Talk to relatives

We know it can be hard to talk about Dutchtype CAA with family members. People tend to deal with it in very different ways and some don’t even want to hear about out it at all. We understand that, truly. However: a potential treatment helps all of us. And we cannot stress it enough: the time is now. Right now (as of July 2023) we are having active discussions with Alnylam and Regeneron about including DCAA families in a drug trial with ALN-APP.

This means participants might have early access to a drug that slows down the disease (if successful). For this to happen in Australia, we need more people to participate in TRACK DCAA. This is why we aks you to think about opening up the conversation with family members that might be eligible for participation. To help you to open up the conversation, here are a few tips how:

1. Make sure you prepare your family member for the topic of conversation

You might want to send them a message upfront, asking if they are willing to talk to you about it. It might help to be understanding of the sensitivity of the subject and approach it saying “I know it is hard to talk about, I feel the same, but….” or anything in your own words that feels right.

2. Inform your relative that they do not need to be aware of their gene status to be part of the study and will never know through participation if they don’t want to

Many of us don’t want to know about our genetic status and that is perfectly alright. Therefore we have made sure that the study protocol allows us to blind your genetic status to yourselves and the researchers. This way, no one will find out their genetic status if they do not want to.

3. Ask us for input

We are very happy to answer any question you need answered before having a conversation with family members. And remember: there are no stupid questions.

4. If you are talking to your children, they might have many questions

The best way to approach a conversation is to be as open as possible. Make sure you tell them what DCAA is, how it has affected you and your life, how it may affect theirs and answer their questions to the best of your ability. If they have more questions, you can refer them to the research team (Samantha Gardener), our patient advocate (Sanne van Rijn) or neurologist (Daniel Clarke). We can also help them with questions around genetic testing.

5. Refer family members to the HCHWA-D website

www.hchwa-d.nl/en/ is the website of the patient association. Here they can find lot of information about the disease, its effects, genetic testing, having children, finding support and healthcare, etc.

6. Inform them about the unique opportunity for the development of a possible treatment

This is the first time in our lifetime that there is actually a potential treatment on the table. Although drug development is not straightforward and it is early days, it is an opportunity to get access to a drug that might slow down the disease in gene carriers. Tell your family members that if you want a potential treatment for themselves and their family members in the near future, it is vital that they participate in research in Perth. It is also good to be aware of the fact that chances like this don’t come around every day or year or even decade. We are truly in a unique position to work together in making it possible to slow Dutchtype CAA down.

7. If you are part of DIAN and/or TRACK DCAA, tell them about your experience

First of all: thank you! Your participation means a lot. It will help others to know what they are signing up for, if you tell them from experience what it is like.

8. If you find it hard to talk about DCAA and feel burdened about talking to family members, make sure there is someone there to support you.

If you have a backup, use them! Is there a partner, a sibling or maybe one of your children you feel very comfortable with, who can support you? Ask them to be part of the conversation.

Thank you so much for making the effort! We really appreciate your contribution to the possibility of a drug trial, we could not do it without you.