Many people living with dementia and their partners experience fulfilling sexual relationships. However, some may feel pressured into intimacy by their partner living with dementia.
This is one of the most overlooked and emotionally complex realities of heterosexual or same sex partner/spousal relationships at home.
If you are interested in this topic, we would love to hear from you.
Via EMPOWER Dementia Network+ we are applying for funding to develop a booklet to raise public awareness, provide context and guidance.
To support our application we are at this stage interested in capturing general interest. Please check out the FAQ below for more info.
What Happens Next?
Once you have signed up, you'll receive an occasional email about for instance our application progress and naturally the outcome.
We will mention in our funding application how many people have signed up, but not identify you individually. If we are successful in receiving the funding you will receive an invitation to take part in the research project. This is not compulsory. You are equally welcome to simply be kept informed only.
You'll always have a choice to what extent you wish to be involved. You can unsubscribe at any time.
The booklet we aim to develop via this funding will be co-produced by people with lived experience, working professionals, researchers and community organisations.
That's why our funding application project team also consists of a variety of stakeholders:
I am a family caregiver, person with lived experience, Empower Dementia Network volunteer and am studying to become a doctor.
Based on my personal experience I am surprised to see that so many family caregivers are suffering due to emotional numbness that can occur many years before a formal dementia diagnosis.
I am a Dementia Research Fellow at the University of Kent, specialising in dementia care, social care, and palliative care. I have over 14 years of experience as a dementia care worker.
I believe the best way to create effective support is by putting people's lived experiences at the forefront. This matters especially when it comes to 'taboo' subjects, such as this one, that are hard to talk about and too often ignored.
I am a Chartered Psychologist (academic and practitioner) and an Associate Fellow of the British Psychological Society and a member of the BACP (British Association of Counselling and Psychotherapy) senior accredited. I am an Honorary Associate Professor at UCL.
As result of my latest research in hyper sexuality I was shocked that there's no support for people living with dementia and their carers who are experiencing this distressing situation.
I am Symbiosia's Founding Director with nearly 20 years working in dementia care. My 'Advanced Care in Dementia' MSc dissertation led me deeper into the complexity of the expression of sexuality when someone has dementia-related reduced capacity, under UK law.
I am intrigued by the tension field between the importance of being able to freely and authentically experience intimacy and how to positively balance this within the interaction and boundaries of the other person you interact with.
Project Legal Advisor
I am a barrister, Professor of Practice at the Dickson Poon School of Law, King’s College London, a Visiting Professor at the Geller Institute of Ageing and Memory, University of West London, a Visiting Senior Lecturer at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London and a Research Affiliate at the Essex Autonomy Project, University of Essex, with a focus on mental capacity, mental health and healthcare law.
The EMPOWER Dementia Network+ is a national network committed to addressing inequalities in dementia care and research. We do this by using co-production to engage and include underrepresented groups in dementia research, services, and policy. Funded by Alzheimer’s Society, Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR), we bring together lived experts, community partners, researchers, and health and care professionals from across primary, social dementia, and palliative care to co-develop inclusive, impactful solutions.
Our deadline to submit the application is 7 January 2026.
We will be informed by the funders in February 2026 whether we are successful.
If we are, then the project starts in March 2026.
Those that have indicated that they would like to attend our focus group meetings will receive an invitation in April 2026.
The focus group meetings will be virtually and in-person in June/July 2026.
The opportunity to comment on the draft versions will be around October/November 2026.
The project concludes December 2026/ January 2027 when the booklet will be disseminated across the UK.
We are conscious that this topic may bring up unpleasant memories and or cause emotional upset. If this happens to you we recommend talking to someone you feel that you can trust, your GP.
The Samaritans charity also offers 24/7 a non-judgemental listening ear. You can call them any time, from any phone for free via: 116 123
For more ways to contact, check their website: Contact Us | Samaritans
Up to 17% of people diagnosed with dementia experience some form of hyper-sexuality or altered sexual behaviour.
A subject that is often not easily discussed, even though it can deeply affect many couples and families.
Positive, consensual intimacy strengthens relationships and supports emotional wellbeing.
Dementia can change how sex and intimacy is experienced.
Sometimes this can become quite challenging.
One of the worst-case scenarios is that it leads to sexual coercion, a phenomenon that is rarely acknowledged, yet has profound consequences, especially when hidden behind the privacy of closed doors at home.
Without open discussion, people can feel isolated, uncertain, or unsupported.
The booklet, for the public and professionals, aims to raise awareness and reduce stigma.
The funding that we are applying for will only cover the development of a co-produced e-booklet. We realise that this comes with limitations. Nevertheless, we do feel that it is a positive first step.
Within our application we will indicate how future funding opportunities can expand the impact, so this sensitive topic will be better recognised, so those affected, now and in the future, will feel supported.
The booklet will be for anyone who might want to learn more about this topic: the public, people living with dementia, their family relatives, and we like to think that professionals will find it useful too.
We will design it by using the Participatory Action Research Methodology, which means creating it together (co-produced) with people who have a personal or professional interest in this topic, so their lived experiences shape and refine the content.
That depends on how involved you’d like to be:
Just staying informed: about 7 emails between sign‑up and January 2027.
Joining activities (e.g. booklet development or focus groups): around 12 emails.
Opting in to hear more about Symbiosia: a few more, but only if you choose to sign up additionally to this option.
Good to know: we’re a small social enterprise, and we promise not to spam you!
The email in which we share the outcome contains an unsubscribe option which removes your name and email from our system permanently.
If you choose to continue subscribing to our emails, your name and email address will be stored according to GDPR.
Symbiosia Community Interest Company is a social enterprise, registered in England and Wales: 13366499.
We have an ambitious vision for a new residential social care model for the UK, fun for people and planet. Explained in this video in less than 2 minutes:
It’s no mean feat to develop Symbiosia. The past couple of years have been a steep learning curve!
We aim for our next step to be a small, fixed place that we can call home, deliver our our Community Programme, offer in-person (day) support to family caregivers and people living with dementia, events for everyone and training.
Developing this small initial step requires regular income and support.
This is what you can do to make it happen :)
Play our £1 weekly lottery, and have a chance winning the £25,000
Check out our affordable e-resources for family caregivers.
Share our engaging and well received Corporate Wellness training offer with your contacts.
Get in touch for our virtually delivered Social Care training, which includes subjects such as dementia, dementia & sexuality, domestic violence, gaslighting and many more challenging topics, sensitively and interactively delivered by Esther.
Connect with our Socials :)
Treat yourself or someone else to this light-hearted, cheerfully illustrated Mindfulness for Caregivers booklet:
You are welcome to email Esther Wiskerke via: info@symbiosia.org.uk
As we are a tiny social enterprise, and depending on how many queries we receive, it may take a little while to get back to you.