practised with therapeutic assistance. The family is instructed to continue the reminiscence later on at home with the assis- tance of the caregiver. In this way the central contents of self-related knowl- edge 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. Psychosocia l stress as well as a low level of satisfying activities and experi- ences are indicated as risk factors for additional problems in the course of the disease (Bauer, 1994; Broe et al., 1990; Friedland et al., 1996; Motomura et al., 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 looked for interesting subjects (with obvious engagement and enjoyment) and his 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 such as walking, housework, dancing, visiting a church or meeting with other people can be integrated in a satisfying routine. Studies show that intervention

THERAPY IN ALZHEIMER’S DISEASE 337

focusing on enrichment of the activity spectrum is supportive to both patients and their carers (Aldridge, 1994; Beatty, 1999; Palo-Bengtsson, 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 understand better patients’ changed behav- iour 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.

THE ALZHEIMER THERAPY CENTRE (ATC)

The ATC 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 4-week residential treatment programme for patients with dementia and their caregivers. The dementia syndrome with multiple, progressive cogni- tive 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 ATC, lies in the interdisciplinary planned preparation of each individual family for life with the disease at home (Baier & Romero, 2000). The best place to provide a treatment programme of this kind is in a specialised centre setting. There is a need for out-patient, day and residen- tial 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 promising. Brodaty, Gresham, and Luscombe (1997) demonstrated in a prospective, randomised controlled study with an 8-year follow-up that a structured memory retraining and activity programme 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 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’ psychopathologica l symptoms like depression, apathy,

338 ROMERO AND WENZ

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 compe- tence in accompanying the patient, and to support their social integration.

Treatment groups

One group consisted of 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).

The other group consisted of caregiving relatives. Over 80% of patients with dementia are cared for by 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. Integration of caregivers lies at the heart of the treatment programme.

Treatment programme

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 psychopathologica l problems. All patients with AD who tolerate acetylcholinesterase inhibitors are 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). Psychopathologica l symptoms like agitation, hallucinations or depres- sion are treated medically with antidepressants and/or neuroleptics.

Rehabilitation programm e for patients. The intensive therapy programme (approximately 20 hours per week) adopts an interdisciplinary approach which is tailored to the individual in the light of the medical, neuropsychological , and psychosocia l 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 treat- ment 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

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of dementia receive psychotherapeuti c 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-tailore d 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 et al., 2000; Woods, 1996).

Physical 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.

Physiotherapy and physical treatment. If required, patients and care- givers can receive massage, fango, lymph drainage, electrotherapy, and physiotherapy.

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 their competence in accompanying the patient in a way that is anticipated to have a positive effect on the self of the patient. Additionally, therapists provide psychotherapeuti c 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 caregiving. Caregiver interventions include an education programme in the form of individual and family sessions and support groups as well as psychotherapeuti c support in individua l 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 facilities of the Neurological Hospital are

340 ROMERO AND WENZ

used. In emergencies and other special situations medical and nursing support is obtained from the Neurological Hospital.

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 Neuro- logical Hospital. Up to 15 couples can be accommodated in 15 two-room apart- ments. 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 are covered by patients’ health insur- ance 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 psychoeducationa l treatment) is free; that is to say, the ATC covers the caregivers’ costs.

SHORT-TERM EFFECTS OF THE ATC PROGRAMME

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 psychopathologica l 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 pretest–posttest design was used. In this preliminary study there were no resources available to support a more powerful design using a control group.

THERAPY IN ALZHEIMER’S DISEASE 341

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 diag- nosis of Alzheimer’s disease or mixed dementia (Alzheimer’s disease with cerebrovascular components) according to ICD-10 criteria, and their care- givers, who had completed the treatment programme at the ATC between May 1999 and April 2000. Patients with other forms of dementia and patients who completed a programme shorter than 3 weeks (the standard duration of treatment is 4 weeks) were excluded. This resulted in a sample of 43 patients and 43 caregivers. For some people, not all data were available, and con- sequently 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, Folstein, & McHugh, 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 individua l 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.

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

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during treatment. All but these three patients were living 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 psychopathologica l 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 et al., 1995) was administered to the caregiver in a semi-structured interview to assess behavioural disturbances and other psychopathologica l symptoms in the patients. Symptoms like depression, affective lability, apathy, irritability, agitation, aggression, psychoti c features and other psychopathologica l symp- toms 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 et al., 1991), an instrument which is often used in evaluation studies with dementia patients.

The scores of the 30 items are summarised into six subscales (Memory, Instrumental activities of daily living (IADL), Self-care, Mood, Social behav- iour, 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 assess depression in the caregiver group (Radloff, 1977; German version: Hautzinger & Bailer, 1993).

Mehrdimensionaler Befindlichkeitsfrageboge n (MDBF) (Steyer, Schwenk- mezger, Notz, & Eid, 1997, Multidimensional Mood States Questionnaire). Mood components were assessed with this well-validated German questionnair e for the assessment of momentary mood states. The MDBF includes 24 bipolar items which can be summarized into three 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.

Data were available for 27 participants on the CES-D and for 40 participants on the MDBF.

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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 the two subgroups of patients, Wilcoxon Signed Rank Tests were used. 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 differ- ence 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 signifi- cantly lower scores at follow-up (Table 1). Additional analyses indicated the clinical relevance of high depression scores at pre-treatment as well as of reduc- tion 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, and 15 (36.5%) with a score higher than 11. At follow-up there 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 psychopathologica l symptoms at follow- up (Table 1).

Disturbances of social behaviour (NOSGER subscale Social Behaviour) and psychopathologica l symptoms (NOSGER subscale Disturbing Behaviour) were reduced at follow-up (z = –2.442, p = .05; z = –3.350, p = .001, respec- tively). 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

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Scale scores and CERAD Behavior Rating Scale scores similarly showed no correlation with patients’ age. The Cornell Scale score again showed no corre- lation 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 antidepres- sants on general treatment effects we compared the psychopharmacologicall y treated (PT, n = 17) and non-psychopharmacologically-treate d (PnT, n = 26) groups. In the PT group the mean MMSE score was significantly lower, and the BRSD score at pre-treatment and at follow-up was significantly higher. This suggests that the PT group included patients with more advanced dementia and with more affective and behavioural problems than did the PnT group.

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TABLE 1 Pre- and post-treatment comparison of patient measures

Pre-treatment Follow-up p* Effect size

Cornell Scale (n = 41) Median (range) Mean (SD)

10 (2–23) 9.8 (3.9)

5,5 (1–20) 5.1 (3.6)

< .001 1.2

CERAD Behavior Rating Scale (n = 38) Median (range) Mean (SD)

35 (14–78) 37.1 (16.3)

20 (5–60) 23 (12.7)

< .001 0.87

NOSGER (n = 38) “Memory”

Median (range) Mean (SD)

IADL Median (range) Mean (SD)

Self-Care Median (range) Mean (SD)

Mood Median (range) Mean (SD)

Social behaviou r Median (range) Mean (SD)

Disturbing behaviou r Median (range) Mean (SD)

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.

.01

.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. Higher values on the CERAD-Scale (maximum 160) indicate more psychopathologica l symptoms. Higher values on the NOSGER subscales (possible range: 5–25) indicate more disturbance s in everyday life.

NOSGER and CDS demonstrated no group differences. In both subgroups following treatment there were significant differences in the predicted direc- tion on CDS (PT: z = –3.417, p = .001; PnT: z = –4.294, p = .001) and on BRSD (PT: z = –2.667, p = .01; PnT: z = –3.637, p = .001). NOSGER global score changed significantly at follow in the PnT group (z = –2.421, p = .05) but not in the PT group (z = –1.227, p = .2).

To analyse the influence of factors like the age of patients, stage of dementia and medical treatment on treatment effects we calculated an improvement index (II) as a difference between pre-treatment and follow-up scores on outcome measures. There was no correlation between II and either age or MMSE scores. There was no difference in II in the PT and PnT groups.

Caregivers

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 individuals) 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 individuals).

Higher post-treatment scores on the subscales of the MDBF indicate better mood, lower mental fatigue and lower feelings of restlessness. Pre-post

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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 (SD)

22 (2–40) 20.2 (11.2)

9 (0–39) 12.2 (9.9)

< .001 0.71

MDBF (n = 40) Good vs. bad mood

Median (range) Mean (SD)

Alertness vs. tiredness Median (range) Mean (SD)

Rest vs. restlessness Median (range) Mean (SD)

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)

.01

.01

.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.

comparisons were statistically significant (Table 2; good vs. bad mood: z = –3.005, p = .01; alertness vs. mental fatigue: z = –3.102, p = .01; rest vs. restlessness: z = –2.878, p = .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).

Patients and caregivers

It could be expected that the 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 correla- tions between measures of caregivers’ well-being (three MDBF subscales and CES-D) on the 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 corre- lated only at post-treatment with CES-D scores. Additionally caregivers of patients who were treated psychopharmacologicall y (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-treat- ment 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’ psychopathologica l symptoms such as depression, apathy, agitation, or aggression and to facilitate a means of participation in life which fits the level of the patient’s 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.

The results from this study showed—as predicted—a consistent improve- ment in patients’ depression and in other psychopathologica l symptoms as assessed by caregivers reports on the questionnaire measures (Table 1).

THERAPY IN ALZHEIMER’S DISEASE 347

The effect size indicators were moderate to large. Even small reductions in depression and in other psychopathologica l 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 pro- portion of patients (24%) show mild depressive symptoms also at follow-up (pre-treatment: 63%) and a few patients (7%) even moderate depression (pre- treatment: 36%). This demonstrates that the treatment was beneficial for many but not all patients and further studies are needed to understand more about the factors that influence outcome and how therapy methods can be improved. Psychopathologica l 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.

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-professional s 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 slight tendency for patients with lower MMSE scores to have more psychopatho - logical symptoms, as assessed by the BRSD. The incidence of behavioural symptoms is reported to be highest in moderate and severe dementia (Reisberg et al., 1989). Patients’ depression (Cornell Scale) did not depend on the stage of dementia (MMSE).

348 ROMERO AND WENZ

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 from rehabilitation programmes. We have found, however, that even in the severe stages of dementia one can discover some possibilitie s by which to guide a patient to feel more like his or her usual self: with some dance steps, a favourite melody, or familiar landscape, depending on the patient’s individua l 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 the 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 depres- sion. Appropriate psychological help in coping with the progressive cognitive decline can however support the patient and integrate the confrontation experi- ence 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 consis- tent with what might have been expected: Patients treated with antidepressant and/or neuroleptic medication have more psychopathologica l symptoms. An improvement (significantly lower NOSGER, CERAD, and CDS scores) could be demonstrated in both groups, which suggests that the therapy benefit was not likely to be caused only by psychopharmacologica l 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 distur- bances like fear or restlessness. Earlier studies have shown that pharmacolog- ical 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 et al., 1999; Defilippi & Crismon, 2000; Rabins, 1996). For optimal management of emotional and behavioural problems an integration of nonpharmacologica l 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

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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 psychopathologica l (“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 patients) 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 treatment with acetyl- cholinesterase inhibitors. The 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 cogni- tive 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., stand- ardised behavioural observation.

Caregivers also reported an improvement in their own depression and mood. After treatment, caregivers felt less depressed and restless, and more relaxed (significantly lower scores on CES-D and higher scores on three MDBF subscales; effect size indicators of 0.43 to –0.71, Table 2). In agreement with other studies (Baumgarten et al., 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 care- givers with critically high depression scores (CES-D), which were then sig- nificantly reduced (4 caregivers, 15%) at follow-up. The results also reveal a relationship between patients’ affective and behavioural symptoms and care- givers’ 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 psychopathologica l 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

350 ROMERO AND WENZ

psychopathologica l 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 control- led studies, but they do 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 caregivers have psychological and/or psychiatric problems that can be treated effectively.

In the absence of a control group there are only limited possibilitie s to deter- mine 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 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 care- givers to behave in accordance with what is expected of them), therapists’ enthusiasm and support, the therapist–caregiver alliance, and effort justifica- tion, 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, care- givers reported an improvement in patients’ affect and behavioural distur- bances but not in memory and everyday functional ability (significant pre- to post-treatment differences on all outcome measures except the NOSGER Memory, IADL and Self-Care subscales). 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 psychopathologica l 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 hypothese s 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’

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self-structures and self-processes support patients’ well-being, reduce psycho- pathological symptoms, and facilitate social participation.

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Manuscript received October 2000 Revised manuscript received January 2001

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