Dementia and cancer diagnosis: Has anyone had an experience with this and what are your thoughts about telling or not telling a person they have it?

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Dementia and cancer diagnosis: Has anyone had an experience with this and what are your thoughts about telling or not telling a person they have it?

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My 89 year old mother is in Memory Care and she most likely has metastatic lung cancer. She has moderate dementia. Cancer diagnosis pending biopsy. We would not persue aggressive treatment , We are in favor of keeping her from knowing her diagnosis as she has always been an anxious person and we dont want her last days on earth in mental distress about the cancer. Has anyone had an experience with dementia and cancer and what are your thoughts about telling or not telling a person they have it. I will also get some professional advice but it would be nice to hear personal experiences. Thank you!

Alzheimer's & Dementia Cancer Care Decisions

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Hello again everyone!

Thank you so much for all the thoughts. We have decided to do a PET scan instead of a biopsy as it is much less invasive..but I'm still worried she will freak out even doing that...she is quite suspicious of doctors and fearful of hospitals.. I will tell Mom that it's just to check an inflammation spot they saw on her lungs. I still am going with not telling her if she has cancer. Right now she is happy to get up to eat her breakfast, enjoy her room with big windows, go to PT...be with friends etc.. shes happy

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Treee7777: Thank you for your update.

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My husband (82) has liver cancer and is in moderate stage of Alzheimers. He does know, but when he forgets, I don't remind him. His doctor said his treatments are not working and wants him to go to immunotherapy. From what I've read on Dr. Google, it does not sound promising. (only 15 to 20% chance of working on his type of cancer, and bad side effects. If it does work, only provides months extra, not a cure). Very difficult, but I have decided to talk to the doctor with him because that is what I would want for myself.

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Immunotherapy side effects have me so dizzy with very loud ringing in my ears for 6+ months now. I am so disabled that i cannot function and have fallen 2x so far.Why would you want to expose an elder with AD to ANY possible life extending treatments, nevermind ones that carry such horrible risks? My mother had dementia and I prayed daily for God to come take her. I suggest you bring hospice on to keep your husband comfortable. Good luck.

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I’m in this very situation—dementia and newly-diagnosed cancer— but have no intention of mentioning the cancer. Because the lump is growing and changing and is becoming more painful, he will have surgery this week. I want to save him the mental confusion and anxiety while addressing the physical discomfort. He does repeatedly ask about and draws my attention to the lump. I calmly answer that the doctors aren’t sure why it’s there but they’re going to get rid of it so he’s more comfortable. I don’t mention that he’ll likely have increased pain short-term following the surgery. Nor do I mention or show my own concern about the possible aftereffects of anesthesia. One step at a time.

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Hello! Hope the surgery has gone well! Thank you for responding!

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Don't tell. The drs may say things in front of her, but if/when she remembers and asks just play it down. There is absolutely no reason to create a scare for even a minute with mom. You are correct - don't let her last days on earth be stressful, worrisome, or add other thoughts that will just bounce around in her head.

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Why would you do that? Manage symptoms as they occur and keep your mother as comfortable and content as possible every day.

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I found it better to tell as where the cancer is has been very painful. I’m not sure in this case if dementia, vessels in neck restricted due to tumor or if majority is from so many narcotics for pain.

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If you don't intend to treat her cancer, why go through the biopsy. Better to ask the doctors for whatever helps her to be comfortable until God takes her home.

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IMHO, telling someone they have a terminal disease is only necessary if they would have the gumption to fight it (with every ounce of their courage and energy). If not, let them live out their days in peace and a whole lot of pain meds to make the journey pain free.

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Truly, sometimes I am shocked at the questions people will ask on this forum.

Your mother is 89 year old and lives in a memory care unit. Do you really think telling her she has cancer is really the right thing to do?

I was a caregiver to the elderly for 25 years. I had more than a few people with dementia that had terminal illnesses they didn't know about. No one told them either.

Here's what will happen. Your mother will likely get hysterical then not remember why.
The after affects of this shock will likely be felt for days or even weeks afterwards. It will also cause setbacks in whatever she is still able to do for herself.
Really, all it will achieve is to make the job of the people who take care pf her even harder.

Please, let your conscience decide for you. I'm sure if you look there you will find that not telling her is an act of mercy and compassion.

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Hello BurntCaregiver,
I know in my heart and mind what is the right thing to do , but it has been extremely enlightening and reassuring to hear what others think and would do if they were in my shoes . It's a matter of respect and protection of my mother that I feel compelled to keep the peace in her life as it exists now.

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Let her know that she has cancer. Even if she doesn't remember.

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@CeCe

How can you be so cruel and advise someone to tell an 89 year old with dementia living in a memory care that they have terminal cancer?

I don't say this very often, but really you should be ashamed of yourself that you would tell someone this.

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It would be cruel to tell her. I would NOT do the biopsy. My mom has mild/moderate dementia and I would not tell her if she has any serious health issues. She is 80 and not doing so great. I mean, she's OK, but has a bunch of little issues, besides the dementia, and is generally not terribly happy. So, beyond comfort measures I plan on doing nothing to extend her life. Why extend a life that is just going to get sadder and sadder as the dementia progresses?

Switch your mindset to palliative and/or hospice type of care for the rest of her life. I wouldn't want to know. And I wouldn't want to spend my remaining time being shuttled to the doctor for tests and/or treatments. It's stressful and unnecessary, IMHO.

Best of luck.

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Thank you!

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Treee7777: To undergo the biopsy is going to be difficult.

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Here is a link on what to expect from the various ways to have a lung biopsy:

https://www.webmd.com/lung/lung-biopsy-what-to-expect

Once you read this, you'll see that no lung biopsy is a good idea for an 89 yo, even those that don't require general anesthesia.

And no, no mention of the C word should be made to mom at all.

Best of luck.

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Absolutely not! Dementia is bad enough on its own, but it awards a state of total forgetfulness in most cases. Trying to describe a diagnosis of cancer (sorry to hear that) will only get lost in the shuffle of mental decline, while it might might even add unnecessary stress in some remote corner of the person’s world. Plenty of love and support while this critical added condition resolves one way or the other. In a way not knowing much is a lot better than knowing too much. Either way must be dealt with and take its course. Peace and Best Wishes to all who care!

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I wouldn't tell her of a cancer diagnosis, especially since she may not remember it anyway. I wouldn't tell anyone else, either. I'd make sure that family members were seen, though, in the last days, without blabbing what's going on. Once you start telling people someone has cancer or even anything else, they have advice. For dad, someone said, "They're curing cancer in the Bahamas now, did you know that?" They thought I should take him there. He was 92. Not doing it, and it wasn't true.

Other people chimed in with ridiculous ideas. A friend's family thought she needed to change her diet to organic. The cancer had already eaten up a good bit of her body by that time, and no food was going to help, only chemo, which didn't have a chance of working and didn't.

It's really not necessary to broadcast others' health care info. It's no one else's business and opens you up to a bunch of worthless opinions that do nothing but stir things up at a difficult time.

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I agree. No one needs to know. Keep it simple.

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In simple terms "no". I did not tell my Dad when he had pancreatic cancer. All you are doing is making matters worse for them. Do not put her thru a biopsy either.

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My dad had Stage 3 colon cancer and moderate dementia (at the time). He went through surgery removing 1/3 of his colon. Afterwards he had chemo every other week for 6 months and had to wear a pump for the chemo for 3 days. The first night he had the pump on, he somehow managed to take it off (very scary). This was all during the Covid shutdown so it was a nightmare as he lived in Assisted Living and I wasn't able to go in and check on him. Long story short, he went into remission but the cancer came back - in less than a year. He was Stage 4 and his Oncologist gave him 6 months to live. He was sleeping at the appointment when the doctor told us. All the chemo wrecked havoc on his body. He was diagnosed with heart failure prior to that appointment and I already had him on in-home hospice. I never told him because I knew he wouldn't remember as his Dementia had progressed to severe and I didn't want to upset him over and over. He didn't remember having surgery or chemo either. In addition, any time he would go to the doctor, dentist, etc. he would become even more confused and agitated. He died 5 months later.

I forgot to mention, his regular doctor wanted him to get a pace maker after his heart failure diagnosis which my family and I refused to do. He wouldn't have survived the surgery.

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Senforcement Center of Braxton co WV go door to door asking," if you just tell us, as nurse practitioner, that your mother has just a touch of "Dementia " we can get you- daughter- paid for more hours for your mother". This is wrong. Its a way to make money off elderly. This Dementia diagnosis goes into your chart never to be removed. If you don't have a will, POA or gaurdian set up on this day of diagnosis...you are left as Ward of State and DHHR, APS takes over your life, land health care. APS told me " I say weather your mother lives or dies"

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My father had moderate dementia in a care facility when he was diagnosed with stomach cancer. He was 86 the doctor said his heart would not tolerate the surgery and then chemo he would need. So he agreed with us that he would not be told he passed a few months later because of a broken hip.

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This is one instance where dementia is probably a blessing.

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If you know she has metastatic lung cancer and she's 89 with dementia, why are you doing a biopsy? I assume it's a needle aspiration biopsy but even so, what's the point? Maybe it's time to have palliative care come on board. Doctors will keep going - diagnosing, talking about tests and treatments - unless you tell them to stop on behalf of your mother.

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Please do arrange palliative care/hospice for your loved one.

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I have also chosen not to tell my Mom regarding her demetia/Alzheimers and bone cancer. She wouldn't understand or remember but the times I could tell her she would be very upset. I see no reason to have what time she has in distress. She also has macular degeneration and that is a big distresser for her. She doesn't understand why her vision is failing. She already has enough stress to deal with.

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Bone cancer is terribly painful, mine was excruciating before I got into remission. I hope you have hospice who can help mom deal with the pain. Best of luck

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As you say, confer with her PCP or other specialist and, perhaps the staff where she resides. Then, do what you feel is best for both your mother and yourself . Some considerations you may want to ask yourself may include:
1. If I tell her, will she comprehend and remember? Depending on the stage of her dementia she most likely will not.
2. Will it create more anxiety for her and myself when she doesn't remember and or asks same things over and over ?
3. What will give her the best "quality of life" in the time left ? What defined " quality of life for her" when she was well ? How can " quality of life " be best provided for her now?
4. If you decide not to tell her, will you be at peace with yourself?

5. Also if you decide not to tell her, will ALL of the family and STAFF honor your decision and not try to go behind your back and tell her?

6. Hospice should be a good support for both her and you / family going forward which ever way you decide about telling her about the cancer.
Be sure that you access their chaplain and social worker team members for ongoing support with you and the family as well as of course your mother. Be sure all of the hospice team will honor your decision.

Practice good self care!

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Thank you for your advice!

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My mum has incurable cancer and dementia, I haven't told her because she would focus on it as she gets obsessed with things

The doctors wanted me to tell her but I can't see any good reasons to, I want to help my mum have as much quality of life that she can. Who would gain anything from telling her

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I find it interesting that 'the doctors' wanted you to tell your mum. Gosh, how many docs said this? There's no medical reason; their specialty, and what we want them to be is to be a medical practitioner; they're not there to give such advice--you might as well survey a dozen people on the street on their opinion--doctors are not all-knowing of everything, especially not emotional and spiritual aspects of being human (unless they're Psychiatrists, or are palliative-care docs. This is my own opinion, and I offer it humbly.

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My daddy had ALZ. I did not tell him. He knew that he was forgetting things but I was afraid if he knew then it would upset him. My friend told her mom that she had ALZ and her mom went into immediate depression - stopped crocheting, crafting, going to the salon, church - just sat in her chair petting her cat until the day she died.
I agree with others statements - if she is an anxious person telling her is not going to help her. Blessings to you and yours

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No! Why?????
Why would you tell her something that will be highly upsetting. Then she will forget, and you would have to tell her over and over again?

What's the point of her knowing this information?

Just keep her happy in her last days. Play her favorite music. Give her cute little gifts and items that she might enjoy. Do her nails and make-up. Give her JOY in her last days.

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If you are not going to put her through the struggle and pain of surgeries and chemo, I would not tell her. If it were my mom, I wouldn't even do the biopsy. What would be the point? Does hospice require it?

You say she is an anxious person...no need light that fire by telling her something she can't really process or do anything about. Hospice can make her comfortable as things progress.

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Hospice can come Into the facility . I would want to Know so you Know what you are dealing with But if the Biopsy Is a Invasive Procedure I would fore go anything to do with Anesthesia . Sometimes they can do a Blood test to see if you have cancer or a X Ray / MRI . I know the dermatologist Just stuck a Knitting Needle near My eye it Hurt But that was for brain cancer . My Brother had schizophrenia and they took him off all His medicine - he went thru chemo and had a chance of surviving with Immunotherapy But he did Not want a IV and His schizophrenia was going Mostly untreated . In the end he did Not Know he was dying and he chose to smoke again . The social worker was great and I Made the decision that My brother would make his choices In the Last Months of His Life . What would your Mother want ? What would be her choices ? I Got hospice into the rehab and when the tumors and spasms got Large and I consulted with the head doctor and head Psychiatrist of Dana Faber everyone agreed it was time for Hospice and then Morphine .

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A lung biopsy is an invasive procedure and requires a general anesthetic.

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Does she need the diagnosis to get hospice care? That may be a reason to get the biopsy. I would think you might be able to get hospice without the cancer diagnosis though.

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The Alzheimer’s alone may be enough to qualify her for hospice. Knowing for sure that lesion is lung cancer not sure is necessary as family has opted to for comfort measures only, hopefully they had this discussion with parent prior to Alzheimer’s diagnosis.

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It depends a lot on the person. My mother cannot remember anything recent and we used to agonize over telling her my older brother died. We took her to the funeral and used to tell her when she asked but it was hard for her and us every time we did it. Eventually we decided not to tell her anymore and she stopped asking about him.

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Dementia and cancer diagnosis: Has anyone had an experience with this and what are your thoughts about telling or not telling a person they have it?

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