Music therapy and physical activity to ease restlessness in persons with #dementia by Herald Scholarly Open Access

Langhammer B, et al., J Clin Stud Med Case Rep 2018, 5: 051 DOI: 10.24966/CSMC-8801/100051

HSOA Journal of Clinical Studies and Medical Case Reports Case Report

Music Therapy and Physical Activity to Ease Restlessness, Irritability and Aggression in Persons with Dementia with Signs of Frontotemporal Lobar Degeneration Birgitta Langhammer , Mette Sagbakken , Kari Kvaal , Ingun Ulstein4, Dagfinn Nåden1 and May-Karin Rognstad1 1,2*

Department of Health, Oslo Metropolitan University, Oslo, Norway

Sunnaas Rehabilitation Hospital, Nesodden, Norway

Department of Public Health, Inland Norway University of Applied Sciences, Elverum, Norway 3

The Memory Clinic, Oslo University Hospital, Ullevål, Oslo, Norway

frontal lobe symptoms in institutional care. Primary outcome measure was the Brøseth Violence Checklist (BVC). Results: Four males and two females, mean age 84.3 years and their primary care persons (n=6) participated. The most prominent symptoms among the selected participants at baseline were confusion, irritability and verbal threats. The individual BVC total scores indicated significant improvements (p=0.03) with changes in scores between baseline to 8 at eight weeks from -2 to -11. The most prominent changes were registered in behaviors confusion (p<0.02), irritable (p=0.04) and boisterous (p<0.03). Discussion: A tendency toward improved behavior was observed, although compliance to a standardized therapy program over time was difficult. Health issues, comorbidities and the patients’ condition from day to day could influence the patients’ motivation negatively, as well as their opportunity to participate and thus jeopardize consistency in the intervention. Conclusion: The individualized music therapy combined with increased physical activity for eight weeks in this study indicated a change for the better in the behavior and anxiety levels of the participating persons who suffered from severe dementia. The implementation of a systematic combination of music and a physical activity program is feasible and the indications are that anxiety levels and restlessness are reduced. Keywords: Dementia; Exercise; Frontotemporal lobar degeneration; Music therapy; Physical activity

Introduction Abstract Aim: The purpose of this study was to evaluate whether a combined intervention of physical activity and music therapy could reduce restlessness, irritability and aggression among people with severe dementia. Methods: An exploratory design was used to evaluate a combined intervention of physical activity, music therapy and daily in- or outdoors walking. The interventions were systematically implemented for eight weeks. The target groups were persons with dementia with

*Corresponding author: Birgitta Langhammer, Department of Health, Oslo Metropolitan University, Box 4 St Olavs pl, 0130 Oslo, Oslo, Rehabilitation Hospital, Bjørnemyrveien 11, 1450 Nesoddtangen, Norway, Tel: +47 98604616; Email: Birgitta.Langhammer@oslomet.no Citation: Langhammer B, Sagbakken M, Kvaal K, Ulstein U, Nåden D, et al. (2018) Music Therapy and Physical Activity to Ease Restlessness, Irritability and Aggression in Persons with Dementia with Signs of Frontotemporal Lobar Degeneration. J Clin Stud Med Case Rep 5: 051. Received: April 04, 2018; Accepted: May 22, 2018; Published: June 07, 2018 Copyright: © 2018 Langhammer B, et al., This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Dementia is largely a disease of older people, but 2% of those affected are under 65 years of age. Frontotemporal Dementia (FTD) constitutes 10-20% of dementia in younger people (<65 years old) [1]. People with neuronal degeneration in frontal and temporal lobes demonstrate a decline in social conduct, apathy and loss of insight that is gradual and progressive [2]. It is estimated that 30 million people worldwide have a diagnosis of dementia, with an incidence of 4.6 million new cases annually [1,3]. Persons with dementia in residential care are often inactive due to institutional routines and the over-caring assistance of staff and this may lead to physical disablement [4]. To maximize potential for health and happiness, it has been suggested that person-centered non-traditional facilities outperform traditional facilities in potential opportunities for staff interactions and environmental engagement [5]. The effect of methods like cognitive training and rehabilitation in Alzheimer’s Disease (AD) and Vascular Dementia (VaD) are poor, whereas reminiscence therapy may reduce stress and improve the patient’s functional ability [6,7]. There is little evidence for effective interventions to maintain physical function and to mediate behavior changes [8,9]. The rare knowledge that does exist indicates that physical activity may reduce the subjective caregiver burden associated with care for persons with dementia and exercise may reduce negative affects in people with moderate to severe dementia, such as the degree of anxiety and depression [9,10].

Citation: Langhammer B, Sagbakken M, Kvaal K, Ulstein U, Nåden D, et al. (2018) Music Therapy and Physical Activity to Ease Restlessness, Irritability and Aggression in Persons with Dementia with Signs of Frontotemporal Lobar Degeneration. J Clin Stud Med Case Rep 5: 051.

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One of the goals in progressed dementia care is to reduce behavior that could indicate discomfort and mental distress. Another strategy used is music therapy, where the therapist seeks to reduce such symptoms and strengthen emotional regulation by using rhythm and music [11-13]. Music therapy has elements such as singing, movement /dancing to music, listening or playing musical instruments [14]. During singing the structure of the rhythm influences activation patterns and intensity of activation. The basic activity of simply singing rhythmic sequences activates the bilateral supplementary motor area, the premotor cortex, more distinct in the left hemisphere, left cingulate gyrus and right basal ganglia, and has been documented as stimulating hemispheric specialization [15]. In persons with dementia, there are indications that singing may encourage reminiscence and memories of the past as well as reducing anxiety and fear [16-20]. Studies that include music therapy have focused on persons with minor to moderate cognitive decline who are not institutionalized [21]. The results are promising, indicating that less anxiety and depression are experienced [21]. However, how and when to use music therapy to moderate behavior and facilitate performance is not clear. The use of music is described as the tacit knowledge of experienced staff and the strategies are usually neither described nor documented in medical care records [20]. An experienced author on this topic emphasized that the timing of musical interventions and the level of cognitive functioning is important; the more severe the dementia, the less improvement was seen [20]. In the present study, the focus is on promoting a combination of music therapy and physical activity with the goal of reducing restlessness, irritability and aggression in persons in institutional care, the development of whose disease indicates a severe stage of dementia with a mixture of symptoms including frontal lobe problems.

Materials and Methods The design was an exploratory study including a combined intervention for persons with severe dementia in an institutional special care unit.

Subjects and environmental context Persons diagnosed with dementia with signs of frontal lobe problems, who had lived for at least 6 months in a special care dementia unit in a nursing home, were the target for the study. Possible participants were identified by the institution’s department manager. The persons with dementia were Norwegian citizens, in total four males and two females, with a mean age of 85.5 years (Table 1). The participants had been educated to a higher or intermediate level, had all been married and 5 out of 6 had children and grandchildren. They were residents in the special care dementia unit at the nursing home due to irritable, boisterous and verbally and/or physically threatening behavior with a mean length of stay of 2.5 years. The diagnoses varied: 3 participants were diagnosed with AD and 3 with VaD, all with frontal lobe affection. The frontal lobe affection was the main reason for being in the special care dementia unit and for inclusion in the study (Table 1). In addition, the primary caretakers (n=6) with main responsibility for the care of the included persons with severe dementia (n=6) were recruited as informants. The primary caretakers were nurse assistants with formal education and with varying levels of experience. They represented a multinational team with backgrounds from Norway, Sri Lanka, Philippines and Ethiopia. J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

Participants

Mean

Age

84.3

Gender

female

male

female

male

N/a

Dementia type

AD1

VaD2

VaD

Additional morbidities (n)

6.2

LOS (yrs)

2.5

Table 1: For the total of 6 participants, age, type of dementia, gender, additional morbidities and Length of Stay in the institution [LOS]. Alzheimer’s disease = AD Vascular dementia = VaD

1 2

The nursing home was composed of two houses, each five stores high, situated in a densely populated area of the city, with no green areas for recreation. Consequently, there were limited opportunities for outdoor activities. The doors and elevator, within the building that housed the dementia department, were locked. In order to move about freely between the different wards a special code had to be used to unlock the doors. The wards with the special units for people with severe dementia were physically separated from the others, situated on different floors with locks between the floors, doors and elevators. Each ward had two wings with corridors of rooms for the residents, separated by the nurses’ quarters, elevators and rooms for recreation and dining in the middle.

Intervention A combination of physical activity, music and walking was systematically implemented in a regular schedule, for eight weeks, based on the available voluntary choices of music related activities in the institution. During the intervention, the participants were scheduled to do the activities and their primary caretakers were asked to implement music therapy in the activities of daily care, such as during morning care. In that way, this systematically implemented a combination of obligatory activities that differed from the usual voluntary activities in form and consistency. The goal was to release individual energy and to reduce restless, irritable, or aggressive behavior. The activities included different forms of Physical Activity (PA), music therapy and walking outdoors. Physical Activity (PA) PA was defined as any bodily movement produced by skeletal muscles that requires using energy, and which leads to energy consumption higher than that at rest, such as during sitting or lying in bed [22]. The PA sessions, led by a physiotherapist, were in standardized doses with frequencies of 2-3 times per week, and 30-45 minutes’ duration. The PA session mainly included activities or movements such as sitting and standing balance activities, stretching, strengthening, breathing exercises and different sport activities, with balls and other instruments. In total, each patient could participate 16-24 times. Music therapy Music therapy was defined as singing, listening, playing musical instruments, or moving/dancing while listening to music. The music was individually tailored to suit the participants’ taste in music. Volume 5 • Issue 2 • 100051

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Movements/dance were intended to enhance the individual’s own sense of rhythm and increase sensory input. An individual or group music session once a week, in total 45 minutes long and led by a music therapist, was also offered. This session included activities or movements such as singing, playing rhythmical instruments, moving to the music, or just listening to enhance relaxation. A music session could also be divided into smaller periods and used in combination with other daily activities such as while getting dressed, preparing for bathroom activities or combined with walking; these were led by the primary caretaker. Walking The walking exercise aimed to improve or maintain one or several components of physical capacity [22]. It was performed at preferred walking speed, indoors or outdoors. The out-and-about walking session was offered, by choice outdoors or indoors, for a total of 45 minutes/week together with a member of staff or if possible and desired a walking session by the patient alone. Outcome measures The primary caretakers were already familiar with the tests and the scoring of those tests. Consequently, only a short review of the outcome measures was necessary before the baseline tests to standardize the testing procedure.

Quantitative evaluations Brøset Violence Checklist (BVC) The BVC assesses the presence of six observable patient behaviours, namely whether the patient is confused, irritable, boisterous, verbally threatening, physically threatening and/or attacking objects [23-25]. A sum score of 0 indicates that the risk of violence is small; 1-2: the risk of violence is moderate, and preventative measures should be taken; while a sum score >2 indicates that the risk of violence is high, preventative measures should be taken and plans made to manage a possible attack. The reported discriminatory ability is good with a correct prediction rate around 85% [25]. The assessments were made at baseline and then daily for the eight weeks of intervention, by the primary caretaker. Neuropsychiatric inventory (NPI-Q) The Neuropsychiatric Inventory-Questionnaire [NPI-Q] is a clinical instrument for assessing behavioral and psychological symptoms in dementia [26]. It is cross-validated with the standard NPI to provide a brief assessment of neuropsychiatric symptoms in routine clinical settings [26]. The NPI-Q is adapted from the NPI [27], a validated informant-based interview that assesses neuropsychiatric symptoms over the previous month. The assessments were made by the primary caretaker at baseline. Registration The primary caretaker (nurse assistant) documented compliance to the program by recording the weekly activities in a logbook. J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

Descriptive data, such as age, gender, education, years spent in the dementia ward and additional morbidities, were collected from the institution’s own documentation system, GERICA.

Qualitative evaluations Semi-structured interviews with the primary caretakers were performed at baseline and at the end of the eight weeks of interventions. The interviews were approximately 40-45 minutes long. The purpose of the interviews was to get a description of the observed behavior in the persons with dementia and to interpret any possible subjective benefits of the intervention program [28]. The primary caretakers were also asked to what extent they believed the program and the activities had been helpful in meeting the challenges of daily care and whether there were any other strategies the primary caretakers had found useful in reducing the patient’s restless and sometimes violent behavior.

Analyses and interpretation Descriptive data is presented as raw data, in addition to mean and median, where appropriate. NPI at baseline was categorized according to symptoms, as present or not. BVC was presented as the total score for all items for each participant and the 8 weeks and as pre-, post intervention scores. We used the One sample Kolmogorov -Smirnov test, to test for normality in the sample. We continued with non-parametric tests because of small sample size, only 6 cases. Overall scores were analyzed with the Kruskal-Wallis test for differences in the whole sample at baseline. A non-parametric Wilcoxon signed rank test was used to evaluate the individual difference between pre and post intervention scores of the BVC with p<0.05 [29]. The semi-structured interviews were transcribed and the content analyzed as text. The analysis followed the following steps: • Reading the material to get an overall impression • Identifying units of meaning that represented observations done before and after the intervention and coding for these • Condensing and summarizing the content of each of the coded groups • Integrating the insights from the condensed meaning units into generalized descriptions that reflect apparently significant factors [30] The analytic focus was on how the primary caretakers described the participants with dementia before and after the intervention in view of observed restlessness, violent or inappropriate behavior and activity levels. The descriptions were analyzed in view of the theoretical constructs of music therapy and physical activity and discussed according to existing studies on the subject [28].

Ethics The project was submitted to the Regional Committees for Medical and Health Research Ethics (REK), but was considered to be outside the remit of the Act on Medical and Health Research and could, therefore, be implemented without the approval of the REK (ref. 2012/835/REK). The Norwegian Centre for Research Data (NSD) approved and registered the project in the year 2012. Volume 5 • Issue 2 • 100051

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The department manager of the institution identified possible participants and the next of kin were approached with information about the project, to invite them to participate in the study and sign the written agreement on behalf of their relative with severe dementia. The participants were fragile and the primary caretakers involved had great experience and knew the participants well, which was a prerequisite of participating in the study.

Several of the primary caretakers as exemplified below, also emphasized this tendency:

Results

However, the primary caretakers in the interviews, before and after the interventions, did not report any observable changes despite a lower reported score on the BVC (Tables 3&4).

The participant’s behavior differed, ranging from severe physical aggression to confusion and restlessness/wandering according to baseline NPI-Q (Table 2). Confusion, irritability and verbal threats were the most prominent features presented in the BVC items in approximately half of the sample (Table 3).

NPI items

Person 1

Person 2

Delusions

Hallucination

Agitation

Depression

Anxiety

Person 3

Person 4

Person 5

x x x

x x

Inappropriate behavior

Irritability

Deviating motor behavior

x x

Nocturnal restlessness Changes in appetite

x x

Excitability Apathy

Person 6

x x

Table 2: The Neuropsychiatric inventory-questionnaire for each participant categorized into present [x] or not.

The BVC with a mean score for all items in the 6 participants from 2.2 to 8.0 on a group level over the period indicated that the risk of violence was high and that preventative measures and plans about how to manage aggressive behavior should be made (Table 3). The individual BVC scores by contrast, indicated a tendency to improve during the intervention period from 0 to 11 at baseline to 0 to 8 at eight weeks (Table 4).

• Xx has a problem with aggression, he can be very violent and it is triggered by almost nothing - he is angry inside. But during the period in which we had the project going he was pretty OK (Patient 2).

Other welfare opportunities, such as social gatherings, reading activities, helping to prepare dinner, set the table and so on, were offered daily during the eight weeks. The participants took up these welfare activities ranging between 6 and 33 times. One primary caretakers elaborated how activities using song and music were integrated as key elements in many of the activities conducted at the nursing home: • We have activities for the residents every day and you could say that song and music are key points in these. But we also have nail care, massage, concerts and reading groups with reading aloud. These are very popular activities in the nursing home However, some clients were more prone to be active, as exemplified by this extract from one of the primary caretakers: • He is always very active and he likes to participate in everything that goes on in the house. So, when the project was going on he was less confused, but he was bored in the evenings when the activities stopped (Patient 3) Others were very particular in their choice of music and experiencing a repetition of the same entertainment could cause irritability and distress for the participants, thus representing a source of non-compliance, indicating the need for individualized adapted activities: • He is very particular when it comes to music - he is critical of the performance and he comments aloud and shows his annoyance. He does not like it when we play the same music repeatedly (Patient 4)

BVC

Person 1

Person2

Person 3

Person 4

Person 5

Person 6

Mean /Median

p- value

Confused

6.2 /10

0.04*

Irritable

3.2/ 4

0.16

Boisterous

4.7/ 2

0.14

Verbal threats

8.0 / 12

0.05*

Physical threats

2.6/ 1

0.13

Punch objects

2.2/ 1

0.14

Total score

24.5/ 40

0.03*

Table 3: Brøseth Violence Checklist [BVC] mean and median score registered daily for the 8 weeks of intervention for participants with dementia, persons 1-6. Mean score per item represent the total group. Item scores were evaluated on group levels for repeated measurements, p<0.05.

J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

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Person

BVC

Pre

Post

Pre

Post

Pre

Post

Pre

Post

Pre

Post

Pre

Post

p-value

Confused

0.02*

Irritable

0.04*

Boisterous

0.03*

Verbal threats

0.32

Physical threats

Punch objects

0.32

Total score

0.03*

Table 4: Brøseth Violence Checklist (BVC) scores for all items for each person from baseline (Pre) and at eight weeks post intervention (Post) and paired comparisons p<0.05.

Compliance Participation in the physical activity groups was limited and varied from 0 to 7 times in total. Attending music therapy sessions varied between twice and 22 times and outdoor walks varied from 0 to 7 in total. Explanations for not participating in activities varied. Some mentioned incontinence as one of the reasons for infrequent participation: However, he could not participate as planned because of physical problems, having to go to the rest room frequently - he has bowel and bladder incontinence problems (Patient 6) Another factor put forward as a reason not to participate was pain: • She likes music, she likes to participate; however, some days she refuses because of back pain and then she will not go out of her room (Patient 5) An individual’s need for rest was also a key reason why some of the participants did not manage to attend all the scheduled activities in the intervention: • He is a very active person, but he also has an urgent need for rest. I think it is important that he is able to control things in his own way (Patient 6) One of the primary caretakers mentioned also that her participant declined to participate in several of the activities due to lack of interest: • He joins things he is interested in and he thinks are OK; he is not interested in religious services, so he does not participate in them (Patient 4) Participation in music activities was also geared by a need for company: The combination of medication and music is effective in calming her down. She can be very boisterous and anxious if she does not get attention and personal contact (Patient 1) Needs identified by the primary caretakers When asked how best to meet the needs of persons with dementia the primary caretakers raised several aspects. One to one contact and social interaction on the person with dementia’s own terms were issues stressed by all the primary caretakers: J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

• But most important, at least I think so, is one-to-one contact. That is best for him - on his terms. Moreover, when he is not “present” nothing will do, because then he is only in pain and sorrow (Patient 4) Some of the informants emphasized the importance of smaller groups and the possibility of interacting one-to-one in the special care dementia unit, “She is happy to sit with one of the other residents”. “He has difficulty in speaking, but they communicate in a way” (Pa tients 4&5). Another issue put forward was the need of proper medication for optimal functioning: • Either he is sleeping or he is hyperactive … he reacts very easily to medication. Therefore, it is either too little or too much. It is not easy to find a middle way (Patient 6) In addition, the need to adapt to individual daily “rhythms”, through respect for the resident’s need for activity, rest, and solitude, was underlined. As one of the primary caretakers exemplified: • He needs to do things his own way and at his own pace. If he perceives too much pressure, he will be very agitated and aggressive (Patient 6) Another person in the same special care dementia unit was very active and liked to participate in most activities but some days she needed more solitude: • She is generally positive towards participation. Now and then, she has days when she says: “Leave me alone, I want to rest” (Patient 5).

Discussion The study of a combined systemized music and physical activity intervention for six persons with severe dementia for eight weeks indicates a shift toward less violent behavior post intervention in all the participants according to the BVC (Tables 3&4). The special care dementia unit’s routine reports showed that the participants were on stable medication for the period of the systematic intervention. However, the results must be interpreted with caution; it is a small case study with only six cases and with a mix of dementias. An Interesting finding was that the primary caretakers did not report the change of behavior in the interviews post intervention. This is in contrast to the BVC which was filled in every day during the Volume 5 • Issue 2 • 100051

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8 weeks by the same person. One explanation may be that the staff slowly adapt to the change of behavior over time, giving rise to a difference between objective and subjective measures in a longitudinal perspective. It could also be due to the difference in behavior being so small that it may not be considered to be clinically relevant [31]. Music therapy has been tried out in other settings with persons with Alzheimer’s, indicating both compliance and positive influence [9-13]. In general, the persons participating in these studies were in a less progressed phase of their dementia and were functioning slightly better cognitively than the ones participating in this study. The level of cognitive decline and a time perspective from its onset seem to indicate when music therapy and physical activity may have an impact on cognition and restlessness [9-19]. Possibly, a slightly younger group of participants with a higher level of cognition would have been more receptive to the intervention than the sample in this study. The systematization and tailoring of appropriate music therapy and the maintenance of physical activity, for frail institutionalized older persons with severe dementia may be more intricate and sensitive than anticipated, taking into account personal preferences and the availability of choice. This may have influenced the results as well as the length of the intervention. As demonstrated in our study, it is difficult to maintain a standardized music therapy program over time in this group of patients. This is reflected in the relatively poor compliance to the intervention in this study. The results are in line with similar studies in persons with dementia [32]. As a compliment to other methods like cognitive training and reminiscence therapy that also may reduce stress and improve the patient’s functional ability this combined therapy of physical activity and music therapy seem to be promising tools. Health issues, comorbidities and daily variations in the patient’s physical and mental condition may influence the motivation and possibility for participation in activities. This was illustrated by several of the participants, who suffered from painful conditions, incontinence and other physical limitations that could vary from day to day. In addition, the participants were old, mean age 84 years and the aging process in itself, may have diminished their motivation for activity [33]. Lastly, the participants had been residents in a geriatric institution for many years before this project: the institution thus represents their home. This may have formed and fermented a “way of life”. The ability to change and adapt to a new mode of behaviour may be difficult. It may even be detrimental to change, when routines represent comfort and safety. However, the participants were diverse and some indicated a need for change and a need to get out and about, but perhaps in a more spontaneous way than a systematically implemented activity could offer. In addition, personal needs for rest or activity often came in conflict with the institution’s “life” with more or less strict routines due to the structure of the building and the wards, shift work and frequently, lack of staff. It is evident that to implement interventions in this frail group a highly competent staff who can interpret and accommodate the signals and needs of the persons with dementia are vital. Competence building may be an important key to improving care. J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

In addition to facilitate optimal physical and cognitive functioning for the persons with dementia it may also be necessary to adapt the environment more than we were able to do, so that it would have been possible, safe and stimulating to be active. The level of cognitive decline, the time perspective of the onset of dementia, age and the length of stay in the institution may influence the impact on cognition and anxiety level. However, the implementation of a systematic combination of music and a physical activity program is feasible in this group of persons with severe dementia and the indications are that anxiety level and restlessness is reduced.

Acknowledgement We would like to thank the personnel and participants of the nursing home for their valuable help and contribution to this study.

Disclosure Statement No potential conflicts of interest were disclosed.

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J Clin Stud Med Case Rep ISSN: 2378-8801, Open Access Journal DOI: 10.24966/CSMC-8801/100050

Volume 5 • Issue 2 • 100051