Challenges With Manual-Based Multimodal Psychotherapy for People With Alzheimer’s Disease

Abstract

Earlier detection of dementia requires increased knowledge of how to help people in the early stages of dementia. However, few studies have focused on how psychotherapy should be adapted to improve the outcome of therapy for people with Alzheimer’s disease. The aims of the present study were to identify and to explore possible obstacles encountered during the use of manual-based psychotherapy for people with early-stage Alzheimer’s disease. The study found that individual adaptations to the treatment manual were necessary, particularly the modification of memory aids in order to adapt them to patients’ functional level and previous experience with modern technology. In addition, caregivers were essential for both treatment and homework completion, while reduced awareness constituted an obstacle for adherence to the manual.

Introduction

Dementia is considered to be one of the largest global health issues today. The number of people diagnosed with dementia is expected to double every 20 years, and the estimate for year 2030 is a staggering 65.7 million people. ¹ With the development of advanced assessment methods and, consequently, earlier diagnosis of dementia, there is an increasing need for effective therapeutic interventions to enable people diagnosed with dementia to deal with the psychological and practical challenges associated with the disorder. Since currently available drug treatments are symptomatic, with sparse and short-term effects, ^2,3 there is an increasing interest in psychosocial approaches that support people with dementia and their families, stabilize subjective well-being, and, if possible, delay the disease process. Based on findings from other degenerative diseases, ⁴ psychotherapeutic interventions that include the ability to process the loss of cognitive function and concomitant depression may be promising.

Research on psychotherapy in people with mild to moderate Alzheimer’s disease (AD) has yielded various insights. Three types of interventions have been demonstrated to hold promise: (1) cognitive rehabilitation, with beneficial effects on memory function and mood, ^{5 –7} (2) reminiscence therapy, which reduces depression and increases well-being and autobiographical memory, ⁸ and (3) cognitive–behavioral therapy, which significantly reduces depression in people with mild AD living at home with their caregivers. ⁹

Due to the wide range of cognitive impairments, behavioral, and mood symptoms, systematic reviews on patients with AD have indicated that interventions should be tailored to enable the patient to focus on individual problems ¹⁰ and should consist of a multimodal treatment plan. ¹¹ According to other researchers on patients and caregivers with AD, therapies are more effective if the caregiver is involved in the process. ^9,12

Most studies usually focus on one treatment modality. In contrast, a recent randomized controlled trial conducted in Germany, the Cognitive Rehabilitation and Cognitive-behavioral treatment for early dementia in Alzheimer disease (CORDIAL) study, combined cognitive rehabilitation, cognitive behavioral therapy, and reminiscence methods in the intervention for patients with AD. ¹³ The intervention group demonstrated improvements in quality of life and treatment satisfaction (for both the patient and caregiver), as well as a significant reduction in the depressive symptoms of female participants ¹⁴ ; however, no effects on activities of daily living (ADLs), one of the primary outcome measures, were discerned. This lack could have been due to factors related to the therapeutic approach or the sensitivity of the ADL scale that was used to capture change and substantial variations in the expression of AD symptoms.

Patients vary in terms of age at onset of AD, stage of illness, premorbid intellectual function, level of education, neuropsychiatric symptoms, and comorbidities. ¹⁵ These factors may considerably diverge during the course of the disease, even in people with similar symptoms at onset. Individualized treatment is therefore recommended. ¹⁰ However, multicenter randomized controlled trials require structured manuals, although this requirement can be perceived as stringent and preventing the flexibility that may be necessary to achieve an individualized approach. Interventions for people with dementia highlight the use of a manual while at the same time tailoring the therapy to each patient, for example, by individualized goal setting and the use of personalized worksheet for the patients. ^16,17 Nevertheless, the balance between following the manual and adjusting the therapy to the patient is considered demanding, as people with dementia are a heterogeneous group. ¹⁵ Therefore, the aims of this study were to explore the challenges that therapists may meet when performing manual-based psychotherapy in people with mild AD in order to reduce depressive symptoms and to determine how to adapt the approach to meet the needs of patients and their caregivers within the framework of cognitive behavioral therapy and cognitive rehabilitation. To the best of our knowledge, no previous studies have explored this in a multimodal approach for mild AD.

Methods

Qualitative Case Study

To study the utilization and applicability of structured manuals when performing psychotherapy in people with AD, it is necessary to conduct an in-depth exploration of the therapeutic process. As case studies allow in-depth exploration of complex issues, ^18,19 the method is considered to be useful for studying phenomena for which there is a lack of knowledge, such as within the field of psychotherapy for AD. The use of qualitative data enables a description of the therapeutic process that may capture challenges associated with the level of cognitive dysfunction and neuropsychiatric symptoms that are difficult to grasp with quantitative data.

To illuminate our results from different perspectives, this qualitative approach was supplemented with quantitative data from cognitive assessments, interviews with participants, and self-reported responses to questionnaires.

Quantitative Measures

Patient cognitive status was screened with the Mini-Mental State Examination (MMSE) ²⁰ in order to gain a rough estimate of the current level of cognitive functioning. Psychological symptoms were self-reported by patients and caregivers by the Hospital Anxiety and Depression Scale ²¹ for which a score above 8 indicates significant anxiety and depressive symptoms. ²² Client Satisfaction Questionnaire-8 was ²³ completed by patients at the end of the intervention to assess satisfaction with their therapy, while caregivers completed the overall burden with the Relatives’ Stress Scale. ²⁴

Data Collection

To ensure thorough understanding and triangulation of the phenomenon under study, data were collected from multiple sources. ¹⁸ Written field notes were completed after every session by the therapist and included judgment of the patient’s motivation and insight as well as the therapist’s adherence to the manual. Written in-session worksheets and between-session homework materials of patients were copied to monitor adherence with the therapy. Quantitative data were collected through standardized questionnaires and measures, which were assessed by trained raters before and after the intervention. The patients and caregivers in this study were discussed with 5 other therapists and researchers who were familiar with the intervention.

Participants

The criteria for inclusion were diagnosis of AD within the past 12 months (consistent with International Classification of Diseases, Tenth Revision research criteria), ²⁵ an MMSE score of 20 or above, mild depressive symptoms (defined as a score of 5 or above on the Montegomery and Aasberg Depression Scale, ²⁶ and living at home with regular day-to-day contact with a family caregiver. Exclusion criteria were ongoing psychotherapy and severe somatic or psychiatric comorbidity that would interfere with their ability to cooperate with the intervention program. The participants in this study came from the Memory Clinic, Oslo University Hospital, Norway. All patients who continuously fulfilled the inclusion criteria were asked to participate. The 3 participants in this study took part in the pilot phase of the intervention study using a version of the CORDIAL manual translated from German to Norwegian. We chose these 3 patients because they are assumed to represent typical patients with AD who are referred to a Norwegian memory clinic in terms of socioeconomic status, cognitive function, and depressive and anxiety symptoms. The selected cases represent male and female participants, various age-groups, and early as well as late-onset dementia. A summary description of the participants appears in Table 1.

Table 1.

Patient Characteristics With Baseline and Outcome Data.

Patient Characteristics	Annie	Christian	Mary
Age	59	66	77
Sex	Female	Male	Female
Diagnosis	AD, early onset	AD, mixed type	AD, late onset
Marriage status	Divorced	Married	Married
Years of education	10	10	8
Patient baseline and outcome data
MMSE pre	27	23	20
MMSE post	26	21	22
HADS pre	21	10	8
HADS post	11	9	1
CSQ-8 post	31	26	30
Carer baseline and outcome data
RSS pre	12	18	36
RSS post	10	18	26
HADS pre	10	13	11
HADS post	8	13	7

Abbreviations: AD, Alzheimer’s disease; MMSE, Mini-Mental State Examination (maximal score 30, higher value indicating higher cognitive function); HADS, Hospital Anxiety and Depression Scale (maximal score 21; higher value indicating higher anxiety and depression); CSQ-8 = Client Satisfaction Scale (maximal score 32; higher value indicating higher treatment satisfaction); RSS, Relatives’ Stress Scale (maximal score 60; higher value indicating higher burden).

Description of the Treatment

The intervention was based on the German manual for the CORDIAL study ^13,27 but was modified for Norwegian language and culture. ²⁸ The changes made to the original manual consisted of merging the first 2 sessions to 1 session, as the caregiver was included in the first session to give patient and caregiver the same information about the treatment. Also, as the main goal of the therapy was to reduce depressive feelings, the Norwegian manual found it appropriate to complete the module focusing on how to treat depression by pleasant activities before the module focusing on memory aids. The Norwegian version consisted of 11 sessions of modules with specific topics (Table 2). Every other session was conducted with the patient alone; the primary caregiver participated in the other sessions in order to aid the transfer of the patients’ newly learned strategies into everyday life and to improve caregiver cooperation.

Table 2.

An Overview of the Intervention.

Module 1	Introduction
First sessiona	Introduce the program and identify treatment goals
Module 2	Pleasant activities
Second session	Identify and plan pleasant activities
Third sessiona	Realize planned pleasant activities
Module 3	Memory aids
Fourth session	Introduce memory aids
Fifth sessiona	Establish functional memory aids
Module 4	Daily routines
Sixth session	Review current memory routines
Seventh sessiona	Establish daily memory routines
Module 5	Reminiscence
Eighth session	Introduce biographical work
Ninth sessiona	Establish biographical material
Module 6	Closing Module
10th session	Review the program and prevent relapse
11th sessiona	Closing session

^aBoth the caregiver and the patient are participating in the session.

The cases described here were conducted by a female psychologist trained in cognitive behavioral therapy and with experience with AD. She received training in the manual-based intervention prior to the intervention and underwent regular supervision during the intervention by a therapist experienced with the intervention.

Ethics

This study was approved by the Regional Committee for Ethics in Medical Research in South-Eastern Norway (Reg.no 2012/1943/REK soer-oest C). Oral and written informed consent was obtained from patients and caregivers before they participated in study-related procedures. Written consent for publication was obtained from the patients, and the cases were made anonymous.

Results

Initial and outcome scores are summarized in Table 1. The cases are described in more detail subsequently.

Case 1

“Annie” is a 59-year-old woman who lives independently in her own home. She is divorced, but for the past 5 years, she has had a new companion who serves as her primary caregiver (Table 1). She reported memory difficulties such as aphasia and trouble remembering names and groceries she wanted to purchase. The memory difficulties made her frustrated, sad, and she experiences feelings of hopelessness. She reported being very motivated to participate in the treatment program.

The intervention was completed in accordance with the manual, it focused on pleasant activities, memory aids, and reminiscence techniques (Table 2). Of special interest were the sessions that focused on memory aids. To remember which groceries to buy, Annie suggested that she could use a smartphone grocery application, as she was confident using her smartphone as a tool. She completed this as a homework assignment, and in the next session, she confidently demonstrated her use of the grocery-list application.

The sessions with reminiscence modules were a challenging aspect of the intervention. Annie had earlier as caregiver completed a similar exercise with her father, who had dementia. The task brought up memories of that time with her father and the severity of his disease, so in this way the reminiscence modules became sensitive for her. Also, when telling stories from her life, Annie mentioned examples from her previous marriage. It was not easy for her new life partner to listen to this discussion. The therapist explained to them that it was important to integrate and accept all of Annie’s lifelong experiences in this life-review exercise. In the end, these sessions generated good memories and mood for both Annie and her caregiver. At the end of the treatment, Annie reported that she was satisfied with the treatment and that her mood was improved (Table 1).

Case 2

“Christian” is a 66-year-old man who lives at home with his wife (Table 1). She is his primary caregiver and she participated in every other session.

The intervention was only to some extent completed according to the manual. The first session, in which problems and goals for the treatment were to be established, was challenging. Christian stated that he had no problems. He was aware of the diagnosis of AD but claimed that his problems were not severe. However, according to his wife, his ADL function had deteriorated and he forgot appointments, forgot to eat if she was not at home, could no longer pay his bills, and had lost interest in most activities and people around him. He spent most days at home, lying on the couch and watching television. Christian confirmed that he spent many hours on the couch but he did not see this as a problem. His view, that he had no problems, was consistent throughout the intervention. When the focus was on pleasant activities, Christian reported that he did not want to do any activities, and when discussing memory aids, he stated that he did not need a calendar because he no longer had appointments. The therapist examined this issue further with open-ended questions, seeking to explore and resolve whether there was ambivalence in the patient’s representation of his lack of problems related to the disease. Although it was not part of the manual, the therapist used motivational interviewing, an approach that is defined as “a collaborative, person-centered form of guiding, to elicit and strengthen motivation for change.” ^{29 (p.137)} However, this approach had no effect on Christian, as he still insisted that he had no problems in his everyday life.

The reminiscence module served as the turning point in the intervention. Christian spoke vividly about his business and work-related travels, and seemed to really enjoy himself during the session. His wife supported this enthusiasm and suggested that she could have their photo albums easily available in the living room, so that Christian could look at old photos during the day when she was at work. Christian said he saw no point in doing this. Nevertheless, his wife moved the photo albums into the living room, but it is uncertain whether he looked at the albums when he was home by himself. Thus, all topics in the intervention were completed, but no homework was finished. However, Christian reported a high client satisfaction (Table 1).

Case 3

“Mary” is a 77-year-old woman who lives at home with her husband who serves as her primary caregiver (Table 1). In the first session, treatment goals were established according to the manual. She had no suggestions for treatment goals. However, exploring Mary’s daily routines with her caregiver revealed that she struggled with simultaneously using 3 different calendars. Also, Mary was very anxious when her husband was away from home, so another treatment goal became to find activities with which to distract herself when her husband was occupied outside the house.

Mary reported that she had no problems with pleasant activities and that she kept herself busy. However, her husband did not agree. He explained that Mary mainly watched television and met with friends only occasionally. He suggested that he could arrange for a neighbor to come over once a week while he went to the gym. Mary agreed to this and had no problems following up once the weekly routine was established. Also, Mary wanted to take up an earlier hobby: painting. To be able to paint, she needed her husband’s help in placing the painting equipment at the dining table. Thereafter, she could easily keep herself occupied and less anxious when her husband was running errands.

The sessions focusing on memory aids were also notable. Mary had trouble writing down new appointments, and she could not find the correct date. The first thing she realized was that it would be better for her to use just 1 calendar, and she suggested trying to use a wall calendar. Mary had previously been anxious that they would forget appointments. Therefore, the importance of establishing the routine of writing down new appointments as soon as possible was carefully explained. This strategy was monitored over a few weeks and worked well.

Mary’s husband participated in every other session. He also joined the last 10 minutes of Mary’s individual sessions. This activity was not part of the original protocol in the manual but providing the caregiver with a summary of the session helped the couple to incorporate the newly learned strategies into their lives and complete the homework assignments. By the end of the intervention, Mary reported a high client satisfaction (Table 1).

Discussion

The present study examined the utilization of a structured treatment manual when conducting therapy with AD. Although the therapist completed all the elements in the intervention according to the revised Norwegian manual, it was necessary to employ some adjustments to meet individual needs. Annie (case 1) demonstrates the importance of adjusting the manual for modern memory aids, even though this was not explicitly mentioned in the manual. However, it is unlikely that this modification would have been appropriate for Mary (case 3) because she reported having problems with technology. This observation highlight that the manual must be tailored to each patient’s background, individual functioning, and previous experience in accordance to previous research, which highlight the need to adjust the intervention to people with dementia. ^16,17 Also, reports demonstrate that a too strict application of a manual-based approach can rupture the alliance between patient and therapist, which is associated with a weaker working alliance ³⁰ and poorer outcome. ³¹

Another important finding is that anosognosia, a “lack of awareness of impairment in activities of daily life [ADL] or about neuropsychological deficits,” ^{32 (p.719)} which was evident with Christian (case 2), may hinder treatment adherence to the manual. Christian was difficult to engage in the treatment. The use of motivational interviewing to explore his motivation had no influence on Christian’s motivation; an important principle of motivational interviewing is that the change should be elicited from the patient, not imposed by the therapist or caregiver. ³³ In this case, the therapist and the caregiver wanted Christian to change, while Christian claimed not to have any problems and expressed a wish for the “status quo.” Thus, anosognosia seemed to have hindered adherence, in terms of that he was not motivated for change, which in turn may explain the sparse benefit of the therapy in terms of depression and anxiety (Table 1). This observation is consistent with reports that people with AD who demonstrate anosognosia report fewer memory difficulties ³⁴ and experience fewer treatment gains. ^34,35

Depression is another possible explanation for Christian’s lack of initiative and uncommitted attitude. However, the clinical impression was that he was not depressed; rather, his behavior was considered to represent a mixture of anosognosia and apathy, which is common in persons having AD. Apathy consists of diminished goal-directed behavior and cognition ³⁶ and can occur in the absence of depression and thus represent an obstacle to commitment in therapy. ³⁷ These preliminary observations suggest that patients with AD should be screened for anosognosia and apathy before they are considered for this kind of psychotherapy. Possibly, multisensory stimulation could be a more suitable therapy option, as a systematic review demonstrates that multisensory stimulation reduces apathy in the later stages of dementia. ³⁸

Another important finding is that it is possible to employ this manual-based intervention with little support from a caregiver as seen in the case of Annie (case 1). This illustrate the heterogeneous nature of this patient group; Annie lived independently, had a high cognitive functioning (Table 1), and completed all the homework by herself, while in the cases of Christian and Mary, the caregivers participation in the treatment was essential for remembering the appointments and homework completion. Based on these observations, it is important to allow for some flexibility of the involvement of the caregivers. Nevertheless, we do recommend, in accordance with research on people with AD, the involvement of caregivers, ⁹ since the disease progress over time. However, in the case of Christian (case 2), the caregivers’ presence did not increase motivation, adherence, or homework completion, mainly due to the anosognosia regarding his memory difficulties. Thus, although caregiver involvement is important for the completion of therapy, the current study indicates that patient motivation and disease awareness are even more important for ensuring treatment adherence.

Additionally, this study have shown that reminiscence sessions could be challenging for the caregiver and the patient if the patient focuses on memories from the past that do not involve the present partner. Annie (case 1) talked about her previous marriage, which is common for people with AD; their capacity to remember new information declines, while their long-term memory remains intact for a longer period of time. This situation could be challenging for a new partner, suggesting that it is important to encourage the patient and caregiver to accept the past and to integrate both negative and positive life events. If the patient focuses primarily on negative memories, cognitive techniques could be used to illustrate the importance of positive reframing. Based on our experience, we recommend that clinicians employ reminiscence as a platform for communication. This is consistent with previous reports that reminiscence therapy can improve the relationships between people with dementia and their caregivers. ^{39 –41} Furthermore, as seen in the case of Christian (case 2), reminiscence therapy fostered a focus on strengths in the patient. This was the only session Christian seemed to enjoy, possibly because reminiscence is more pleasant than focusing on the challenges and problems associated with AD.

The patients were the main focus of this intervention, but their caregivers participated in every other session (Table 2). This study found this successful, as it allowed the caregivers to take part in the intervention, but at the same time not be overinvolved by letting their partner participate by themselves. However, it might be necessary with involvement of the caregiver in every session in the later stages of AD. Furthermore, in this study, the caregivers reported that it was valuable for them to receive information on how to deal with dementia symptoms, which could explain the improvements in caregiver burden (Table 1). Research on caregiver burden has uncovered mixed results; some studies detected some effects on caregiver burden, ⁴² while other studies reported no effect on the burden of care. ⁴³ Thus, more research is needed on the effects on caregivers of people with AD, and a larger sample of caregivers will be necessary to determine whether the short-term intervention employed here decreases caregiver burden.

One limitation of this study was that the first author was the therapist and performed all therapeutic work. On the other hand, this study design means that this therapist knows the cases and the process well. Quantitative measures and the patients’ own perspectives (as revealed in-session and via homework) were compared with the therapist’s perspective on the treatment sessions; thus, information from different sources was compared. This information was discussed with therapists who were experienced with the intervention employed here. Our investigation is also limited by the small number of patients, which makes it difficult to generalize our conclusions to larger populations.

Conclusion

This study has demonstrated that it is possible to conduct manual-based therapy in people with mild AD, and patients reported a high degree of satisfaction with the program. The main findings were that the manual needed to be adjusted to each patient’s background, individual functioning, and previous experience with modern technology. Also, apathy and anosognosia hindered treatment adherence, while caregivers were essential for both treatment and homework completion. Reminiscence sessions needed to integrate both negative and positive life events and fostered a focus on patient strengths. When performing psychotherapy with persons with AD, it is important to allow for flexibility of the manual to fit the individual needs of the patients and their caregivers.