Living well - Communication - How to talk to family, friends and neighbours

Although this news is difficult, sometimes people feel relieved to know the diagnosis has taken place. It might also help you to come to terms with the diagnosis. Talking about your diagnosis means you and your family will be able to use community and medical resources to support you in managing your dementia. Telling people (not just family, friends and neighbours, but community members) will also help to explain any changes and might help to keep you safe in your community (e.g., losing your way) and at home if you are having difficulty completing certain tasks (e.g., cooking). Another benefit of speaking about your diagnosis is that it helps others understand what it is like to live with dementia. This might encourage other people to learn more about dementia and what they can do to help.

The information above was compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia.

Deciding who to tell, or if to tell anyone at all, can be a difficult decision and is a personal one. Some people may want everyone to know, while other people might want to tell only a few people. There are no right or wrong answers. It may be beneficial to tell the people who are closest to you first (your spouse, partner, children, grandchildren, and/or best friend). Tell people who need to know and who you are most comfortable with. Sometimes it is helpful to speak with someone outside of your family; for example, a doctor or a counsellor. They will be able to listen to you and discuss your options with you. Being open to your closest friends, those you trust, can also be helpful.

The information above was compiled with permission from Alzheimer Society of Canada. (2014). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.

Being open and honest about what you are feeling is important for others to understand your experience. Let others know what support you need and how you want to be treated. If you need help, do not be afraid to ask for it. If you need some space, ask your family members to give you the space you want and need.

The information above was compiled with permission from Alzheimer Society of Canada. (2014). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada. 

Your family, friends and neighbours will have to adjust to the news of your diagnosis, and relationships and roles in your family might change. For example, a son or daughter might become more involved in a parent's daily schedule. It is a good idea to talk about these changes openly with family members, friends and neighbours who are supportive.

The information above was compiled with permission from Alzheimer Society of Canada. (2014). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada. 

You might be worried people will react differently toward you once they know you have dementia, and some will. There is more public awareness about dementia now than there was in the past. Many people will be aware of Alzheimer's disease and other related dementias as a result of public education or personal experience. While there will be some people who are not knowledgeable about the disease, many people will be kind and helpful once they know your diagnosis.

There may be those who become over-protective or who do not understand what it is like to live with dementia. Tell people who are being overprotective that you appreciate their concerns and care, but that it does not help to have others taking over tasks and decisions you are still able to be involved with. If you feel comfortable, share your experience with others so they can better understand what you are going through and how to better support you.

The information above was compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia. 

It is okay to have mixed feelings about sharing your diagnosis with others. It can be helpful to let other people you trust know about your diagnosis, but it is also important that you feel comfortable and consider your need for privacy. You may find it helpful to first focus on telling a few supportive people who are close to you about your diagnosis. They can help you through the adjustment and initial stages of the diagnosis.

The information above was compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia.  

If you do not want family and friends to tell others about your diagnosis, you need to communicate that clearly to them. But if they do, it is natural to feel a range of emotions. You may feel upset, or you may feel relieved. Remember your family will also need support in this process and may need to share the diagnosis with others so they can receive the support they need as well.

The information above was compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia. 

It is difficult to predict how others will respond once they hear about your diagnosis. Some people might shy away when they hear the word 'Alzheimer's' or 'dementia'. This happens because of fear and misunderstanding about dementia. Telling people is a good opportunity to share your feelings and experiences so others can have a better understanding, create awareness, and continue to build strong relationships or meet new friends who are supportive of your situation.

The information above was compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia.