Finding out that your mum or dad, or anyone else close to you has been diagnosed with dementia can feel devastating, confusing, and emotional. While every situation is different, there are practical steps you can take to support your parent and look after yourself.

Here is what I recommend:

1. Learn about the type of dementia

• Understanding whether it’s Alzheimer’s, frontotemporal dementia (FTD), or a rarer form will help you anticipate changes and find tailored resources

• If you don’t feel ready to learn about what might happen next, that’s okay too. It can be a good idea to save a few links that you can revisit when you feel more prepared.

2. Seek support straight away

• Talk to your family, friends, GP, work, or school to see how you can build support around you

• Ask about referral to specialist dementia support programs, especially if your parent is younger

• You might not want or need to engage with support right away but having an idea of where to look when you do need it is crucial. Its not easy to find information when you’re feeling flustered and overwhelmed.

3. Connect with community

• Join the Seeing Dementia Differently Facebook group, for advice from people who understand your situation because they are living it themselves Click Here

• Join us on social media to get quick tips and information in a gentle way Click Here

4. Focus on meaningful engagement

• Encourage activities your mum or dad enjoys and can still do independently

• Communication strategies that focus on connection rather than correction can reduce frustration for both of you

• Find dementia friendly activity groups to participate in near you

5. Take care of yourself

• Being a young carer can be stressful. Make sure you take breaks, ask for help, and maintain your own health

• A young carer shouldn’t be doing the jobs of an adult carer, though we often have to. Ask for help when you need it please

• It is okay to be emotional, this is not easy and no one expects you to be okay

Keep in mind: There’s no “right way” to respond to a parent being diagnosed with dementia. Seeking guidance, building support networks, and taking small, practical steps can make a big difference—for both you and your parent. We are here when you need us.

I offer one-to-one young dementia carer and PCA dementia carer guidance calls. Click on the guidance calls tab to learn more.

I also offer community through sharing personal experiences, dementia science, and tailored support.

As well as years of lived, practical experience caring for my Dad when he was living with Posterior Cortical Atrophy, I have a First Class Honours for my research into Posterior Cortical Atrophy (PCA) and won the British Neuropsychological Society’s Undergraduate Prize 2020.

​During my time working at a rare dementia support organisation and pursuing my PhD at UCL, I wore many hats: from providing one-on-one support calls, to creating a Scottish PCA support group, and coordinating large-scale webinars.

​Today, I’ve pivoted my focus toward closing the support gap. I continue to train in dementia and young carer advocacy because I believe that while researchers work toward a cure, families need a lifeline right now. 

I have spent over 8 years researching PCA dementia and rare dementia academically. I regularly attend training on the subjects of dementia and young carer support and advocacy.

CPD Certificates:

NHS Addressing Emotionally-Based School Avoidance (Feb 2026)

UCL Many Faces of Dementia (Nov 2022)

I haven’t just studied from a book, I have lived it. I have been where you are now, I’ve dealt with the changes in behaviour, the nights of feeling isolated and alone, and wishing there was support. I know the type of support that is needed and I want to offer a service and a community that lets you feel understood.

I am also neurodivergent and therefore, have a unique approach to my work. I can offer very flexible working hours because a typical 9-5 doesn’t suit me, which means I am available at weekends and after 5pm.

Rare dementia refers to less common forms of dementia that account for around 5-15% of all dementia cases.  They often have different symptoms and progression than typical Alzheimer’s disease. For example people living with frontotemporal dementia (FTD), might show mainly behavioural problems first. People with posterior cortical atrophy (PCA), experience primarily visual and spatial problems first.And people living with primary progressive aphasia (PPA), first notice language problems.

Unlike Alzheimer’s and other memory-led dementias, rare dementias may first affect behavior, language, vision, or movement rather than memory. 

This makes diagnosis more challenging because we still need so much more awareness around rare dementias so people don’t miss the early signs.

If you are a young carer supporting someone with rare dementia, it can feel very overwhelming. Many of us are trying to support our loved one, whilst also going to school or work, and learn about their form of dementia.

Seeing Dementia Differently provides personalised guidance, rare dementia information, helpful products, and a community for young dementia carers. For more info, book a 1:1 guidance call with us where we can answer your specific questions.

Tips for young carers of rare dementia:

• Seek tailored advice for the specific type of dementia from places like Dementia UK or Rare Dementia Support

• Join our online community on FB Click Here

• Remember to care for your own wellbeing while supporting someone else

• Reach out to us!

Young-onset dementia (sometimes called early-onset dementia) includes any type of dementia that develops before the age of 65. 

Just like dementia that occurs after the age of 65, it can affect the persons memory, thinking, and behaviour. It might also be a rare form of dementia if it is young onset. Young onset dementia comes with unique challenges because the person who has the diagnosis is probably still working, they might be raising a family, and managing other responsibilities.

Common types of young-onset dementia include Young-onset Alzheimer’s disease, frontotemporal dementia (FTD), Vascular dementia, and rarer forms such as posterior cortical atrophy (PCA) or primary progressive aphasia (PPA). Symptoms could be hard to recognise, and might include changes in mood, problems with decision-making, language, or visual processing.

If you are a young carer supporting someone with young-onset dementia, it can feel overwhelming. Seeing Dementia Differently offers practical support, personalised guidance, and a community for young dementia carers. For more detailed information, please take a look at our guidance call page.

Tips for young carers of people with young-onset dementia:

• Learn about the specific type of dementia 

• Join our community on FB Click Here

• Remember to care for your own wellbeing while supporting someone else

• Reach out to us!

You can reach me anytime via the contact page or email. I always aim to get back to you within 2 working days!

You can also reach out via social media like TikTok or Instagram if you prefer.