Should you tell people your loved one has dementia? And if you’re the one living with dementia, should you tell people you have it?
Careblazer, this is a personal decision. There’s no one size fits all approach. But I can share some of the pros and some of the cons of sharing a dementia diagnosis, so you can make an informed choice that feels best for you and your loved one.
Every Situation Is Different
Every single situation is unique. How severe the dementia is, the relationships in your life, and individual preferences all play a role in whether you decide to share the diagnosis.
Pros of Sharing a Dementia Diagnosis
1. Support
When you let other people know your loved one has dementia, or that you have dementia, you open the door to some much needed emotional and practical support.
2. Understanding
Sharing the diagnosis can help other people understand and make sense of changes they may have already noticed.
3. Planning
It can pave the way for the legal and financial arrangements that need to be made after a diagnosis. If you’re the person who has been diagnosed, for example, sharing it with your partner helps make sure future care and legal arrangements are being set now.
4. Reducing Stigma
This is a big one. Sharing the diagnosis can help educate others and reduce the stigma around what people think when they hear the word dementia.
There are so many misunderstandings, misconceptions and myths about dementia. Part of the reason is that when the general public sees examples of people with dementia, it tends to be people in the moderate or severe stages. Someone having so many problems and so much confusion that they can’t really do much for themselves.
But the early stages of dementia aren’t like that. People are still very much working and living productive lives. It’s not like someone gets a diagnosis and immediately can’t do things.
5. Access to Resources
Sharing can open the door to support groups and community agencies that can help.
If you’re not sure where to start, I walk through four places in where to get help after a dementia diagnosis.
6. Maintaining Relationships
It can help maintain relationships and strengthen the bonds between family members and friends.
I had a Care Collective member who didn’t want to share her husband’s dementia diagnosis with other family members. When she finally decided to share it, she wrote to me and said, “What I thought was going to be the thing that hurt our relationships was actually the thing that strengthened our relationships.”
By sharing her experience and what her husband was going through, the family came together in a way she could never have imagined.
7. Safety
Dementia progresses. When people around you know about the diagnosis, they can stay more alert for when more help is needed with things like driving, living independently and managing finances. That helps avoid potential harm and risks, including becoming a victim of scams.
Cons of Sharing a Dementia Diagnosis
1. Stigma
Unfortunately, stigma is also a con. People think and imagine lots of things when they hear the word dementia. Some people are absolutely going to treat you or your loved one differently once they find out.
2. Loss of Independence
Some people will start to step in and take over tasks that the person with dementia is still very much capable of doing.
3. Employment Concerns
This is a really big one. Many people diagnosed in the early stages are still working. Sharing a dementia diagnosis while you’re still working could lead to discrimination: being passed up for projects or promotions, or even getting pushed out of your job.
4. Emotional Burden
It can be emotionally heavy to share such a private, deep, hard diagnosis with other people. Especially when you’re doing it over and over, which is what most people do in the beginning as they tell all the different people in their life.
5. Privacy
When you share a diagnosis, you’re not keeping that personal health information private. For some people, that’s really important.
6. Denial
Sometimes a person just isn’t ready to accept the diagnosis. If you’re the caregiver sharing it with others, it can be really hard for your loved one to agree with you, or to be ready to have that information shared.
And it might not be denial. It might be a condition called anosognosia, where the person doesn’t understand that they have the diagnosis, even though they’ve been told. They just don’t believe anything is wrong with them. In those situations, it can be tricky to share your loved one’s diagnosis with other people when your loved one doesn’t even agree they have it.
Whether to remind your loved one of the diagnosis is its own question, and I answer it in should you remind someone they have dementia?
7. Relationships
Your relationships will change, or become strained in some way, at least with some people. Other people become uncomfortable, uncertain and unsure about what to do, what to say and how to interact once they find out.
If someone you’ve told doesn’t believe it, I go through why that happens in when family doesn’t believe your loved one has dementia.
How to Share a Dementia Diagnosis
If you do decide to share, here are some tips to consider.
- Start with close, trusted family members and friends.
- Be clear about what you need from others, or what you’re looking for when you share it.
- Share information that helps educate them about dementia and clears up some of the misconceptions and myths floating around out there.
- Think about the right place and time to share something this important. Make sure you have time, in a quiet area. The other person might have questions or reactions you’ll want to respond to.
- Consider having a trusted support person with you when you share it.
When Not to Share a Dementia Diagnosis
There are times you may want to consider not sharing.
- If you’re not ready. Emotionally, mentally, maybe you’re just not in a place where you want to share with others, and that’s okay.
- If sharing it could jeopardize your own safety or well-being.
- With people who would not be supportive. You don’t have to share it with them.
We get to decide how much we share. And just because we share some information with some people, it doesn’t mean we have to share it with all people.
You Can Change Your Mind About Who to Tell
Our decision about who to tell, and how much to share, can change with the circumstances. It’s okay if one day you decide one thing and another day you decide something else.
I once worked with a Careblazer whose husband had dementia. In the beginning, they had talked, and he did not want other people to know. She wanted to respect his wishes, so for a long time they didn’t tell anybody.
But as he declined and needed more and more help, she needed more and more help too. And it was really hard to find ways to get that help without letting other people know what was happening. Not to mention, many of the people who interacted with her husband were starting to notice that things were off.
So even though she did her absolute best to respect her husband’s privacy in the beginning, she decided it was time to let some trusted people in. By doing that, she opened the door to more support for herself. That helped her, and it also helped her husband.
Whenever we make a caregiving decision, there are two people to consider: the person with dementia, and you. This is one of those situations where you can consider yourself as well.
The Decision Is Yours to Make
Careblazer, deciding whether to share a diagnosis is deeply personal. There’s no right or wrong approach, and people make different decisions. It’s about what’s best for your loved one and you, together.
And if you do decide to share, you’re in control of who you share it with and how much you share. You don’t have to share everything.
Decisions like this one are easier to think through with people who understand what’s at stake. Inside the Care Collective, we talk through them every week, in the support rooms and in Q&As with me, so you have help working out what’s right for your family. You can learn more here.
