There is no single ‘right’ or ‘best’ way to share a dementia diagnosis. What matters most is that the conversation helps the people around you understand the changes they may have noticed and reduces confusion or misunderstandings. Sharing can also make it easier for you to ask for, and receive, support.
How to share the diagnosis
Sharing the diagnosis can create some tricky issues to navigate. It will be different for everyone. The following are some ideas on how to share the diagnosis:
- For the person with dementia: It is your diagnosis, so you decide who to tell, when, and how.
- Heinrich asked his oldest son to be the family spokesperson.
- Ron told his golf club committee. He proposed, and then, with the committee, organised a fundraising dinner for dementia research. A guest speaker explained the condition and gave tips on how to give effective support.
- For carers or supporters: Encourage and support the person to share in their own way. If they prefer that you help deliver the news, agree together on what will be said.
- Planning what you are going to say beforehand is helpful. Write down the key points you’d like to share.
- In other parts of this website we’ve talked about the different sorts of reactions people have and these can be difficult to predict. Be prepared to address preconceptions and stereotypes about dementia, as well as questions. You can direct people to this website, give them a printout from this website, or Dementia Australia’s website that tells them more about dementia.
- Be prepared to talk about how you want or don’t want to the treated.
Mario told his group of mates before their annual fishing trip “I’ve been diagnosed with Alzheimer’s. I’m fine to head out on the trip, but I have decided to give up my driver’s licence, just to be on the safe side. I’d really appreciate it if I can be a passenger this year.”
- Many people chose to tell people face to face, or by telephone. Some people chose to share the news in letters or by email. One person told us she announced her diagnosis through her annual Christmas letter.
- Choose the setting. A familiar, calm environment, such as your living room or a favourite café, can help you feel more comfortable.
Ismena felt most comfortable inviting friends over and telling them in her own home.
Sharing with children
- Use clear, age-appropriate language. For example, “Dad’s brain is sick, so sometimes he forgets things or gets upset. You can’t catch it, and we’re still the same family.”
- Invite questions and repeat explanations as needed.
- Age-appropriate books are also available; see section 1.10 Plan to get support for children.
- Reassure children that their feelings (sadness, anger, worry, etc.) are normal and that support is available for them too.
When to share the diagnosis
There is no right time to share a diagnosis. Some people tell everyone straightaway, others wait or share the news gradually. Many people start by telling the people they feel closest to. This usually includes immediate family and close friends, those who can support you emotionally and practically. Later you may want to share the diagnosis with casual friends or acquaintances.
Sharing feelings
If you feel comfortable, you may want to share your feelings about the diagnosis with others. Be aware that feelings can change rapidly. Some days you may feel impatient, ambivalent or frustrated, other days might be ‘good’ days.
Kim talked about how it was generally external problems, not her husband’s dementia that made her feel particularly ‘down’. “I find I can cope well, most of the time except when I come across barriers in getting services or constantly changing community care staff. I feel I have to be careful if I complain or am short tempered with friends and explain its not Ken! I don’t want them thinking badly of him.”
Be prepared that when you share the diagnosis other may want to express their feelings, verbally, or may do so in their actions.
- Wendy told us that when she told their oldest friends, they reacted with disbelief and felt Wendy was overreacting. After, they became distant. Wendy said, “It was like dementia was contagious”.
- Ken and Liz talked to the neighbours about Liz’s diagnosis. The neighbours said that they were shocked because Liz was ‘so young’. They had a printed handout about young onset dementia that they gave them. The next day the neighbours called around to offer their support.
- Rob and Sam decided to tell their closest friends over dinner. Rob was not only diagnosed with young-onset Alzheimers, he was carer of Sam who had advanced cancer. Dinner was very emotional, with expressions of shock, grief and concern. Rob had prepared notes of what to say and asked for their friend’s practical support. The energy put in to expressing feelings was redirected into planning how Rob and Sam could best be supported.
Help to share the diagnosis
The Circle of Friends Worksheet can help you to think through decide who you are going to share the diagnosis and plan what you’re going to say.
Read Section 2.7 for common reactions to the diagnosis to prepare for sharing the diagnosis.
Contact Relationships Australia if you need assistance with preventing or resolving family conflict, having difficult conversations, or planning for the future (including medical, health, financial and living arrangements).
