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

[@DementiaCareblazers]

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[@stevenblack3092]

@@DementiaCareblazers I have followed you through my loved ones journey through dementia and sadly we are coming to the end of the journey she is going only 67 and as I’m told that the rate of decline is more severe the younger the onset I appreciate all you have done for us and I continue to recommend your videos to my care groups I’m lucky to have great support here in Australia and even know the access is difficult once you get in the support is great thanks again for all your help over our journey you really are a beautiful person thank you Dr Nat

[@marybethingberg2802]

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.

[@DementiaCareblazers]

So glad to hear this. Thank you for sharing 💖

[@user-yw9vm9gv9e]

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.

[@donnaallgaier-lamberti3933]

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.

[@yolas123]

THANKS FOR SHARING YOUR JOURNEY WITH THIS DISABILITY. I CARE FOR MOM, WHO WAS DIAGNOSED WITH THIS. YOU MENTIONED APPLYING FOR DISABILITY WON'T BE A PROBLEM? AND THAT YOUR HUSBAND ALREADY HAS SOCIAL SECURITY. SO IS THE DISABILITY CONSIDERED TO BE SEPARATE? I AM WONDERING IF THIS IS SOMETHING I CAN DO FOR MY MOM, PLEASE LET ME KNOW THANK YOU TAKE CARE CARE BLAZER

[@andydogdixon1]

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…”

[@pw601]

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.

[@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.

[@debrasumner5186]

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.

[@sandylummus3553]

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 ❤

[@buelan.6525]

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

[@fanniemoorer318]

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

[@L.C.Griffith]

My husband was diagnosed with Alzheimer’s last week. He asked me to record his journey on KZbin. I’m not ready.

[@annpettay2613]

It will be hard, but think of all the people your documentation of his journey may help. Sending prayers your way.

[@washingtonroad6738]

❤

[@allysonschrier9065]

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.

[@madeleinefraley8916]

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.

[@brianwood1285]

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.

[@haydenhilton]

It’s so sad that her friends are treating her differently, I’m so sorry to hear that. You’re not being disloyal to her, you’re protecting her feelings and doing what’s best for her in these difficult circumstances. I’ll keep both of you in my prayers.

[@sunnysidenewsict8553]

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.

[@rhonaclark4745]

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.

[@lindagraham8884]

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

[@stevenblack3092]

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

[@annduncan7436]

I am partime roommate for my MIL with dementia. I've been very disappointed with the medical community and their lack of knowledge and communication with me. Her information is not reliable.

[@SusieQ-nd3dy]

What about telling your loved one themselves that they have dementia? Mom had several strokes 30+ years ago, so was already somewhat deficient as far as understanding things too "deep" or complicated, but still had some comprehension or awareness of her surroundings. Now I don't even know what she can understand anymore. Would it be cruel? Would she even know what it was? So far I haven't talked about it with her.

[@janejohnson632]

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.

[@HealingHeartIssues]

I can relate to this.

[@jacquelyncollier3904]

Great advice

[@kimberlyyoung6517]

My mom didn't want to hear that she had dementia so she didn't tell anyone but me and my brother did tell the family

[@lpetras-fl9yr]

I shared and everyone stopped talking to me... Wish I had just kept it to myself.

[@annpettay2613]

I'm so sorry. When my husband was diagnosed with cancer we lost so many what we thought were good friends.

[@DementiaCareblazers]

So sorry to hear this. Sending you love 💖

[@haydenhilton]

I’m so sorry to hear that. Those people didn’t deserve you. I’m only 25 but I’d be your friend. People just don’t understand that their health can change at any time.

[@user-zg2vs5rp8h]

My partner is in denial. Very negative with me. I have shared with his kids they don’t care! I have shared with my kids they were amazing. I am along and have no support. I am going under. Surely there has to be help and support

[@onemoregarden]

I do not have a chapter of the Alzheimer's Association in my small town, but I hear that they are VERY helpful. I hope that you have one in your town. Prayers are going out for you and your partner.

[@julieannemacdonald1698]

This has been very helpful. Thank you for all of your videos. This is the first time I'm dealing with someone with dementia and all resources have helped me along this path.

[@suzannewhitaker3507]

It won't be very long until they will know without telling them.

[@mikeporterfi]

Thank you very much for this video.

[@DementiaCareblazers]

Glad it was helpful! 💖

[@catbee1452]

Support would be wonderful but I have found that most family and friends make light of it and fail to be supportive. I even had a friend say that I was wrong for bringing my husband to a neurologist to be evaluated because I was probably just trying to 'get rid' of him. I have not seen a natural outpouring of support....at all.

[@mahomedfaroukpatel630]

I shared it with my family and friends

[@L.J.H.-sg6eb]

I have to tell the doctors every time we have to go to the ER or urgent care. They always try to ask my Mom questions and at the stage of Lewy Body Dementia she is in, she gets sad. Also, I have a QUESTION. What Tage of Lewy Body is uncontrolled Body temperature? One moment she is very wsr and then about 5 minutes later she is shivering.

[@michaelamann3060]

Thank you for this video it came at just the right moment. 💕

[@elenanic8353]

My mom only knows she became very forgetful. If you say to a person she has dementia - you' ll hurt her very much because this diagnosis is considered almost identical with being crazy and belonging to a mental institute... Anyway, several minutes after telling them, they might forget entirely....so why even bother...

[@paulabanta586]

Thank you!

[@jackyhorn6709]

Great video. Spot on.

[@DementiaCareblazers]

Glad you enjoyed it 💖

[@kalijanicas952]

my mom has anosognosia, how do i deal with that? She thinks there is nothing wrong with her. TY

[@kathrynr5026]

And my husband refuses to be evaluated even though he has some awareness of his memory/reasoning deficiencies. Others are noticing his issues. He thinks he's 29 instead of 89 and wants to do things and "take care of me" like he has always done. Yet he can't figure out what day it is even with an enhanced calendar to help. He would be so angry if we shared outside of his daughters.

[@judyfeldman1315]

But my husband is embarrassed and forbids me to share. What to do?

[@allysonschrier9065]

Hi Judy. This is such a tough call. You want to respect his wishes, but at the same time, you need support. And it gets really hard to negotiate situations where it is obvious to those you are with that *something* is wrong, but they don't know what, which leads to speculation. The way I handled it is that I spoke to my husband about how amazing we were because even with dementia in our lives we were AWESOME, and that it was our job to show the world that dementia is something that people LIVE with. By sharing our diagnosis we would be helping others with a diagnosis, and we would be helping the world understand that people with dementia are first and foremost PEOPLE. I really do think that we as caregivers need to do our best to dispel stigma, which is made worse when we try to hide the diagnosis.

[@judyfeldman1315]

@@allysonschrier9065 Brilliant. Thank you.

[@patriciabecker-spellman]

The flip side of receiving empathy and support is hearing absolutely little to nothing in return of my announcement. Consider how this might affect you, should you have family members who historically haven't been very generous with their love or consideration. It is a painful realization that I am actually happy to have discovered early in my own caregiver's journey with Alzheimer's Disease. Though deeply disappointing, it does make it clearer to me to know who I will continue to share our struggles with.

[@robertar.5189]

Unfortunately, by disclosing my mom's diagnosis, did not help - except for one person who lost her father to Alzheimer years earlier, and therefore did not complaint about my mum's sometimes peculiar behaviour.

[@DementiaCareblazers]

So sorry to hear this. Sending love 💖

[@markaprill6501]

I tried to tell them about their significant mental decline and they cut me out of their will…..obviously the will not my concern but this shows they didn’t exactly take it well.

[@bevdeptula289]

What about someone who doesn’t think there is anything wrong with them but there clearly is.

[@DementiaCareblazers]

Hi there, Thanks for your question. Here is a video you may find helpful: kzbin.info/www/bejne/iXvImH-bdpmMiqc

[@buunzz]

It drives me nuts that my MIL's adult children always are tip toeing around it and won't just say it. It's like they can't accept it. Their mom is an extremely intelligent woman who is a biology major. I KNOW she can handle it with the correct tact. She already lost her license, and they have her affairs taken care of legally and medically but keep the diagnosis hush hush. My MIL will often say "I have holes in my brain" which is as close to saying it as we can get.

[@karenb4233]

What do you think of the new blood test for early alzheimers?

[@DementiaCareblazers]

Hi there, Thanks for your question. Here are a couple of videos I did on this: kzbin.info/www/bejne/pIm9dHSYd9Kao7c kzbin.info/www/bejne/pmHFf4eFi51lfKM

[@karenb4233]

@@DementiaCareblazers Thank you for answering me! I have seen where there have been studies done involving Nicotine being able to reverse Alzheimers. Do you have any insight or information on this?

[@rhonaclark4745]

People can understand when the person with alzheimer doesn’t speak to them or remember their name.

[@desliehandy2654]

DH319

[@annpettay2613]

??