What to do when a person denies their own dementia diagnosis?

I found the stage of fear, paranoia and conspiracies to be the most difficult. I was shocked at the strange ideas my mother’s brain conceived and expanded upon. Such deep mental rabbit holes! Still competent to put up a fight, but likely to go against their own best interests.

Normally I’d ask something like “If you think Dad is conspiring against you, who would you trust to help you?” or “Dad loves you. Why would you doubt he wants what is best for you?” But with dementia, logic flies out the window.

Could she convinced that he and the doctor are helping her post-stroke? (stop referring to dementia) Some “brand new treatment” to try. “What should Dad be doing differently to help with your recovery?” (to give her a sense of control)

I tried to divert and redirect constantly. And validate her feelings without giving in. Sorry you’re dealing with this rotten, frustrating, combative stage.

Likely will come to guardianship or conservatorship for her own protection eventually.

You won't be able to correct or convince her. Limit talking to her, but when you do take her calls, redirect the conversation to something totally unrelated or upbeat, even if she keeps trying to return to her paranoid discussion...it is unproductive and stress-inducing for you. With my Mom I will often pretend I'm getting another call or I walk away.

What your Mom has is anosognosia, where someone is unaware of their own cognitive condition or that they can't perceive their condition accurately.

I don’t know what the best way is to deal with any of this.

I am facing the same issue with my brother right now. He has been diagnosed with Alzheimer’s disease. He’s only 60.

I am concerned about him living alone, especially since he lives several states away from me.

He knows what his diagnosis is but he seems to be in complete denial at times.

I am somewhat relieved that he did appoint a good friend to be his medical PoA. Plus, he did look into assisted living and memory care facilities in his area.

Just as soon as I start to feel better, and feel like he is starting to accept his diagnosis, he will say something like, “How did this happen to me? I just have to focus more so I won’t forget things.”

I wish you well and hope that you can find peace during this difficult time.

Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your mother.

Watch a few Teepa Snow videos on YouTube as well. She is a good teacher on the topic of dementia.

My mother had vascular dementia for 6 years, most likely what your mother has, caused by strokes. She too had anosognosia where she was fine.....all the OTHER folks in her Memory Care Assisted Living facility were "stupid" or "crazy". Ativan is a great calming medication for agitation with dementia, and so are anti depressants. Speak to moms doctor or ask dad to do so. Vascular dementia has about a 5 year life expectancy to it.

Just let moms calls go to voice mail if they become too frequent, and limit your conversations with her. Remind her that dad loves her and ask her what shows she's been watching on tv?

Keep reading this forum for advice on how to deal with all of this. It's a lot. But we all help one another around hers and it makes life just a TINY bit easier.

Hugs.

Yes, My sister has had Dementia after having TBI since she was 20 yrs old. The Dementia started at 65 yrs old now she is 73 & pretty much lost ALL her Short-term Term Memory. And she just can't think for herself anymore. She has paranoia about thinking people can see her in her bedroom window. But will answer the door if I do NOT hear someone knocking in her Bathrobe. She lives in a negative world, always saying to herself, I am bored or there is no food in the house or talking to herself and & the cats. She can't even make a bed anymore & dress herself in the right Season. Correcting a Dementia person is NOT good, they will NOT remember the next minute like my sister so its not worth the Battle. I live with her & she is younger then me & her Autistic Son who is another whole story. I am both their SS rep (manage their money & pay their bills) and attend to their lives & live with them so we do NOT have to put them in a Home. IT IS a 24/7 job !!

Like you, I found my mom’s Alzheimer’s-driven paranoia and conspiracy theories very unsettling. She’d accuse me of going through her purse, which had all of $5 and a lipstick in it, (which I put there). She’d accuse “people” of stealing her dental bridge, which I found, in her mouth. These accusations went on and on. After she said how good the (decaf) coffee was at a restaurant, she said it had been poisoned. I tried to reason with her, that I wouldn’t drink coffee that was poisoned, and I had the same coffee that she did, but I learned that reasoning with a person who had an Alzheimer’s-ridden brain is futile. When she’d make accusations, I reminded myself to blame the disease, and not her. Before my mom got Alzheimer’s, the only thing I knew about the disease, was that people afflicted with it had memory issues. I thought, how bad could that be? I’d just remind her that I was her daughter. I had no idea of the paranoia, cognition issues, etc. Now, I could write a book. Speaking of which, I did, chronicling the 5 years that hubby and I took care of her called, “My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale.” I thought of the title when I realized that my once broad life, was reduced to the oppressing health concerns of my mom and dog. Prior to learning about Alzheimer’s, I thought that if people just tried hard enough, they could overcome the brain deterioration that comes with it, like memory issues and acting inappropriately, but that’s akin (from my mom’s “kin”), to saying that if you just wished cancer to go away, it would. Just take it one day at a time.

So sorry you are dealing with this, it is a journey. A journey your LO, you and your dad (other family/friends too) never wanted/intended to take.

It is so hard to wrap one's head around dementia (regardless of type) as the person before you is NOT the same person as before. And as others have said, there is NO amount of reasoning, explaining, logic, pleading WHATEVER that can get them to see or understand what you see. It is pointless to try and heartbreaking all the same as we all want to help our LO accept and deal with this, but often they cannot. It is like asking a blind man to see; it is just not realistic or possible.

The letting go of this need to explain, to reason w/them, and to get them to accept/understand "the situation" is a maddening stage for those of us stuck in this stage. It is a stage in our own acceptance of this horrible journey of dementia.

The advice about limiting calls (let them go to voice mail and you call back if/when you choose to do so) is a hard one but well worth setting your own boundaries of what you are able to handle/take. The calls are not helping your LO and likely causing you stress, anxiety, grief....

Limit the time of the calls to maybe 10 mins max OR to when the conversation turns negative. I used to set a timer w/my mom, and would say at the 8 min mark something like, "oh there is a deliveryman at the door, got to go." It really did not matter if I used the same "off ramp excuse each time, she did not remember." Or if she was in an awful mood at the outset, I would say something such as, "sounds like you are having a bad day, I am sorry about that, but I'll have to call you back later, perhaps we can chat when you are feeling better." And I would wait a full week before calling back or taking a call from her.

I ended up limiting the calls to once every 2 weeks and for only about 10 mins max. It was ALWAYS the same auto tape, "I am fine." "I need to go home." "I do not belong here." (she was in a nursing home, permanent placement), "You need to do what I tell you to do." (she wanted me to take her into my home and do the 24/7 care solo on my own, not feasible.) "I am going to get pills and kill myself." "The food here is terrible." "They do nothing here for me, I take care of myself. (She was bed bound, used a wheelchair, they had to take her to the shower room to be showered 2 time a week, but in her mind she was totally fine and could take care of herself.) I was the evil daughter who "put her in a nursing home" and "I took her money" (actually she was spent down so Medicaid could pick up the nursing home bill.).

It was the Twilight Zone any time we spoke. So after a year of this insanity, I reduced calling and visiting more and more until I went no direct contact. I could NOT take the outbursts, the accusations, all the crazy stuff any longer. No siblings to help. Dad passed when I was a kid. Thankfully one living brother of my mom, visited once a week. She was 87 when she passed in Dec. 2023, after 3 years at the nursing home. Sad, but finally the nursing home part of the dementia journey has ended.

The other piece of advice (helped me greatly) is to work with a talented therapist on your own to unpack all of this. The feelings of guilt or obligation, fear, sadness at the loss of your LO before they actually pass is a lot! You are grieving many things at this point and working with a talented therapist can really help you process all of this. I am still working w/my therapist, now into year 3+, started when the permanent nursing home placement decision was made for my mom, as she was then mid-stage AZ dementia.

Journaling is another good outlet. Just write it all out ANYTHING and EVERYTHING no matter how sad, awful, your rage at all of this, whatever. Let it all come out.

Hope you get through the "explain it, get them to accept it stage" as quickly as you can.

Good Morning,

You may want to book an appointment with a Geriatric Neuro-Psy doctor. Perhaps, the right medication(s) may control some of the symptoms.

This is how my mother started thinking that people were stealing from her. They can't help it, their brain is broken and the wiring is not the same.

This is quite common. But make sure someone is physically showing up and also checking on your father. It's hard for old-age couple when gets sick. They are both trying to hold on.

You have great advice already. I just want to add , check on how Dad is doing often . It is very difficult to live with someone with dementia. Maybe have him call you or FaceTime you when Mom is sleeping .
When the time is right , let him know it’s ok to accept hired help with caring for Mom , no matter what Mom says . Your Dad will need some breaks .

The spouse who is the caregiver of someone with dementia is often more stressed than the person with dementia who thinks they are fine .

All I can add to this is expect the unexpected and prepare for the future. This behavior will only get worse and chances are that she will become more volatile towards your father who is the primarily caretaker.

While there are no plans for facility care, that is something that should not be overlooked in your long list of things to research as this process can come with its own challenges.

As far as her denial, this is not going to stop and best make sure you just answer her in a way that tells her that you understand her feelings of fear and that you and your father are going to do everything to support her and take care of her.

Stay in touch with them to make sure you keep abreast of her behavior as this can change abruptly sometimes. Your father is going to be faced with extreme stress as her disease progresses and will need outside help and support, please help him find it. Sometimes caretakers feel the need to "do it all", but trust me when I tell you it can get extremely difficult real fast. Best of luck.

Some wonderful suggestions here from people who are living in the long goodbye of dementia. It will not get better. I can't add very much to the conversation except to continually check on Dad. He is on the frontline and is probably experiencing more verbal assaults and allegations that you can imagine. Being the "man" of the family, he is very likely to say he is managing well but could be drowning. And if he succumbs, who will take care of Mom? Try to visit periodically to check on both of them.

Begin to set up VIDs (Very important documents - Will, Advance Directive, PoA) for Dad. Sounds like it is too late for Mom but as her legally married partner most facilities will go with whatever he says.

Dad is going to need help sooner or later so begin to research the option and costs of home health care. And in case that doesn't work out get your ducks in a row and try to research the costs of some local good Memory Care facilities. I know you and Dad don't want to place her but you have to do what is best for all of you. If she is eventually placed, Dad can go back to be a loving husband instead of a burned out, tired caregiver.

And limit Mom's (not Dad's) phone calls and never forget to try to redirect (doesn't always work but it is always worth a try)!!
Wishing you luck and peace on this part of the journey

Seems she needs a psychiatric evaluation and treatment. She is experiencing anxiety from misunderstanding the world around her. A psychiatrist - preferably one that specializes in geriatrics - could evaluate, diagnose, and recommend treatment options.

CMarie70: Her brain lacks the capacity for logical thought processes.

Stroke is a brain injury. Symptoms vary. Recovery varies.

Some people will know & understand about their new deficits (eg see their weak arm, hear their slurred speech, feel their swallowing difficulties).

Some people will not be able to *feel* their deficits, therefore not believe or understand them.

The brain has the injury but the brain cannot recognise or understand it.

It's not really denial, but more a lack of insight.

Dementia may be a diagnosis given to describe this cognitive damage. In particular after a stroke, Vascular Dementia may be the diagnosis label (as stroke effects the vascular system).

It may be kinder not to even discuss the term Dementia with Mom.

".. and blames her issues on the strokes and claims she is getting better".

I'd agree with that! I think your Mom has given you the perfect slogan. That she actually has good insight!

Her new thinking challenges most probably ARE caused by the strokes. (I'd simply call them *brain changes*).
Regarding "getting better" she may or may not BUT everyone needs hope.

Gains are usually in the initial weeks but still possible (usually at a slower rate) even up to 2 years or beyond.

I wish you all well. It is a huge change for all of you to adjust to.

I never used the term Dementia with my Father . He said to me years ago " I think there is something wrong with me and there is no Cure . " I would leave Medical magazines around from Tufts and Harvard That had many ideas for a persons health and he would read them and do Puzzles . I tried to give him a nutritious diet . But I never used the term Dementia or OCD to him Its best to drop the Diagnosis label and encourage healing Like exercise , eating healthy , trying acupuncture or other healing Modalities .

Of course, 99.99% of people diagnosed would deny it. It isn't something most people would (want to) readily accept.

I am sure hundreds if not thousands of people experience this. The key is understanding dementia and how to communicate.

What to do? Nothing. Well... DO listen with compassion.

* Do not argue

* Never ever correct her (why would you: this just increases her anxiety and fears)

* You want to ease her stress and fears, not be 'right' and 'correct' - that doesn't matter and it won't help her at all.

* YES - you DO validate the person, not her words/thought process. She is in denial due to fears - who wants to admit they have dementia?
--- Learn how to validate her by actively listening.
--- A person having the cognitive ability to KNOW they have dementia (before it gets worse) must be one of the most difficult things to know / process. Give her a lot of compassion understanding how she feels (fear).

- And do set limits on your availability / schedule when you can talk to her AS she will continue to feel more stressed and fearful --- and call you more often. For yourself - You need to set boundaries (in a very nice way) "I'm busy with xxx now, I'll call you back when I can ... later ... tomorrow."

--- As is appropriate, see if you can find other support for her: neighbors, volunteers, social worker.

* Offer reflective listening (I hear you saying ... )

* Reflective listening is not agreeing; it is letting a person know you hear them - their fears - their concerns i.e.,

You reflect back to her - her words.

"I understand you feel ... that must be very difficult for you."

* Google Teepa Snow; watch her You Tubes, order her books, listen to her webinars. This will help you understand how to communicate as effectively as possible with a person inflicted with dementia.

Gena / Touch Matters