Should You Share a Dementia Diagnosis? What You Need to Know!

Should you share a dementia diagnosis? Discover the crucial facts you must know! In this video, I dive deep into the sensitive topic of disclosing a dementia diagnosis. This decision is deeply personal, with no one-size-fits-all answer. ✨ We’ll explore the pros and cons to help you or your loved one make an informed choice. From gaining emotional support and reducing stigma to facing potential privacy concerns, we cover it all. 📖 Plus, hear real-life stories from our Care Collective members who have navigated this challenging decision.

💬 We'd love to hear your thoughts and experiences! Have you or a loved one faced the decision to share a dementia diagnosis? What factors influenced your decision? Share your story in the comments below.

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📜 DISCLAIMER: The content of this video - or any content by Dementia Careblazers - does not replace the need for healthcare professionals. Our content is not healthcare advice and is not a substitute for your own healthcare. It is for general education only. Do not use this content to self-diagnose or self-treat any health, medical, or physical condition. By consuming content from Dementia Careblazers, you agree to hold harmless and indemnify Dementia Careblazers LLC for any and all losses, injuries, or damages resulting from any and all claims that arise from your use or misuse of this content. All content or recommendations on the company’s website, social media, blog, or email series. All comments from Dementia Careblazers’ are expressions of opinion only.
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👩‍🔬 I'm Dr. Natali Edmonds, a board-certified geropsychologist. (A clinical psychologist who specializes in working with older adults.) One day, while hiking a trail, I came up with the idea for Careblazers and I decided to see if posting videos online could provide help to the many other Careblazers in the world who don’t get to have help come directly to them in their homes. I hope that this work helps you in some way on your caregiving journey.
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It’s our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia friendly world, we must first create a caregiver friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information.

#careblazer #dementia #dementiacare
00:00 Introduction
01:08 Pros
04:08 Cons
06:43 Tips for sharing diagnosis

[DementiaCareblazers]

Explore our Care Collective for personalized support, live Q&As with dementia experts, and a supportive caregiver community:

[marybethingberg]

I am a pastor of an amazing, mature, congregation. I shared at church and my usual cool, collected self choked up. I've been a pastor for over 35 years: the support from 'my people' was amazing: "we are with you, let us know if/when you need anything" and then ~ we have all moved on into the normal life of a congregation. They don't pry, they treat my spouse like anyone else: with kindness. A couple of folks volunteered to be on my "team" whenever I/we need. I am truly grateful.

[KenIvywood]

I have always shared because it was important for others to know why we are doing things differently. And I believe it allowed others to be more understanding.

[sandylummus]

I told my church friends ablout my Loved One dementia and his denial of it. They responded wonderfully. They do not ask him personal questions and accept his speaking out how he is doing. He tells his symptoms but not the diagnosis. I have received many offers of help when i decide i want it. Only caveat is he does not know they know and i feel some guilt but believe i would do it again for me and him. Thank you Dr Natali ❤

[debrasumner]

My partner was diagnosed with Dementia, Alzheimer’s type, 3 years ago. He was in denial and wanted no one to know. I respected that for a little while. He finally told his son and some friends. As we went Out to events, I told friends with us and told them that they could pass the word along. That gave me a better feeling of safety at parties or picnics when others could help keep him safe and not make judgements as they now knew his diagnosis.
As our group is now in our 70s and 80s, there are more of us dealing with partners with Dementia and more aware of our own unknown self future possibilities of receiving this diagnosis. I have found our social world getting smaller with what I believed were close friends but my world is getting larger with those who I only ever considered acquaintances.

His safety was my main reason for sharing his diagnosis.

[fanniemoorer]

The problem that I have is that my husband don’t want to do anything. I am finding it hard to motivate him. I love this group

[pw]

We decided to share my LOWD'S diagnosis.
There are advantages 're legal and healthcare.
The real surprise is those who showed understanding, often those you'd wouldn't have expected to.
The downside was the loss of some long term friends and family unable to go cope with the diagnosis. Even though we weren't asking for anything.
Disappointed with that initially but found solace with the knowledge that we weren't wasting our time with them.

[donnaallgaier-lamberti]

My 79-year-old husband was diagnosed earlier this year. I DID share copies of his diagnosis letter with every one of his physicians, dentist, financial planner, bank, etc. I did this for several reasons 1) I wanted them to be aware for his increasing medical needs and to inform them that I now have BOTH his financial and medical power of attorney. (He is already on Medicare and Social Security so applying for disability is not an issue.) 2) I also mailed his diagnosis letter to his adult kids in another state who simply have not (in the past) believed that he had any memory issues at all. 3) He has been making many serious financial mistakes the past 6-8 years and I needed to take over ALL the financial decisions and banking. I am hoping that this will open him up to more senior services in our county as time goes on.

[andydogdixon]

I’ve been Diagnosed with early onset dementia. I’m 66 years old.
I think of a wonderful old song I love so much.
“ if that’s all, there is my friend, then let’s keep dancing, let’s break out the booze and have a party. If that’s all there is…”

[yoyosmum]

I'm the person with mild dementia, my PCP referred me for testing right away to a neuropsychologist for testing. Came back mild dementia. I have mobility issues so don't want to go out very much. But I'm the family member that does all the "business" like banking, making appointments, figuring out problems. My DH is very supportive but won't try certain things. I'll just have to see how it goes till I can't anymore.

[buelan.]

Your video’s are so helpful. Thank you for what you do. So many of us are at a loss about this topic.

[allysonschrier]

Thank you so much for sharing about this very important topic! I wrote an email that I shared with everyone on both mine and my husbands email accounts sharing about his diagnosis, and asking for specific kinds of help. I was deeply touched by the help we received, mostly from people I would have considered outliers--people who I would previously have considered acquaintances, not friends. There were others in my caregiver support group who resisted sharing at the request of the person with the diagnosis, and as a result they received very little support which made life harder for both the person with dementia and the person caring for them.

[madeleinefraley]

You answered my question from 6 or 8 weeks ago beautifully. Thank you so much for your logical response and the reminder that every situation is unique. Bless you for your dedication to all the caregivers out here.

[stevenblack]

I believe in sharing helps with awareness and the progress of the disease and people are more willing to help you and support you 😊❤

[brianwood]

It is often awkward being somewhere with my partner when some people know about her diagnosis and others don't. As time goes on and more people know, I get sympathy and some offers of help. What I wish her old friends would instinctively do is visit with her, go for a walk with her, take her on an outing. That would help us both, but her friends have retreated somewhat. Overall, I find that sharing her diagnosis is necessary to help people understand what is going on. It was awkward deciding what and when to share early on, partly because I was in some denial myself. And I had to get over the feeling of being disloyal to her, because I've mostly told people when she wasn't present.

[lindagraham]

i want to see dementia not treated as a negative stigma and people become more aware and compassionate about those with dementia.

[janejohnson]

Another pro - sharing the diagnosis when appropriate helps me (as a caregiver) accept the reality of my spouse’s dementia and prepare myself for the impending losses over the next phase of our lives.

[KristinaHoneyHavenFarm]

My mom's diagnosis came after some other health issues, so we had been keeping her siblings in the loop. She chose to have me share the diagnosis with them and with my siblings, rather than choosing to tell them herself. I have not told anyone else who knows her, although I think she has told a few people she has run into in the store. (I try to give her privacy for her conversations.) She had just moved prior to diagnosis; all I told the neighbors was that she sometimes forgets things (pre-diagnosis). It's an HOA so I figured them knowing that might help things go more smoothly. I don't know whether it has or not.

[rhonaclark]

As my husband wanders it was necessary to let people know the diagnosis. They watch out for my husband when they see him alone or with our dog. This helps me.

[sunnysidenewsict]

When my mother was diagnosed she didn’t want to believe it. As someone with a masters degree she felt it degraded her and she often says, I’m not stupid. We tiptoed around it for several years and never talked about it or used the words dementia or Alzheimer’s. I think we hurt her in doing this as it seems to have hindered her knowledge of the diagnosis or any desire to learn more about what we can do to try and slow it down, like diet and exercise and she has just faded into someone who sits on the couch and plays solitaire 12-16 hours a day.