Case study: SAVE-D study: The South Asian Voices Enabling Dementia Care
A collaborative success: The South Asian Voices Enabling Dementia Care ‘SAVE-D’ study in Manchester
“The members of the DeNDRON team who have worked with us have been absolutely marvellous – enthusiastic, positive and great problem solvers.”
Professor David Challis, study lead
The NIHR Clinical Research Network's Dementias and Neurodegeneration DeNDRoN) speciality supported a study sponsored by University of Manchester titled ‘SAVE-D’ (South Asian Voices Enabling Dementia Care).
The study looked at the challenges that South Asians in Greater Manchester faced, when presented with recognising and addressing memory problems and dementia. The collaboration was a success and together, with the DeNDRoN specialty's support, the team effectively recruited a strong cohort of South Asian individuals from local NHS Trusts and community settings, surpassing the original recruitment target of 180 participants. SAVE-D was an exciting study designed and initially led by Professor Nitin Purandare.
Sadly, Professor Purandare passed away in 2012, so Professor David Challis took over the project lead at the Personal Social Services Research Unit (PSSRU) at the University of Manchester.
Clarissa Giebel, a Research Assistant from PSSRU explains the three main aims of the study: “Firstly, we needed to evaluate existing literature to find out what potential barriers people from a South Asian background face in gaining access to appropriate services for dementia care. Furthermore, we wanted to understand what the recognition and awareness is of memory problems within their own family and/or community.”
“Our second aim was to adapt an existing questionnaire [Barts Explanatory Model Inventory Checklist (BEMI-C)], which looks at cultural variations in how people perceive illness, and adjust it to be specific for dementia and South Asians Finally, we planned to also develop a model to understand how older South Asians perceive the causes, consequences and treatments of dementia”.
After reaching their first stage recruitment target of 30 participants, the PSSRU team were finding it increasingly difficult to find further participants, especially from local NHS Trusts. Clarissa explains why they experienced such a challenge in finding people to participate: “We found it difficult to recruit people, not only because of the nature of the study, but also because there were some language barriers”. The PSSRU welcomed the Network’s help to try and boost recruitment, assist with study delivery and the coordination of the trial.
Angela Aldridge, DeNDRoN Lead Clinical Studies Officer describes how DeNDRoN’s existing relationships with the local NHS Trusts, and having Research Practitioners embedded within the Memory Assessment Services, ensured maximum study exposure, information sharing and effective facilitation of recruitment.
Angela further explains “DeNDRoN’s previous positive promotion of clinical research awareness within community groups, including South Asian community centres in Manchester, helped to expedite welcomed opportunities to participate in research”.
Ambily Sathish is a DeNDRoN Research Nurse who led the study for network,recruiting and interviewing 99% of DeNDRoN participants.
She recalls: “Working on the study, I had an advantage. As a South Asian person from the community, I was able to engage with people of the same cultures, discuss the study openly and empower them to take part. There is currently very little research available reaching the community, so it was very nice to be able to be involved. To overcome language barriers such as Hindi and Urdu, I got in touch with the Indian Association of Manchester for help with translation.
It was a great experience to explore different community groups and the team had a very positive engagement from all of the participants”. Rowen Norton, DeNDRoN Clinical Studies Officer played a pivotal role in coordinating the study from a Network perspective. Rowen communicated how the Network’s involvement helped to exceed the recruitment target, having a total 185 participants enrolled on to the study. This was a wonderful, collaborative achievement.
Although the findings of the research have not yet been published, Clarissa describes how the research fits into the bigger picture, the implications for tackling dementia, and what might it lead to in the future;#: “The PSSRU are contemplating doing a follow-up study. The BEMI-C questionnaire, which we have adapted for South Asians and Dementia (BEMI-D), will be published shortly. We have made it as brief and as simple to use as possible, so it can be applied in a community or clinical setting”.
Clarissa adds, “As South Asians are one of the largest ethnic groups - not only in the UK, but also in other English-speaking countries such as Canada, USA and Australia - I feel that our study shows that all dementia strategies to increase public awareness should be adapted to address cultural barriers.
"This will help to improve our understanding and recognition among ethnic minority groups. Without the Network’s support, we would not have had the numbers required to achieve significant data. Fortunately for us, DeNDRoN helped us to achieve our target, also helping to administer the questionnaires and collect the data needed.”
Tarlok Saini, a treasurer at the Indian Association of Manchester, took part in the SAVE-D study as a participant, and describes what he gained from the experience.
“I felt the study improved our general awareness within the community of how to keep our brains healthy. Although it does depend on an individual’s perceptions, some people may have felt before that it is demeaning or degrading to have this problem and may have not have sought help.”
“It was definitely a simple study to take part in. It just involved visits to peoples’ homes and a lifestyle questionnaire to get peoples’ views on a number of health-related topics”.
“I would strongly recommend taking part in a study such as SAVE-D, as it’s beneficial to find out what the early warning signs might be and it really improved the general awareness amongst people, who took part”.
SAVE-D study participant