Development and evaluation of a toolkit to improve access and diagnosis of dementia in memory services for British Urdu speaking population

Lead Research Organisation: University of Manchester
Department Name: School of Health Sciences

Abstract

Validation Study: Following a robust methodology and user involvement we have already developed ACE III Urdu. We will now aim to validate ACE-III Urdu in 100 British Urdu speakers. We will recruit 34 participants with frontotemporal dementia (FTD), 33 with Alzheimer's disease (AD) from memory clinics across the Greater Manchester area, along with 33 healthy participants to form a control group. All participants will be administered the Urdu ACE-III and their scores calculated and validated against clinical diagnosis documented by memory clinics.

Implementation Study: To develop a toolkit consisting of the Urdu ACE-III and various resources that will address issues within memory clinics in terms of the service provided to British Urdu speaking service users. Problems and potential solutions will be identified and used to develop the toolkit which will then be implemented and evaluated in memory clinics across the Greater Manchester Area:

1. a. Development of the toolkit
Two focus groups will be conducted with staff members of memory clinics. We will discuss their experiences interacting with British Urdu speaking service users within memory clinics, issues that have arisen, current protocol for addressing these issues, and any gaps in training and resources and their proposals for potential solutions.

We will also conduct ten semi structured interviews of British Urdu speaking memory clinic service users, regarding their user experience from the point of entry into the memory clinic, including the diagnostic process, to their official discharge from the memory clinic.

Focus groups and interviews will be audio recorded and transcribed verbatim. Transcriptions will undergo a thematic analysis to identify barriers and facilitators.

This combined information will allow us to develop materials for the toolkit that will include staff training, culturally sensitive guidelines and information materials for British Urdu speaking memory clinic attendees.

2. b. Implementation study
We will implement this toolkit in 2 memory clinics in the Greater Manchester area and evaluate its effect using a before and after design on completion and quality of dementia assessment. We will also explore staff and user satisfaction with the culturally sensitive toolkit.

Potential Outcomes:
1. A validated psychometrically robust neuropsychological assessment ACE III for detecting dementia in British Urdu speaking populations.
2. A toolkit that addresses gaps identified by staff and British Urdu speaking memory services users by providing culturally appropriate training and solutions.

Publications

10 25 50
 
Description "What does dementia mean to you?" stall at Science Uncovered European Researchers Night 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Primary and secondary school children attended the Manchester Museum 'Science Uncovered' event, which involved approaching stalls in the 'I Love Research' segment. This event was also open to members of the general public. I had a stall on 'Dementia and ethnic minorities', which allowed both children and adults to try their hand at questions and tasks from traditional cognitive assessments, and then culturally adapted versions.These were presented through flashcards. This highlighted how their performance dropped when their language and culture did not match that of the assessment. I had also prepared child-friendly leaflets for anyone to take away, on 'How to prevent dementia', and 'Dementia and ethnic minorities'. Children and adults asked questions about dementia (what it is, how it happens, who it can happen to) and we discussed the difficulties ethnic minorities face in dementia services and the changes we could make to make these services more accessible for them. Adults reflected on how the difficulties ethnic minorities face in dementia services feel obvious once they were made aware, but it had to be pointed out to hem before they realised it was a problem.
Year(s) Of Engagement Activity 2019
 
Description "What does dementia mean to you?" stall at University of Manchester Community Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact The general public attended the University of Manchester Community Festival, which involved approaching stalls. Both children and adults tried their hand at questions and tasks from traditional cognitive assessments, and then culturally adapted versions.These were presented through flashcards and a prize winning activity. This highlighted how performance dropped when language and culture did not match that of the assessment.

There was also a virtual reality experience of dementia using Google Cardboard developed by ARUK called "A Walk Through Dementia" and a prize draw opportunity that could be entered by drawing a representation of dementia or what it means to you.I had also prepared booklets for anyone to take away, on 'Dementia and ethnic minorities'.

Children and adults asked questions about dementia (what it is, how it happens, who it can happen to) and we discussed the difficulties ethnic minorities face in dementia services and the changes we could make to make these services more accessible for them. Adults reflected on how the difficulties ethnic minorities face in dementia services feel obvious once they were made aware, but it had to be pointed out to them before they realised it was a problem.
Year(s) Of Engagement Activity 2019
 
Description Attended the "Social Coffee Hour - Ask your questions, meet some early career researchers" as a speaker and guest for the Dementia Research Careers Festival by Dementia Researcher 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Undergraduate students
Results and Impact The NIHR's Dementia Researcher held a Dementia Research Careers Festival for National Career's Week 2021, which included a virtual "Social Coffee Hour" where school and undergraduate students could meet with dementia researchers' to learn about the career pathways and experiences. I volunteered as a guest to interact with students and researchers.
Year(s) Of Engagement Activity 2021
 
Description Blog for University of Manchester Research Hive 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Wrote a blog post for the University of Manchester Research Hive blog for postgraduate students of the Faculty of Biology, Medicine and Health. The psot was titled 'Whether dementia discriminates or not addressing it definitely does'. The post described the prevalence of dementia in British South Asians, why it is so high and some of the reasons for why despite a high prevalence, British South Asians present to memory services at a very low rate. The post also explained the experiences of British South Asians once they were able to access these services and why improvement is needed, along with a brief explanation of what my PhD hopes to achieve.
Year(s) Of Engagement Activity 2018
URL https://manchesterresearchhive.wordpress.com/2018/10/18/whether-dementia-discriminates-or-not-addres...
 
Description Blog for the University's Biology, Medicine and Health Student Blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Wrote a blog post for the University of Manchester Biology, Medicine and Health Student blog.The post was titled 'Advancing my mental health research on the MRC DTP'. The post describes why I chose the MRC DTP scheme for my PhD, what my PhD is about and what it hopes to achieve, my PhD experience so far, and my experience of Manchester.
Year(s) Of Engagement Activity 2020
URL https://manchesterbmhstudents.wordpress.com/2020/10/13/advancing-my-mental-health-research-on-the-mr...
 
Description Delivered a webinar on behalf of the British Society of Gerontology on "Crafting the next Stirling Prize poster: A digital master class" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact After winning the Stirling Award for Best Conference Poster two years in a row, The British Society of Gerontology Emerging Researchers in Ageing group asked me to deliver a webinar on crafting conference posters for the society. I delivered a 1 hour webinar on how to select the necessary and appropriate content for conference posters and design an effective conference poster using easy and basic principles of visuals and colours.
Year(s) Of Engagement Activity 2020
URL https://www.youtube.com/watch?v=8wuKi_e1dg8&t=680s
 
Description Facilitated "Public Engagement" workshop for first year MRC DTP students 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Acted as a co-facilitato, delivering a presentation on my experiences of public engagement to the 2019 cohort of first year MRC DTP students.
Year(s) Of Engagement Activity 2020
 
Description Facilitated "Public Engagement" workshop for first year MRC DTP students 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Acted as a co-facilitato, delivering a presentation on my experiences of public engagement to the 2020 cohort of first year MRC DTP students.
Year(s) Of Engagement Activity 2020
 
Description Facilitated "Public Engagement" workshop for first year Wellcome Trust students 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Acted as a co-facilitator, delivering a presentation on my experiences of public engagement to the 2020 cohort of first year Wellcome Trust students.
Year(s) Of Engagement Activity 2020
 
Description Guest spoke for the Dementia Research Chatathon, held by NIHR Dementia Researcher, in aid of Alzheimer's Research UK 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I volunteered to be a speaker for the Dementia Research Chatathon (https://chatathon.uk/), organised by NIHR's Dementia Researcher to raise money for Alzheimer's Research UK. The event ran for 12 hours with half an hour segments on different topics around dementia. I featured as a guest speaker alongside a Senior Research Fellow in the segment "Improving through research, ensuring ethnicity does not impact diagnosis and care", which focused on improving dementia diagnosis, services and care for ethnic minorities, as well as their recruitment to research.
Year(s) Of Engagement Activity 2020
URL https://www.youtube.com/watch?v=CNLSxPwQPPk
 
Description Guest spoke on a panel discussion for the online event "Mental Health and removing the Stigma in Pakistan Community" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I guest spoke on a two hour panel for the Pakistan Club on Apple's Clubhouse, on "Mental Health and removing Stigma in Pakistan Community" where I discussed stigma regarding mental health in South Asian communities, the role of spirituality in mental health and its maintenance and treatment, and about my research around ethnic minorities and dementia and their experiences of diagnosis, misdiagnosis and underdiagnosis, and services that aren't culturally sensitive. I also answered questions for the audience from the UK, USA and Pakistan.
Year(s) Of Engagement Activity 2021
 
Description Guest spoke on the "Why Aren't You A Doctor Yet?" podcast on dementia and ethnic minorities 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I was invited as a guest on the "Why Aren't You A Doctor Yet?" podcast for their special episode on Dementia, where I spoke about dementia in ethnic minority communities, with a focus on British South Asians, my research on dementia memory services and ethnic minorities' access to them, and how to include ethnic minorities in dementia research.
Year(s) Of Engagement Activity 2020
URL https://play.acast.com/s/whyarentyouadoctoryet/episode47-dementia
 
Description I Love Research stall (Science Uncovered, Manchester Museum) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact Primary and secondary school children attended the Manchester Museum 'Science Uncovered' event, which involved approaching stalls in the 'I Love Research' segment. This event was also open to members of the general public. I had a stall on 'Dementia and ethnic minorities', which allowed both children and adults to try their hand at questions and tasks from traditional cognitive assessments, and then culturally adapted versions.These were presented through flashcards. This highlighted how their performance dropped when their language and culture did not match that of the assessment. I had also prepared child-friendly leaflets for anyone to take away, on 'How to prevent dementia', and 'Dementia and ethnic minorities'. Children and adults asked questions about dementia (what it is, how it happens, who it can happen to) and we discussed the difficulties ethnic minorities face in dementia services and the changes we could make to make these services more accessible for them.
Adults reflected on how the difficulties ethnic minorities face in dementia services feel obvious once they were made aware, but it had to be pointed out to hem before they realised it was a problem.
Year(s) Of Engagement Activity 2018
 
Description I'm A Scientist - Get Me Out of Here! online event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact I'm a Scientist is an online activity where school students connect with scientists. It's an X Factor-style competition between scientists, where students are the judges. I participated in the Medical Research Zone, funded by the Medical Research Council.
Year(s) Of Engagement Activity 2020
URL https://imascientist.org.uk/
 
Description I'm A Scientist - Get Me Out of Here! online event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact I'm a Scientist is an online activity where school students connect with scientists. It's an X Factor-style competition between scientists, where students are the judges.
I participated in the Memory Zone for psychologists, funded by the British Psychological Society, and was a finalist and came in second for the zone.
Year(s) Of Engagement Activity 2018
URL https://imascientist.org.uk/
 
Description Lightning Talk at Science Uncovered (European Researcher's Night, Manchester Museum) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact I presented a 5 minute 'Lightning Talk' to an audience of approximately 15+ members of the general public and postgraduate students attending the Science Uncovered- European Researcher's Night event at the Manchester Museum. The talk was on 'Why are people from different cultures not getting help for dementia?' and was meant to give the audience an understanding of why my field was important and why I am conducting research in this specific area. I spoke about the struggles ethnic minorities face within dementia services, giving a few examples, to an adult audience. Questions were asked after the session which allowed for discussion on how different ethnic minorities may experience a difference host of issues.
Year(s) Of Engagement Activity 2018
 
Description Organised, implemented and participated in the UoM MRC Science Show 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact After participating on the Twitter based Global Science Show twice, on behalf of the Unviersity of Manchester's MRC DTP Student Committee I organised and implemented a similiar style thread based science show - the UoM MRC Science Show. I advertised this to MRC funded PhD students across the UK, in various cohorts, where they could submit a poster, write a blog, produce science art, create threads on their research and science communication or summarise their papers, and on the day they would tweet their work with the hashtag #UoMMRCScienceShow at a scheduled timeslot. I added their work on to the main Science Show thread to be viewed by the public.
I also participated in the Science Show my producing a thread on including ethnic minorities in dementia research.
Year(s) Of Engagement Activity 2020
URL https://twitter.com/UoM_MRC_DTP/status/1326828004039864322
 
Description Radio interview with North Manchester FM 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Gave an interview for North Manchester FM at the University of Manchester Community Festival on dementia in ethnic minorities and tips for mental health as a part of their segment on chronic illnesses in underrepresented communities.
Year(s) Of Engagement Activity 2019
 
Description Talk at University of Birmingham's Eary Career Researcher's Academic Group (ECRAG) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact I presented a 40 minute talk, followed by a question and answer session, to postgarduate research students and other academics at the University of Birmingham ECRAG talk. The title of my talk was 'Almost There: Dementia, South Asians and the PhD Journey' and it gave the audience an understanding of dementia and its prevalence in British South Asians, what the current services are like for them and their struggles, and why my PhD project is needed, along with that I plan to do. Questions were asked after the session which allowed for discussion on recruiting ethnic minorities to research studies, what my experience of working with South Asian participants has been like, and what the future implications of this research may be.
Year(s) Of Engagement Activity 2019
 
Description Video interview with Traces Dreams 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Traces Dreams conducts multidisciplinary video interviews with a variety of scientists and researchers on the work that they do, its impact and their experiences of working in science.
Year(s) Of Engagement Activity 2018
URL https://www.tracesdreams.com/phdstory-nadine-mirza/
 
Description Video podcast with Ageing Bites by the British Society of Gerontology 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Conducted a near 7 minute podcast for the British Society of Gerontology for their Ageing Bites channel. The podcast was on 'Adapting Cognitive Assessments for Ethnic Minorities' and I spoke about why the current cognitive assessments that are in use in health services are not culturally understandable and acceptable for those from different cultures and ethnic backgrounds and how this leads to higher rates of false positive and false negative dementia diagnoses in ethnic minorities. I then explained how my research had looked into culturally adapting an assessment and how this was done.
Year(s) Of Engagement Activity 2019
URL https://www.youtube.com/watch?v=HLaZmcL3YS4