Engaging with the South Asian community about memory loss

Mukadam N (2023) Engaging with the South Asian community about memory loss. Journal of Dementia Care 31(5)31-32.

Author details

Dr Naaheed Mukadam is an old age psychiatrist working in the UCLH Mental Health Liaison Team, and an Alzheimer’s Society senior research fellow at UCL

Clinician and researcher Naaheed Mukadam shares her experience of using music and dance to explore memory and identity with South Asian people with dementia and their families

Key Points

  • There has been much research about how dementia epidemiology and pathways to diagnosis and post-diagnostic support for people from diverse ethnic groups vary, and how the care pathways should be optimised
  • However, there is relatively little work on public engagement using the creative arts in people with experience of dementia in minority ethnic groups
  • Working in a creative way without a research question has allowed me to connect with people in a different way
  • Using music and movement to express complex experiences, we have created work that will hopefully speak to a wider range of people and open up conversations around memory loss in the South Asian community

As a researcher, I have always been interested in ethnic inequalities in dementia. My clinical experience in a memory clinic suggested that people from minority ethnic groups presented at a later stage of dementia, and many times in a crisis, which led to distress for the person with dementia and their family. Since that initial observation, I have conducted systematic reviews (Mukadam et al 2011b), qualitative (Mukadam et al 2011a) and quantitative work (Mukadam et al 2019) exploring pathways to diagnosis in dementia.

I have designed and tested an intervention to encourage earlier help-seeking for dementia in the South Asian (Mukadam et al 2018) and black population (Roche et al 2018). I realised while working on other epidemiological work (Livingston et al 2017) that relatively little research had examined differences in risk factors and prevalence of dementia in minority ethnic groups.

I therefore set about investigating this, using a variety of data sources, and found that dementia risk factors were more common in people from minority ethnic groups (Mukadam et al 2022b), that dementia onset was earlier in these groups and that dementia incidence and prevalence were higher in the black population.

Furthermore, survival after dementia diagnosis was shorter in people from minority ethnic groups (Mukadam 2023). I also found that certain genetic risk factors may be more common in minority ethnic groups (Mukadam et al 2022a) which could explain higher dementia rates.

Much of my work has received media coverage, including national newspaper articles and appearances on national television, giving me hope that information about dementia in minority ethnic groups was being disseminated. However, I felt that the personal stories of people with dementia and their families were lost in the statistics, and I wasn’t sure how represented people from minority communities felt when they saw articles or television programmes about research.

I started thinking about how best to show personal stories and experiences outside of a purely research space, especially given the growing recognition of the importance of public engagement within research (Wellcome Trust 2011, Wellcome Trust 2016). At this time I also became aware of research showing the benefit of music for the brain (UK Music/Music for Dementia 2022), and organisations engaging the public about dementia using creative arts. Some examples were the Alzheimer’s Society “Singing for the Brain” initiative, Music for Dementia and Arts 4 Dementia.

However, when I looked into these, I found that they almost exclusively benefited people from the UK majority population. The only example I could find that was for minority ethnic groups is the Hamaari Yaadain programme which is a singing programme run in a virtual café for older South Asians by the charity Touchstone.*

I wanted to bring the public together to examine the experience of people with dementia and what it means to them and their families. Being from a South Asian background, it made sense to start with the South Asian community.

I spoke to Dr Shibley Rahman (honorary research associate at UCL and carer for his mother who had dementia) about how he had used music to connect with his mother and bring her joy. I also reflected on my own clinical experience of listening to family carers.

With Soumik Datta, an award-winning musician and his company Soumik Datta Arts, and a talented dance artist called Jesal Patel, affiliated with dance group Akademi, we ran workshops in a care home and a day centre, playing a variety of music including South Asian classical and contemporary, as well as some popular English songs by artists familiar to the participants.

Some workshops included guided movement from a seated position (as many participants had mobility problems). In all workshops we held informal conversations about peoples’ lives, important memories and what pieces of music held particular meaning for them.

The process was very unusual for me as a researcher. I have been so used to posing specific questions and focused on finding specific answers that initially it felt formless and disorientating. But I felt a sense of freedom and inspiration listening to and connecting with people in the different settings and just giving them space to talk, or even just observing their expressions, body language and interactions with each other. In one session I noted that participants were very engaged in the music and even acted out certain sequences.

Being present and connecting with people’s personal stories inspired me to compose some songs, based on the comments people had made, which I sing in Hindi and Bengali. Through these songs I am trying to bring to life their experiences, particularly the feeling of slowly losing the person you love, but also getting glimpses of their true self and connecting through shared activities.

Soumik used his experiences at the workshop to compose original music, playing with echoes and transitioning from one raga to another to demonstrate the effect of slowly losing memory. In his words, “the musical equivalent of a memory is an echo, a partial fragment of the original”. Jesal has composed an original dance piece with a partner to reflect the stories of people we met. We all took part in a public performance at the Bloomsbury Theatre in London in June (Music, meaning and memory – an evening of South Asian dance and music) with proceeds donated to the Alzheimer’s Society.

As Soumik put it:

“Spending time with elderly people living with dementia made me realise how precious our memories are. We are shaped by what we remember which gives us our very identities. So to start losing them is to lose our selves. This inspired me to compose music where beats fade and notes gradually diminish, as a way to start a conversation about our shared, collective histories.”

And Jesal said:

“Both settings that we visited had a very different dynamic. We gained info in different ways, one group being very vocal and the other with more non-verbal actions… which gave us a range of mediums to work with. A sense of community really promoted confidence and conversations/communication.”

My experience has taught me that the connection from learning and reflecting people’s stories is highly valuable, and one that is undervalued in mainstream research. People have told me about the uncertainties and variations in having memory problems or caring for someone with dementia, but among the struggles have been stories of connection, and music and other non-verbal forms of communication have been key to that.

Participants in our workshops seemed to really enjoy their time with us and asked when we would be going again. Overall, I have learned a lot as a researcher and hope to continue to use this form of engagement going forward.

*For more information on Hamari Yaadain, go to arts4dementia.org.uk/?post_type=event&p=10573.

Read a report on Naaheed Mukadam’s work in the Guardian:

www.theguardian.com/society/2022/sep/18/britons-of-black-and-south-asian-origin-with-dementia-die-younger-study-finds

References

Livingston G, Sommerlad A, Orgeta V, Costafreda SG et al (2017) Dementia prevention, intervention, and care. Lancet 390(10113) 2673-2734.
Mukadam N, Cooper C, Basit B, Livingston G (2011a) Why do ethnic elders present later to UK dementia services? A qualitative study. International Psychogeriatrics 23(7) 1070-1077.
Mukadam N, Cooper C, Livingston G (2011b) A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry 26(1) 12-20.
Mukadam N, Cooper C,  Livingston G (2018) The EAST-Dem study: a pilot cluster randomized controlled trial. International Psychogeriatrics 30(5) 769-773.
Mukadam N, Giannakopoulou O, Bass N, Kuchenbaecker K, Mcquillin A (2022a) Genetic risk scores and dementia risk across different ethnic groups in UK Biobank. Plos One 17(12) e0277378.
Mukadam N, Marston I, Lewis G, Mathur R et al (2023) Incidence, age at diagnosis and survival with dementia across ethnic groups in England: A longitudinal study using electronic health records. Alzheimer’s and Dementia 19(4) 1300-1307.
Mukadam N, Mueller C, Werbeloff N, Stewart R, Livingston G (2019) Ethnic differences in cognition and age in people diagnosed with dementia: a study of electronic health records in two large mental healthcare providers. International Journal of Geriatric Psychiatry 34(3) 504-510.
Mukadam N, Lewis G, Livingston G (2022b) Risk factors, ethnicity and dementia: a UK Biobank prospective cohort study of White, South Asian and Black participants. Plos One 17(10) e0275309.
Roche M, Mukadam N, Adelman S, Livingston G (2018) The IDEMCare Study—Improving dementia care in Black African and Caribbean groups: A feasibility cluster randomised controlled trial. International Journal of Geriatric Psychiatry 33(8) 1048-1056.
UK Music/Music for Dementia (2022) Power of Music. London: UK Music/Music for Dementia.
Wellcome Trust (2011) Community Engagement – Under the Microscope. London: Wellcome Trust.
Wellcome Trust (2016) Factors Affecting Public Engagement by UK Researchers. London: Wellcome Trust.