2.9 Telling friends and family

Some people chose to not tell anyone about their dementia diagnosis for many months, some people tell others gradually as they see them, some people tell everyone right away.

The Circle of Friends Worksheet can help decide who you’re going to tell about your diagnosis and how you would like to tell them. 

Start by telling the people you feel closest to

This might include immediate family and close friends. These might be the people you want to talk to about your thoughts and feelings about having dementia, and the people who will support you the most, both emotionally and practically.  

When you feel ready, you can tell your friends and extended family, and you may also share the diagnosis with acquaintances you interact with socially such as at clubs or groups.

Tell others how you’d like to be supported

Many friends and family are well intentioned, but do not always know how to support people with dementia in the ways that they’d like. It may help everyone if family and friends are told how the person with dementia would like to be supported.  

Here are some examples:

• “I’m still the same person as before, please talk to me in the same way” 
• “If I’m a little slow or forgetful, please give me time. I’d prefer you don’t correct me – I usually get there at my own speed” 
• “I hope this doesn’t change things. I want to keep hiking with the group”
• “I have trouble with names, so remind me of the names of people we’re going to have dinner with before we arrive”
• “I need my calendar to get organised, so can you please phone me to make plans so I can put it right into my calendar. If you tell me while we’re out, I might forget”

Tell others family and friends how you don’t want to be supported

Some people with dementia feel that their care partners can be over-protective. It may feel like they are doing too much for you, or that they are taking over. When this happens, some people with dementia don’t want to say anything because they don’t want to get into an argument, seem ungrateful, or hurt the other person’s feelings. This can be challenging for everyone. 

Some people with dementia decide to talk to their care partners or extended family members about how they feel and what they’d like to keep doing themselves.

Here are some examples: 

• “I sometimes feel a little useless because you do so much for me. Can I keep doing the shopping even though I may forget things?”  
• “I’ve been thinking about going out for my walk by myself again. I know you like coming along to keep an eye on me in case I get lost, but I’d like to walk by myself sometimes. I can bring my phone and call you if I get lost, but I don’t think I will get lost.” 
• “I know that I missed a few appointments, which is why you’re in charge of my calendar now. I feel like I don’t really have a say in the schedule though. Can I also put things into the calendar?” 
• “I don’t like it when you talk over me when we’re at the doctor. It makes me feel like I don’t have a say in the decision.”