Three women standing and smiling in front of a Rushcliffe Dementia Network Action board
Yesterday our Nottingham team presented at RDAN’s (rdan.org.uk) Annual General Meeting 🎉 We shared our Seldom Heard Voices study, learnt about RDAN’s work, and connected with local organisations supporting people with dementia and their families. Learn more here: determind.org.uk/seldom-heard...
Do you know someone living with dementia who is from an ethnic minority background, and/or part of the LGBTQIA+ community?
Over the past few months, we have been busy recruiting for our new 'DETERMIND - Seldom Heard Groups' study.
Read more and get in touch here: determind.org.uk/seldom-heard...
Our website has had a makeover! 🌟
Interested in finding out more about the DETERMIND study? Head over to determind.org.uk to see how you can get involved, read our publications and meet our team.
We will be adding more exciting DETERMIND updates and news to our website soon, so keep an eye out!
Transgender rights = human rights.
In many countries around the world, the rights of trans people are under attack.
This International Transgender Day of Visibility, we continue to work for a world where all people can enjoy their rights fully.
A picture of all hand holding up a DETERMIND Study flyer, in front of the Age Concern Eastbourne building.
Today we joined Eastbourne Rainbow at Age Concern Eastbourne to share our DETERMIND Seldom Heard Voices study. Thanks for the warm welcome and great conversations! 🌈
Learn more or get involved: determind.org.uk/seldom-heard...
#DementiaResearcg #LGBTQIA #SeldomHeardVoices
DETERMIND logo with a banner saying 'Eid Mubrak' below with gold cresent moon
On behalf of DETERMIND, we want to wish a Happy Eid to all who celebrate!
We are pleased to share a short film capturing key moments, insights, and reflections from our recent in-person event exploring the connections between LGBTQIA+ experiences and dementia. youtu.be/Oav6fIASO44
A poster for recruiting people living with dementia from underserved communities to a research study. The poster reads: "Understanding and improving care pathways for minoritised ethnic groups diagnosed with dementia. Are you from a minoritised ethnic group? Have you received a diagnosis of dementia in the last six months, or have you been caring for someone who has had this diagnosis? If so, can you help us improve the care pathways for people in your community? Would you like to contribute to this new research on understanding and improving dementia care pathways for minoritised ethnic groups diagnosed with dementia? We want to learn from your experiences so we can address inequalities in the dementia care pathway. This will help deliver inclusive care and support for everyone, maximising a better quality of life for all communities. The research involves: - A pair of researchers visiting your home or somewhere you feel comfortable to talk about your experiences, your health, your memory and your wellbeing. - A friend or family member being present if you so wish. - The questions will not last longer than two hours, and we will work around your schedule to accommodate your timing. There are no right or wrong answers - we want to learn from your experiences. For more information contact Ben at: ben.hicks@nottingham.ac.uk 07881915776." In the top right corner of the poster is the DETERMIND logo, which has a green illustration of a signpost on it and says DETERMIND in green font and the strapline 'finding a fairer path to dementia care' underneath. There are three images of people from different ethnicities on the flyer. One is of a woman smiling, she has a bindi on her forehead. One is of a man hearing a hat and glasses, and the third is of an older man and a younger woman. The National Institute for Health Research (NIHR) logo is in the bottom right corner of the poster.
Are you from an underserved ethnic or religious community and have you or someone you know recently received a dementia diagnosis?
Join our study aiming to understand how we can address inequalities, improve care and wellbeing, following a dementia diagnosis!
Find out more: lnkd.in/ee8VEf-5
A leaflet for recruiting LGBTQIA+ people living with dementia to a research study. The leaflet reads: LGBTQIA+ and affected by Dementia? We want to hear from you. The DETERMIND study is creating the UK's largest research group of LGBTQIA+ people living with dementia, to help shape more inclusive dementia care. Your experiences can help improve understanding and support for other LGBTQIA+ people affected by dementia. To learn more or get involved, contact us at: ben.hicks@nottingham.ac.uk or mobile 07881915776.
The second side of the leaflet, which reads: Who can participate? Anyone who identifies as LGBTQIA+ and has received a diagnosis of any dementia and any member of your chosen family. What will it involve? A friendly chat with one of our research team about your experiences of dementia, your views on the services you may use and your general sense of well-being and life quality. The discussion can take place at your home or remotely and should last no longer than 90 minutes. A friend or member of your chosen family can be present during the visit and can also take part if they wish. How can I find our more? Learn more about the study at www.determind.org.uk Contact Dr Ben Hicks for more information on the study and register your interest: ben.hicks@nottingham.ac.uk or mobile 07881915776. Use your voice to help shape a more inclusive future for UK dementia care and leave a positive legacy for future generations of LGBTQIA+ people living with dementia.
🏳️🌈 We're recruiting the largest UK cohort of LGBTQIA+ people living with dementia! 🏳️🌈
In interviews about quality of life, service use and memory, we will:
🌈 Amplify LGBTQIA+ voices
🌈 Identify priorities for improving care
🌈 Address inequities
Please do get in touch if the study is of interest!
Nine people stood to take a group picture. Two of the group are kneeling in front. They are all looking towards the photographer. They are standing in a warm, brightly lit room with a presentation slide projected behind them. The presentation slide reads 'Spotlight on LGBTQIA+ and dementia' with an inclusive rainbow flag picture.
A room full of people watching somebody present at the front. The presenter is holding a microphone and smiling. She is one of the DETERMIND team and is wearing a dark top and light cardigan and trousers. The slide she is presenting describes the DETERMIND study so far and has an illustration of a countryside bridge with a green pathway, as well as a photograph of two warm cups of tea.
A room full of people watching somebody present at the front. The presenter is holding a microphone. He is John Hammond, presenting his research on the voices of LGB DETERMIND participants. There is a table with his findings highlighting the challenges of identity disclosure to services, the importance of resilience and chosen families, as well as people's concern over the absence of specific support for future care needs.
A room full of people watching somebody present at the front. The presenter is holding a microphone and looking out into the crowd. They are a member of the DETERMIND team. They have tattoos on their arms and glasses on. They are wearing a dark top and trousers. The slide they are presenting is called 'DETERMIND: a person-centered approach'. It has an illustration of Brighton pier, with a green pathway running up to the arcade. There is also an illustration of an hourglass. The slide says that DETERMIND takes a person-centered approach as it has increased the recruitment timeline to allow anyone to join at any point after a diagnosis. The study also engaged with the community to share the study opportunity and resources. It also offers flexible visit times to fit in around schedules.
Some photos from our LGBTQ+ and dementia engagement event last Wednesday! It was great to present on research approaches from the DETERMIND study's perspective.
Thank you to @spindnetworkplus.bsky.social for giving us the platform, and for bringing the community together to make change possible!
Our in-person event exploring connections between LGBTQIA+ and Dementia, with a particular focus on brain health and addressing inequities, is next week! 🎊
📅Wednesday 25th, 10:45am-4:30pm, St Lukes Community Centre, EC1V 8AJ
Don't forget to register here: lnkd.in/eP8iZGiN
Aromantic Spectrum flag, green colours at the top, white in the middle and black at the bottom
#AromanticSpectrumAwarenessWeek highlights people who identify on the aromantic spectrum. In dementia care, assumptions about partners and family can mean important friendships and chosen family are overlooked. This week reminds us to recognise different ways people build meaningful relationships. 💚
Three weeks to go!
Join us for a day of exploring connections between LGBTQIA+ and Dementia, with a particular focus on brain health and addressing inequities.
Register via this link: spindementianet.org/spotlight-on...
The DYNAMIC project at @dementiaatbradford.bsky.social has shared some excellent co-produced resources for managing the financial challenges of living with young onset dementia.
You can download their leaflet here: www.youngdementianetwork.org/wp-content/u...
#YoungOnsetDementia
Introducing Research Assistant, Kat!
Kat works on the DETERMIND project at the Sussex Partnership NHS Foundation Trust, having previously worked in Children and Adolescent mental health services. She holds a Psychology MSc and has a strong professional and personal interest in dementia.
Today is often known as 'Blue Monday'. But, it is also #BrewMonday. An opportunity to turn not just today, but every day, into a reason to slow down, take note of your emotions, and to share and listen to others about how you're feeling.
To find out more, visit www.samaritans.org/support-us/c...
Register for our in-person engagement event on LGBTQIA+ and dementia! 🌈 At this knowledge exchange event we will come together to explore how we can address inequalities through research and practice.
More information and registration link here: spindementianet.org/spotlight-on...
To tackle inequalities for people living with dementia, the EquaDem Network is hosting a free public networking meeting at the end of the month in Nottingham. Attendees will have the chance to discuss how to reduce inequalities together.
Register here: www.eventbrite.co.uk/e/equadem-ne...
#EquaDem
A recruitment poster for the DETERMIND user and carer reference groups. It features the DETERMIND study signpost logo, as well as white text on a green background saying: Get in touch if you have a diagnosis of dementia or current/recent caring experience for someone living with dementia who identifies as part of an ethnic and/or religious minority background OR identifies as part of the LGBTQIA+ community!
If you have current or recent caring experience for someone living with dementia, email luce.stewart@kcl.ac.uk! We are recruiting people with dementia, or carers of people with dementia who identify as from religious and/or ethnic minority backgrounds or those who are part of the LGBTQIA+ community.
Flyer for an event. The text reads 'Spotlight on LGBTQIA+ and dementia: Exploring brain health and addressing inequities Inviting people with all levels of knowledge and interest including researchers, funders, people with dementia and carers, co-ordinators, managers, and providers. Wed 25th Feb 2026 10:30am to 4:30pm In-person event Supported attendance Accessible London venue Sharing research, practice gaps, and knowledge Sharing lived experiences Finding resources Identifying actions and impact Building networks & collaborations Learn, Share, Discuss Limited numbers. Please register interest by scanning the QR code or visit https://spindementianet.org/spotlight-on-lgbtqia/ Questions? Email: spindnetworkplus@live.ac.uk. In the top right hand corner of the flyer is the Progressive Pride Flag. At the bottom of the flyer are the Spin Dementia Network +, tide, innovations in dementia, DETERMIND, URKI, NIHR, University of Exeter, UCL and Alzheimer's Society logos.
Save the date!✨ We are delighted to have teamed up with @spindnetworkplus.bsky.social, Innovations in Dementia, and tide (together in dementia everyday) to bring you this exciting event focusing on LGBTQIA+ and dementia.
Register and find out more: spindementianet.org/spotlight-on...
Research presented by @kategridley.bsky.social at our participant conference found that the COVID-19 pandemic and associated lockdowns had a huge impact on both health and social care service delivery and social environment for people with dementia.
Read more here: shorturl.at/EDkF1
Two people sitting at their office chairs, both smiling and laughing. One has their arm outstretched with a cockatiel sat on their wrist. The cockatiel has a grey body and wings, with a yellow head and bright orange circle on his cheek.
Meet Corbyn!
Corbyn is a very friendly cockatiel and the official mascot of the SLaM Brain Health Clinic, a memory clinic using biomarkers to help people with mild cognitive impairment. We're very lucky to share an office with the BHC team at our London site!
#BrainHealth #Dementia #SLaM
A selfie of Jessie, a new Research Assistant for the DETERMIND project. She is wearing a white t shirt and silver jewelry and glasses on top of her head. The room in the background looks homely with plants in one corner and a globe on top of a wooden cabinet in the other.
Introducing new Research Assistant, Jessie! Welcome to the team!
Jessie has a strong interest in LGBTQ+ experiences of dementia and will be supporting the ‘Seldom Heard Voices’ project, helping to better understand the experiences of underrepresented groups following a dementia diagnosis.
'Healthist' attitudes, implying dementia is preventable through an healthy lifestyle choices, often stigmatise specific diagnoses. Media may be 'assigning blame', rather than 'providing hope', focusing on personal risk factors, rather than population risks.
onlinelibrary.wiley.com/doi/10.1111/...
A written piece about UK Disability History Month. It reads: UK Disability History Month is a chance to reflect on the theme, "Disability, Life and Death". Over the last year, there have been growing, concerning conversations on the value of disabled lives in policy, laws and society. When speaking to people living with dementia and those who support them, it is clear they are experiencing the knock-on effects of policy. Changes to PIP eligibility, NHS privatisation and funding for local community groups all have significant impacts on wellbeing. Managing one’s own health with a lack of support is a common experience, but one that nobody should have to go through. So, we would like to take the opportunity this month to celebrate the immense resilience from this community, both past and present. Reflection is only impactful if it reaches beyond this month and into practice. Within research, those with disabilities should be prioritised in designing projects and never face challenges to being part of them. Only then can we capture the most relevant concerns and use these to influence policy and change.
A group of six large sheets of paper with feedback from study participants. At the base of each sheet are illustrations of pathways across the study sites, including London, Brighton Beach and rural fields.
A researcher presenting in front of a bright green slide titled 'Discussion time'. She is asking for feedback from study participants and looking out towards the crowd.
What do our participants think of DETERMIND? At our recent conference, we gathered feedback and generated new ideas for future involvement! #dementiaresearch
In this blog post @kategridley.bsky.social shares learnings from the DETERMIND project about challenges people living with dementia and those who support them face in navigating the social care system.
📖Read it here:
swopresearch.wordpress.com/2024/10/07/n...
Register for this webinar and listen to @isaac-dc.bsky.social talking about findings from the DETERMIND study on coping styles and help seeking in #dementia!
shorturl.at/AFPX9
Looking for an opportunity to be involved in dementia research?
Our DETERMIND PhD student, Alice Russell is keen to chat to people living with dementia and their supporters about receiving their diagnosis.
Reach out to Alice (a.russell@bsms.ac.uk) to take part!
#dementiaresearch #researchopportunity
A screen at a conference displaying a table titled 'costs of health and social care services (per year). There are two people looking at it in the foreground of the photo.
A group of people sat at chairs in staggered seating listening to a talk at a conference. They are facing side-on to the camera.
Did you know that people living with dementia are more likely to report inadequate support from care services if:
Their carer is younger, they have more functional limitations, live in a rural area or have mixed dementia compared to Alzheimer’s disease?
More info from our conference coming soon!