Recently some friends from out-of-town were visiting, and our conversation turned to loved ones coping with dementia. Everyone understood how listening to personal music can improve quality of life. So, I asked whether it had been helpful.

“Yes,” said Joanne, whose Mom passed away this past year from Alzheimer’s. Joanne was so pleased that playing her mother’s favorite music helped to keep them close. They sang and danced. Mom was happier with her music, and so was Joanne.

“Yes,” said Fred of his identical twin brother, Ted, who died recently from Lewy Body dementia. Fred and his siblings knew that Ted would love to be able to hear his favorite music. And they made sure he did during the last four years of his life. “I think it’s amazing that Ted was able to still have pleasure listening to his favorite music every day,” Fred told me. “He lost sight in his good eye, so he couldn’t play cards or see the TV very well, but he could listen. He had other problems that inhibited his joy on earth. But the music was always there.”

“No,” said Doris, an RN who helps patients living at home. Currently she spends three days a week with an individual with advanced dementia, to give his wife some respite. They have tried their best to play his favorite music, but he has not seemed to connect with the music they thought he would like.

Hearing their music does not always help people with dementia. Why? The top reason is that we wait too long to make it available. We wait until someone is no longer able to articulate exactly what music they love to hear. And it’s matching the music to their personal tastes that’s the crucial ingredient.

Find Out Early What Music Your Loved One Loves

A diagnosis of dementia can feel devastating. But the sooner during the disease’s progression that the individual can create their own playlist or express their preferences, the better. It’s not enough to know their favorite music genre. Favorite, specific music triggers long-term memories that can help the person connect with the present.

Doing that music detective work is not just a worthy investment of time and effort for families. We need healthcare professionals at every touchpoint to enthusiastically recommend that people stay connected with their music. This includes diagnosticians, dementia support organizations, and researchers. What an opportunity for all those supporting, diagnosing, and researching dementia to integrate this advice when connecting with families!

In his book DIGNITY for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease, Dr. Stephen G. Post recommends that every person with dementia should listen to at least 15 minutes of their favorite music each day. Dr. Post is Director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University.

That message needs to be amplified, loud and clear, by every member of the dementia care team. But all too often, a dementia diagnosis is conveyed with little hope of joy in life, and little or no direction to connect with dementia support organizations or other positive, life-affirming guidance. People are much more likely to receive a prescription for a drug that may have questionable benefits for their quality of life than any supportive recommendations.

Seek Out the Best, Life-Affirming Advice and Support

Fortunately, some dementia support organizations are leading the way by making personal music accessible. In particular, two leading organizations leverage music to benefit both persons with dementia and their caring family members. Recently I spoke with Melisa Robinson, Music Project Assistant of the Alzheimer’s Society of Toronto Music Project, and with Executive Director Heather Hooper of the Dementia Alliance of North Carolina (DA-NC) Music & Memory at Home. Both organizations make music kits available at no charge to families and to residents with dementia.

“We can provide a music kit for your family, and we can provide joy,” said DA-NC’s Hooper. “It leans into that grief. How can I give Mom that moment of joy again? How can I connect with my loved one in a way that is meaningful?” Feedback for the program has been very positive. “People are so happy to hear music they love,” she told me. “You are really supporting the family. We’re so lucky to see all this joy.”

Helping families caring for a loved one at home, Melisa Robinson reports that over the eight years of the Alzheimer’s Association of Toronto Music Project, they have distributed thousands of music players. She acknowledges that the music may not work for everyone, but that it does work for most. Robinson believes that every Canadian province would benefit from having similar access to favorite music.

Researchers Have a Role to Play, Too

People with dementia volunteer for research drug trials for many reasons. Some are accepted. Others do not qualify. Either way, they are making a contribution with the hope that their lives will improve or the lives of those who follow.

The late Frederick Schaerf, MD, PhD, founder and director of the Neuropsychiatric Research Center of Southwest Florida, ran multiple Alzheimer’s drug trials. Always on the lookout for participants, he could only accept one in ten who fit the study criteria. Whether they were recruited or turned away disappointed, however, the one thing he would recommend to all was to keep connected to their favorite music, the one simple yet immediate way to enhance their lives.

Does personal music work all the time? No. But if we focus on learning what people love so that we can help them access musical favorites when they need them most, odds of success are high. It’s a team effort by all involved. Families benefit from helping to create the playlist, not just for the future, but for now; the music we love is perfect anytime. Diagnosticians, including psychiatrists, psychologists, and neurologists, can give hope to patients and their families by encouraging them to explore the benefits of personal music. Dementia support organizations should follow the lead of the Alzheimer’s Association of Toronto and DA-NC, making personal music easy to access for people with dementia and their families. And researchers can spread the word, too, following Dr. Schaerf’s model.

In the words of Dr. Stephen Post, “It’s essential to remind yourself that your loved one is ‘alive inside’ and ‘still there’ beneath the surface.” Discovering the music that is key to that awakening needs to be a priority for us all.