How personalized music can support dementia care in BAME communities

Music can be a powerful tool for people with dementia, and activists say the more personalized it is, the more meaningful it can be. Laura Reid reports.

Thursday 1 October 2020, 4.45 pm

Ripaljeet Kaur runs a dementia café in Leeds. Photo: Leeds Touchstone BME Dementia Service

Activists calling for a culturally more inclusive approach to dementia care have a simple message; there is no one size that fits everyone.

“We want to make sure that all those living with dementia, regardless of their background, have access to the right care for them and consider the whole person,” says Grace Meadows, program director of the National Music for Dementia campaign.

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The campaign aims to make music more easily available for people with dementia and is highlighting the need for a personalized approach that takes into account cultural differences.

Grace Meadows from the Music for Dementia campaign.

“Having access to personalized music, in the right way and at the right time, has been shown to be more effective and meaningful in helping to tackle the symptoms of dementia, such as anxiety and agitation,” explains Grace. “It also facilitates communication, creativity and, most importantly, allows you to see the person for who they are, through the music that matters to them.”

Dementia practitioner Ripaljeet Kaur, of Leeds-based Touchstone BME Dementia service, experimented with music sessions for people with dementia in Black, Asian and Ethnic Minority (BAME) communities – and their caregivers – initially holding them as part of South Asian dementia Hamari Yaadain coffee.

“It is important that the music is culturally sensitive,” says Ripaljeet. “We try a lot of different music during the music therapy sessions and ask those who attend which music they like and want to hear.”

Ripaljeet, who ran coffee practically during the coronavirus pandemic and took one of the music sessions online for the first time last month, says he has seen a “spark” and a rise in mood among people with dementia and their assistants when I was given the opportunity to interact with the music.

“There is a person who is in the middle and advanced stages of dementia and he has lost his communication skills and during one session he started singing his song. I found out later that it was something he sang when he was young, I think a family prayer or a family song. Everyone joined in cheering and she sang out loud. That moment really hit me. “

After taking part in several Ripaljeet sessions, Pushpa Kapugama, whose husband, Dr. Somapala Kapugama, 81, is suffering from dementia, has begun to introduce more music into the home, focusing on songs from Sri Lanka, where the couple lived before moving to the UK. .

“When our kids were little, we used to watch Top of the Pops and he loved that music, but now English music doesn’t care … Whenever I get the chance, I put some Sri Lankan music for him and he likes. You can see his face light up. I know something is going on in the brain. “

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Ripaljeet says being aware of people’s cultural, religious and linguistic needs – bearing in mind that people with multilingual dementia may start to find it difficult to communicate in languages ​​outside their native language – makes it “much easier” to organize meaningful activities that resonate more deeply with those who participate.

“If they are part of a group where everyone speaks English and everything is centered around English culture and history, someone who doesn’t speak the language or has the same cultural background will have a hard time relating to things,” he says.

Grace agrees. “With the diversity of communities and cultures we have in the UK, it is really important to understand how different people use music, to be respectful of this and to incorporate it into the way dementia services and care are offered. Not everyone grew up listening to Elvis or (Dame) Vera Lynn or the Beatles … When music is personalized and meaningful, it has its greatest benefit. “

Mohammed Rauf, the founder and director of Bradford-based community-interest company Meri Yaadain, supports Music for Dementia’s calls for a more culturally inclusive approach.

Since 2006, she has pushed to raise awareness of dementia and its behaviors among BAME communities and the organization now works with service providers to ensure that support is culturally appropriate and accessible.

Mohammed, who holds an MBE in recognition of his services to people with dementia and their caregivers, was guided by personal experience with his late grandmother.

“When my grandmother had dementia, we didn’t know what it was,” she recalls. “As a teenager I remember thinking it was kind of funny that Grandma would come up with vulgar swear words that were totally out of character.

“She was obviously frustrated and upset, which is why she was cursing. We didn’t know that. Having worked in this industry for some time now, my role has become to support awareness (of dementia) … and access to information.”

While around 25,000 people of BAME origin are accepted to have dementia in the UK, Mohammed says the number could be vastly underestimated due to the stigma associated with the condition in a number of cultures. In five major South Asian languages, there is no word for dementia.

“The stigma around dementia is due to a lack of understanding,” he says. “Dementia is viewed disparagingly by many people in the BAME communities. Some think it is madness, jinn possession or witchcraft, others think it may be a punishment from God.

“So, family carers and the person with dementia hide it and don’t easily seek help or evaluation. This means they lose life support, such as music therapy, until they reach crisis point and more intense support is needed. “

“From an organizational point of view, because people don’t come forward for services, it is assumed that they are well and do not need specialist services,” he adds.

Many of those diagnosed are also missing out on vital care and their caregivers of much-needed support, says Mohammed, as existing services are often not always tailored to help people from a range of different cultures.

“There needs to be more education and training for family carers and staff working in dementia services on how to provide culturally acceptable care and support people with dementia,” he says.

When it comes to music, he suggests considering rhythm and acting and folk, religious, classical and Bollywood music as well as pop. Grace wants to see more recognition of musical diversity and heritage and is pushing for music offerings to become more personalized for people living with dementia.

Summarizing the power of such actions, he explains: “There is no cure for dementia. We don’t have a drug answer yet … In the meantime, what we’re saying is that it’s about helping people have the best quality of life possible – and that can really be achieved through music. “

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