20Q: Dementia - Evidence-Based Strategies for Quality of Life Interventions

From the Desk of Ann Kummer

Dementia is a general term that is used to refer to a variety of conditions that result in a progressive decline in an individual’s cognitive functions. Dementia can affect memory, judgment, problem-solving, language skills, and other thinking skills. Overall, dementia affects the person's ability to perform everyday activities, including the ability to communicate. This results in social isolation and a reduced quality of life. Although there are some drugs that can mitigate the symptoms for a while, there is no cure for dementia at this time. Fortunately, there are some therapeutic interventions using music that can greatly improve the psychosocial adjustment of affected individuals and therefore, improve their quality of life. For more information regarding these interventions, I would like to introduce you to Dr. Linda Carozza and her doctoral student, Alexandra Seigies.

Linda Carozza, PhD, CCC-SLP is a researcher and educator in the field of adult neurogenic communication disorders in the greater New York metropolitan region. Her primary interests are in aphasia, dementia and Parkinson’s disease. She has published articles on these topics in major journals and is the author of 3 books published by Plural Publishers. She has presented at local and national conferences and her current work involves non-pharmacological approaches to dementia care.

Alexandra Seigies is a first-year student in the PsyD program in school and clinical child psychology at Pace University. Aside from doing research on communicative ability in dementia patients, she is also studying parent-infant dyads to see how movement and interaction patterns affect development. Her primary interests at the moment are music therapy and movement therapy of various traditions.

In this 20Q article, the authors will answer questions about dementia treatment using a pharmacological approach and the use of alternative approaches, such as music therapy, narrative storytelling, poetry, exercise movements and dance. These approaches have been shown to have many positive effects on overall function and the quality of life. This article offers great tips for enhancing the lives of those individuals who are living with dementia and even improving the lives of their families.

Now…read on, learn, and enjoy!

Ann W. Kummer, PhD, CCC-SLP, FASHA, 2017 ASHA Honors
Contributing Editor 

Browse the complete collection of 20Q with Ann Kummer CEU articles at www.speechpathology.com/20Q

20Q: Dementia - Evidence-Based Strategies for Quality of Life Interventions

Introduction to Dementia Treatment

Linda Carozza

Alexandra Seigies

1. What is the difference between a pharmacological approach and a nonpharmacological approach to treatment?

Pharmacological approaches include prescription drugs that are used in dementia treatment. Such medical approaches, which include cholinesterase inhibitor and other medical treatments, are not proven to cognitively benefit the individual, and are also costly to families. The usefulness of such approaches for suppressing concomitant symptoms of the disease, such as anxiety and depression, has been highly debated. These efforts can also have some negative side effects and also may lose effectiveness after a period of time.

On the other hand, research supports the effectiveness of nonpharmacological approaches, such as music therapy, narrative storytelling, poetry, and exercise/dance movement programs. These approaches have been shown to have a number of positive effects, including increased measures of quality of life, improvement in speech and communication, memory and recall, and overall mood. Pre and post function measures in preliminary studies give way to promising results, including quality of life benefits and cost-effectiveness.

2. What are the causes and symptoms of dementia?

Dementia is a term used to describe symptoms of cognitive decline in communication, memory, and thinking. It is caused by the degeneration of the cerebral cortex, which is responsible for thoughts, memories, actions, and personality. This may result from cerebral trauma from a stroke, head injury, or a brain tumor. Therefore, it is not a typical part of the aging process.

3. Is Alzheimer’s disease the same as dementia?

Alzheimer’s disease is a specific form of dementia that inhibits and changes thinking and behavior patterns. Alzheimer’s disease is the most common form of irreversible dementia, accounting for 50-70% of all dementia cases. Diseases characterized as dementias are often progressive, degenerative, and irreversible in nature. They also can affect or interrupt the ability to perform activities of daily living (ADL’s), which may include eating, dressing, and bathing as well as other routine activities. Dementia is a steadily growing epidemic – it afflicts one in every nine individuals over the age of 65 and 200,000 individuals under the age of 65 (“Alzheimer’s,” 2016) It is estimated that there are approximately 7.7 million new cases of dementia being diagnosed each year.

4. Is there a cure for dementia?

There is no cure for dementia. The challenge lies in finding the highest quality treatment to alleviate the symptoms of the disease and assist individuals in maintaining their quality of life. This includes preserving cognitive functioning, especially during the moderate-to-severe stages, when an individual may be more at risk for costly institutionalization. Importantly, the impact of dementia is not isolated to the individual diagnosed - it also extends to caregivers and includes physical, mental, and monetary burdens, which all add to the societal impact of this disease.

Furthermore, enhancement and preservation of the individual's “personhood,” no matter the stage and severity of the disease, is crucial (O’Connor et al., 2007). Personhood is defined as “the standing or status that is bestowed upon one human being, by others, in the context of relationship and social being.” According to Fetterolf (2015), establishing personhood with individuals with Alzheimer’s can also serve as the “bridge to their world, the foundation for a caregiver-care receiver relationship, and an avenue to provide a sufferer with a sense of personalized healing.” It is demonstrated in work by Sjögren et al. (2013) that person-centered care for individuals with dementia can be considered the optimal way of improving ADL’s while simultaneously maximizing individual potential.

5. Can individuals with dementia regain any lost cognitive abilities?

No, lost cognitive abilities cannot be regained and tend to decline over time. It is extremely important to consider that the use of enhanced non-pharmacological strategies may stimulate the patients to demonstrate seemingly ‘lost’ skills (such as singing and/or retrieving past memories) or at least preserve functioning as much as possible. A major contributor to the successful achievement of this goal is the team that is responsible for the daily care of the individual.

6. What type of care is available for dementia patients?

Many professionals may be involved in dementia care programs. According to the American Speech-Language-Hearing Association, speech-language pathologists (SLP’s) have “an ethical responsibility to provide appropriate services that will benefit the individual and maximize cognitive-communication functioning at all stages of the disease process” (“Dementia,” 2016). As such, formal speech therapy should focus on providing the individual with an optimal means of communicating with others that can significantly aid in their executive function while also maintaining their independence for ADL’s (Rogalski et al., 2016). SLP’s and other team members and families should thus be able to work in conjunction with other certified therapists, such as music therapists, in order to provide the optimal treatment necessary in keeping with the goal of maximal life adjustment to disability.

Music Therapy

7. How does music therapy help dementia patients?

Oliver Sacks, a pioneer of music therapy research, has discussed the effectiveness of incorporating music therapy approaches across a number of progressive neurological diseases. Music therapy applications are considered by some to be a form of cognitive stimulation therapy (CST). Music therapy purports to create heightened environments for individuals with dementia conducive to a stimulating, person-centered atmosphere by using recreationally based activities (“Dementia,” 2016). According to the American Music Therapy Association (2016), music therapy is an “established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals.” The principles of music therapy begin with an assessment of the strengths and needs of each client.

Following the assessment, the music therapist then provides the indicated treatment, which may include “creating, singing, moving to, and/or listening to music” (American Music Therapy Association, 2016). Through this involvement in the therapeutic context, clients’ communicative and cognitive abilities have shown improvement. In many cases, generalization of these skills has been observed to extend to their ADL’s as well. In regards to safety and costliness: music is quite safe so long as there is an avoidance of excessive volume, and it is also inexpensive, given the ease of access using current technology and media

8. What makes music therapy so effective?

Music therapy is so effective because it uses differential sites of activation and other components that differentiate music from spontaneously generated speech. In fact, engaging in music and singing is an ability that often remains intact during the progression of dementia due to the fact that it does not require the same type of cognitive function as free (spontaneous) speech (Alzheimer’s Foundation, 2016). The lyrics to music have already been learned and stored into long-term memory, thus making them easier to retrieve automatically.

Music therapy can also be beneficial due to its adaptability and the fact that it can be used on a much wider/lengthier basis (Tuppen, 2012). It was found that familiar music identified as preferential to patients by caregivers, and which was created through rhythm instruments (keyboards, Remo djembe drums, ocean drums, and colorful scarves) is a practical and ethical means of helping to manage certain symptoms of dementia, with benefits including decreasing levels of depression and agitation (Ray et al., 2015). Music, in and of itself, may stimulate an individual with dementia through its rhythms, which will ultimately affect the individual's narrative and associative agency, allowing for opportunities of meaningful interaction between patient and caregiver (Matthews, 2015). Lastly, the overall impact of engaging in a successful social interaction (such as singing a song or creating a piece of music collaboratively with others) cannot be overestimated. This allows a person to connect to his/her psychosocial identity or ‘personhood’ with decreased agitation and a capacity to reduce maladaptive behaviors.

9. Does music therapy require active involvement on the part of the patients?

There are additional studies based on “receptive” or music-listening interventions, to reduce agitated behaviors. These included listening to classical music genres or songs of meditation while simultaneously engaging in relaxing activities. Vink, Bruinsma, & Scholten (2003) demonstrated that active music interventions promoted increased participation from individuals with dementia when they were supplied with instruments to play along with “Big Band” genre of music. Furthermore, utilizing sonorous elements music when using a variety of musical instruments as a therapy tool can provide the person with a sense of identity, regulate emotions, and improve social relations, which further corroborates the results of the previous study as well

10. Are there future directions for music therapy?

While music therapy certainly has proven benefits, more research needs to be completed in order to determine exactly to what degree the benefits extend, and in which specific areas (Serrone, 2016). Although a plethora of research exists on the efficacy of music therapy, and there is growing evidence of positive effects on individuals with dementia, there is still a great deal lacking in the methodological controls in research to provide substantive conclusions of qualitative and quantitative data of its usefulness (Raglio & Sospiro, 2010). The issues of systematic review and meta-analyses remain in the efficacy and effectiveness of the nonpharmacological approaches in medical care in general and require our collective thought as we move toward evidence-based practices in all the allied health professions.

11. Do you have any final thoughts about music therapy?

An additional final thought on this is that while there is scant research available on the price of instituting a formal music therapy program, it seems that this particular creative approach may be an overall favorable and more feasible option for the dementia population. It should also be noted that certain studies use the term music therapy in order to refer to therapeutic interventions that incorporate listening to recorded music, or singing to music along with recorded music which are delivered by research staff rather than certified music therapists, which in turn serves to reduce costs of personnel (Kemper, 2005). However, this may present additional issues, such as a compromise in the planning and delivery of care as a result of not having a licensed professional coordinate and monitor program effectiveness and growth.

Narrative Storytelling Therapy

12. Is it true that narrative storytelling is also a non-pharmacological therapy for dementia?

Yes, another unique form of non-pharmacological therapy for dementia is narrative storytelling, whose purpose is to “spark memories, encourage verbalization, and promote self-esteem among those with dementia,” according to healthcare professionals from a variety of domains and disciplines (Storytelling, 2016). One specific program included within this area is TimeSlips (TS), an evidence-based approach founded in 1996 by Anne Basting. TS involves providing individuals with hope and improving their “well-being through creativity and meaningful connection” (Timeslips, n.d.). It is a form of creative storytelling for individuals with cognitive deficits who are shown a picture and are instructed to create a story based on that picture.

13. What are the benefits of TS?

TS has been demonstrated to provide a stronger patient/caregiver relationship while improving the individual’s engagement with others (Fritsch et al., 2009). Additionally, it is important to note that TS encourages individuals to be more alert and engaged through the use of their imagination to tell stories rather than pressuring them to use memory and recall the past. It was also observed that TS has the potential to alleviate frustration and agitation in individuals with dementia due to the fact that the environment is a free expression area and thus alleviates the pressure associated with everyday conversation (Sullivan, Sillup, & Klimberg, 2014). Phillips, Reid-Arndt, & Pak (2010) also found that TS improves the ability to communicate while simultaneously increasing quality of life both during and post TS intervention.

14. Is there a relationship between music therapy and TS?

Similarly to music therapy, TS/storytelling has been proven to be quite beneficial and should be further researched. Due to the close relationship between singing and speaking, the therapeutic application of singing improves the communication potential of persons with impaired speech (Cohen, 1994). This posits the notion that TS could potentially be enhanced if it incorporates a musical component to it.

Singing while using familiar tunes additionally enables patients to regain control over their own thoughts, increasing their mental well being (Staricoff, 2004). The benefits of the TS, similar to music therapy, are that it is focused on preserving the “person” and is also less costly than medicinal interventions. This type of nonpharmacological approach requires few resources and the images used are easily replicable (Houser, George, & Chinchilli, 2014).

15. Does a TS approach present any difficulties?

While the use of this approach has very promising potential, the challenge of the evidence-based research lies in implementing the approach in a manner that can be modularized for each population of dementia patients. Thus, the training of young professionals in the accurate and objective delivery of these methodologies is critical to understanding and evaluating the impact of this approach in dementia care (Neumann, Carozza, & Georgiou, 2010).

Poetry Therapy

16. Is poetry therapy similar to music therapy and narrative storytelling?

Poetry therapy is similar - to an extent - to narrative storytelling and music therapy in that poetry shares some key elements with both techniques. Each of these therapeutic approaches stresses the use of an individual’s creativity and encourages the promotion of cognitive stimulation through various channels.

17. What does poetry therapy involve?

Typically, poetry therapy involves the reading of poems, songs, hymns, etc. as well as the creation of poems by individuals with dementia. The poetry can also be constructed on a narrative level by having the individual create a poem based on his/her own feelings and outlook. Finally, poetry can also include musical components that provide these individuals with poetic and narrative elements which are able to represent symbols which hold meaning to past experiences (Ridder & Aldridge, 2003). This incorporation of both poetry and music therapy may potentially serve to even further increase cognitive function, which affects the individual's narrative agency and allows for more meaningful speech (Matthews, 2015).

18. What are the benefits of poetry therapy?

Poetry therapy has many positive benefits, including its ability to relieve these individuals of some of their everyday stress and help bring them to a calm place where they can listen, enjoy, and respond to poetry in a way most people would not necessarily assume they were capable. Wexler (2014) similarly posits the idea that poetry is able to “positively slow individuals down, speak to their souls, and give individuals some validation in their lives.” Additional studies conducted by Clark-McGhee & Castro (2015) highlight the focus on personhood and the ultimately meaningful experiences that can be obtained through poetry. Thus some of the positive benefits of poetry are that it preserves the self, fosters the individual's sense of “personhood,” and enables individuals with dementia to obtain a sense of being, while costing relatively nothing and producing long-lasting positive effects. In sum, the basic components of poetry therapy may be an under-explored area of non-pharmacological approaches that warrants attention for its usefulness.

Exercise and Dance Movement Therapy

19. Can exercise help improve symptoms for dementia patients?

Exercise programs as a method for treatment are yet another example of the potential non-pharmacological approaches to dementia care. Exercise programs for the geriatric dementia population can have a direct relationship in improvement of various areas of functioning, including cognitive abilities, neuropsychiatric symptoms, depression, and mortality.

Do exercise programs for older individuals with dementia improve their cognition, ADLs, and symptoms? The major findings by Forbes, et al. (2015) concluded that there was evidence that exercise programs can improve performance of daily activities for individuals with dementia. Additionally, studies by Heyn, Abreu, & Ottenbacher (2004) found that exercise training yielded positive results for individuals with dementia by increasing both cognition and physical function. Exercise can include anything from gardening, dance, seated exercises, walking, Tai chi, or swimming, depending upon the mobility and capacity of the individual (“Exercise,” 2015).

Exercise has been shown to increase ADLs, cognition, and opportunities for social interactions, all of which increase the individual's life quality while preserving his/her “personhood” (Forbes et al., 2015). Furthermore, exercise can be relatively inexpensive, especially if done in the context of daily activities. Increasingly, the “prescription” of increased physical activity is one that the general population is also receiving, and thus it makes sense to emphasize the role of exercise and movement in adult daycare and other settings in which individuals with dementia receive care.

20. What is dance movement therapy?

Dance movement therapy is another specific form of creative arts therapy and exercise which has been shown to directly improve the quality of life for individuals with dementia. Dance movement therapy involves the use of creatively moving the body in order to connect one's cognitive state to their emotions, thus integrating them to the surrounding environment both physically and socially (Karkou & Meekums, 2014). Rather than learning specific steps to a song, the individual is encouraged to engage in movements which are improvised and expressive of their creative abilities, all of which can ultimately help the individual preserve their sense of self and give them a new way to live in the world (Karkou, n.d.). Dance movement therapy is available for any home with access to a stereo or source of music and a simple speaker system, which exemplifies the cost-effectiveness of this approach (Guzmán-García et al., 2012). Additionally, in terms of exercise that includes dancing, there is also potential for the integration of music therapy within the dance activities, leading to a multifunctional approach. We see these approaches used in neurodegenerative diseases with dementia overlay such as Parkinson’s disease.

Conclusion

Once research has expanded to demonstrate advancement in multiple fields, these may be shown to be more effective treatments, both in terms of cost-effectiveness and improvements in quality of life for both the afflicted individuals and their caregivers. Furthermore, this can serve to form a foundation for the formulation and expansion of value-added programming to current treatment models, particularly in facilities such as adult daycare settings. An example of expansion of these therapies is an exploration of the possible integration of these approaches (e.g. music therapy in combination with poetry therapy).

Acknowledgments

Thanks to Lisa Marie Serrone and Lara Sugatan for our shared vision about dementia and nonpharmacological interventions.

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