Advocating for Your Patients With Dementia

Dr Clements-Cortes is an assistant professor, Music and Health Research Collaboratory, University of Toronto, Ontario, Canada; instructor, Wilfrid Laurier University and Ryerson Chang School; certified music therapist; and registered psychotherapist. www.notesbyamy.com

Are you a patient advocate? I am sure many of you will answer “yes” to that question. In some ways, it virtually goes hand-in-hand with being a care professional. Health care professionals (HCPs) are at the forefront of being able to advocate for the patients they serve. Advocacy involves communication, problem-solving, and respect.

At a systematic level, HCPs can come together as a group to raise important issues for a broad group of persons, which are often informed by best practices and current research. This can help bring about organizational changes as well as larger changes at the government level. In their day-to-day actions, HCPs can advocate for the patients within their care, as well as their patients’ caregivers, by providing individual recommendations.

Sometimes, advocacy can be as simple as informing patients and families about their options, thereby empowering them, and providing resources that can be of assistance. For example, persons with dementia (PWD) are often unable to self-advocate, even in the early stages of the disease; they must rely on their personal caregivers. Their caregivers may subsequently be overwhelmed and not know who to ask for guidance and assistance or even know what questions to ask. This is where allied health care workers, physicians, and nursing professionals can make a difference.

In my 22 years of working in long-term care, I have seen just how much patients and caregivers appreciate learning about new resources and tools to navigate the symptoms and complications of dementia. Recently, for instance, I was providing music therapy to a couple in their home, one of whom is a PWD. “Jerry,” the PWD’s husband, had initially sought out music therapy after he had seen a news story on the benefits of music therapy for PWD. Jerry is her primary caregiver, and they have only one child who lives far away. Due to these circumstances, he was stressed, fatigued, and worried. As an older adult with his own health care issues that he tended to put aside, Jerry benefitted from an advocate. I provided Jerry with some resources and contacts in his area to whom he could reach out. He was grateful, as he was unaware of many services such as the Community Care Access Centre (CCAC), which could provide him with in-home personal support worker assistance. Further, the CCAC was able to connect him and his wife to a day program she could attend, providing him with two days during the week where he had a short break to do any errands or tasks.

In the bustle of caring for many patients each day, it can be easy to forget the significant impact you can have on a patient’s care journey just by making sure they are informed and connected to important resources and programs. Advocating does not always mean hours of time and effort—it can be—and is often—small efforts like these that can have immediate results, especially for PWD and their caregivers.

Amy Clements-Cortes is Assistant Professor, Music and Health Research Collaboratory, University of Toronto; Academic Coordinator & Instructor, Interdisciplinary Studies, Ryerson Chang School; Instructor and Supervisor, Wilfrid Laurier University; Music Therapist and Registered Psychotherapist. Amy has extensive clinical experience working with clients across the life span, with a specialty in older adults, dementia and palliative care. She has authored multiple peer-reviewed publications, including her new 2016 book: Voices of the Dying and Bereaved, and she has given over 100 conference and/or invited academic presentations. Amy is Past-President of the World Federation of Music Therapy (WFMT), and Managing Editor of the Music and Medicine journal. She is a Past President of the Canadian Association for Music Therapists, and serves on the editorial review boards for 9 international journals. Notes By Amy was founded in 1995 and provides a variety of professional services including: Private Music Therapy, Psychotherapy, and Guided Imagery and Music Sessions; Performances; Clinical Music Therapy Supervision and Mentoring; Voice Lessons; Music Therapy Courses; and Research Collaboration.

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