How important is it for an elderly parent to have a diagnosis for memory loss?

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How important is it for an elderly parent to have a diagnosis for memory loss?

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My mom, at age 90, will have a neuropsych eval in a couple weeks due to accelerating memory loss. I am concerned if mom is told she has dementia or Alzheimer's, she will give up and have no hope for the future. Memory loss bewilders her and causes her anxiety. Must she be told she has dementia or Alzheimer's? By her choice, she lives alone, can handle all her ADLs, is in good health for her age, but cognitive decline is evident to my brothers and me. She has long term care insurance, but no claims have been filed at this point, because they have not been needed. My brothers and I are thinking ahead and trying to stay proactive about her care.

Alzheimer's & Dementia Care Decisions Mental Health

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Generally, a doctor needs to declare a patient "mentally incompetent" in order for a person with POA to take over managing affairs. Some medical insurance policies will require it in order for certain types of care to be covered.

Get a copy of her long term care policy and see what the particulars are for its use. Call the insurance company about questions using/filing for care.

In the meantime, talk to your parent about powers of attorney. Depending on your state/province, she can give a general power of attorney or specific powers of attorney (medical and financial) that kick in when she is no longer mentally competent. A local lawyer that handles elder law or family law can guide her and you through the process. If your mother is deemed mentally incompetent and there is not a POA, then somebody can pursue legal guardianship of her - a much more costly and lengthy process.

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She has a right to know. A rose still smells like a rose even if you don't know the name of the flower. Of course it is helpful to have a diagnosis to know the prognosis, say Lewy Body Dementia you might expect delusions and hallucinations and read up about symptoms to prepare, as well as medication choices. I know 90 is the new 60, but at 90? Here is the thing, anxiety is almost always related to the dementia itself and can be treated (somewhat), so that the person is not suffering as much. Neuropsych evaluations are usually 3 hours long, so I am hoping she is just going to have a few tests, say a MOCa just for the sake of seeing where her weakness and strengths are. It is a good base line for 6 or 12 months from now. It will also show if she can manage IADL's, banking etc.

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GracieLou: Perhaps you can phrase it in a way that doesn't state dementia is present. At some point, she will not be able to handle all her ADLs.

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In order for a POA to manage a dementia patient's financial and health care, the POA needs copies of medical diagnoses. Financial institutions and Long-Term Care Insurance companies require at least one doctor's diagnosis. Before I was allowed to manage my husband's IRA and make RMD's, I had to have an official diagnosis as well as a letter stating that my husband was no longer able to make financial decisions. The process of making a Long-Term Care Insurance Claim is not easy. I suggest you read your mom's policy extremely carefully. All insurance policies have caveats that minimize their payment of claims no matter how legitimate.

I was very naive' and uninformed when my husband of 57 years began showing undeniable signs of dementia. He handled all our finances during the ten years prior to my acceptance that something was very wrong with my husband's mind. It took me over a year to straighten out the mess that he had made. Caring for an ill loved one and managing all financial and health decisions for them and you are monumental tasks.

In my husband's case, I was able to get him to go to a neurologist and a neuropsychologist by saying that we didn't know for sure what was wrong with him. We discussed illnesses that impact brain function that are treatable, but we needed a diagnosis to know what was really wrong with him.

I recommend getting a diagnosis based on personal experience.

Best wishes

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Two different outcomes:
I did not tell my daddy he had Alzheimer's. He knew he had memory loss and I just let him know that we all forget things but I am here to help you. Soon he forgot he forgot.
My friend told her mother that she had Alzheimer's she went into depression and stopped everything, she did not take care of herself, she did continue to come to church, during the week she would just sit in her chair and have her cat in her lap. She did this for two years. She did die but I don't think she died of ALZ I think she died of depression - just my opinion on that.

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The depression could have been treated by a Geriatric Psychiatrist who could prescribe medications.

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In our case, I’ve found it not necessary at all for mom to have/know her mixed dementia diagnosis, but VERY important for dementia diagnosis to be in her medical records.

I have to add that after she got the diagnosis, I had to call back because they didn’t write it down. And - literally years later, the medical office/s ring my number and call me by mom’s name, telling me I need to make an appointment. I have to tell them mom has dementia and I’m not her - every. Single. Time. This is a ‘very reputable’ ( HA! ) medical group too. They never get it. Ever.

So imo having the diagnosis written down in the official records is important for handling medical needs , talking to the doctor, etc…however it seems people don’t read the dang records so be ready to point the written diagnosis over and over and over again!

Best of luck to you!

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I think that having a 'baseline', so to speak is important. I'm 'watching' my MIL deteriorate and as my DH relates to me her continuing deficits--I asked him if she were worse or better.

B/C she never HAD a geripsych eval, who knows how much 'worse' she may be?

The family is at a point where my DH's POA may be called into play, to possibly place her in a NH against her wishes. BUT--there is no hard evidence that she's worsening. The kids all have buried their heads in the sand and you get one kind of report from one and a totally different take from another source.

Just so YOU know what is happening--it's important to know a LO's state of mind, just so you know how to treat them and what can possibly expected as far as their abilities.

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I am glad she will have a diagnosis. If she ever needs to use her long term health care she will need a diagnosis. Since she has her ADLs she may still be early stage and perhaps aricept and/or Namenda would help to keep her functioning. She doesn’t need to be told “Alzheimer’s” but “Some-memory loss for which there may be helpful meds.

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I think it’s very important. It made all the difference for my dad’s care once there was a firm diagnoses. I don’t think it will make your mom give up hope, it can help her get the help she needs, and if she does have dementia, soon she won’t even remember she has it. But it can help you a lot with getting her the right kind of care.

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Get the POA before the diagnosis. Our lawyer had to have a private conversation with my dad before allowing him to sign. Any signs of dementia and she wouldn’t have let us proceed. Luckily we did it at the first signs. He totally understood what he was doing.

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it’s cruel to tell a ninety year old they have dementia . There’s no cure and there’s no halting it. What’s the point … just creates depression anxiety .
she’s good with her ‘ADL’s ‘
there’s ‘ articept’ and similar meds
to slow progression for awhile in some people… I’d try that and refer to it as normal aging memory loss.
make sure POA wills in order and get her all supportive help she needs to feel comfortable and safe.
if you absolutely need a diagnosis
a conversation with GP neurologist
or gerontologist with those 6 or 10
questions should suffice. But I would
protect my 90 yr old parent from those cruel words.

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I wouldn't. People deserve to know the truth. Perhaps she can be in clinical trials or contribute to research.

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For her safety, an accurate diagnosis is necessary and, a level of care needs assessment given by PCP or geriatric specialist. Be sure that a POA for medical and legal and financial decisions be determined among you and your brothers and, get all papers signed and designated by your mother while she still can, if this has not already been done.

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It's nice to have the paper, if you need to seek guardianship. We thought it would help my mom understand that she needed help, but she ignored the anything that showed deficiencies and only paid attention to the parts where she did good. Even with memory loss, no one (doctors, social workers, etc.) seem to be worried, unless they start leaving the stove on, falling or wandering.

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Never promise anything! If you have to say something, just say, "I will do my best."

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We never saw a neurologist. Moms geriatrician was qualified. There was no real point in dragging her to another doctor. We wanted a diagnosis on the record. It may help down the road with medicaid and NH placement when her money runs out. We also got a POA the minute we saw dementia..my mom was very open to that also.

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A diagnosis could be important for the LTC insurance
An accurate diagnosis is important with some types of dementia. (Lewy Body, but that comes with other medical conditions so it can be ruled out more easily. And Vascular typically mini strokes are involved.)
If a person is experiencing memory problems I would do testing without the use of MRI or CT scans and other testing that may require the person being tested to be sedated.
A diagnosis of "Dementia, probably Alzheimer's" would be sufficient for most things.
Telling your mom would be up to you if you think it would really upset her. But is it not her right to plan? What decisions would she make as far as advance directives?

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The most important reason to have a diagnosis I can see is if she is uncooperative about receiving help and you or someone has a jumping or durable POA that needs a diagnosis to be in effect. The most important reason not to get a diagnosis yet is if her legal paperwork isn’t all set, POA/DPOA, health care directives, will etc can’t be done once she has a formal diagnosis so make sure that’s all done first.

My mom has had 2 Nuro-psyc exams post stroke. I wish she had had one prior to the stroke so we had a baseline but it was never mentioned. I don’t believe a “type” of dementia can be diagnosed simply with one of these exams and in our case they referred to memory loss and logical thinking rather than labeling it dementia. Now in our case Mom has aphasia resulting from the stroke so it was difficult in some areas to know wether the problem was her getting the words out correctly or her actual thinking which is why it would have been helpful to have one of these prior to the stroke. The results and result consultation with the examiner focused more on her areas of strength and areas of concern when it came to her living alone again and on her own. We of course knew she couldn’t be as independent as she had been prior but this gave us all a place to go from and her the information based on the exam rather than her kids. She couldn’t reason out calling the fire department for instance if there were a fire or calling one of us never mind a service if she had no heat in the winter, she was unsafe on her own. It also helped solidify why she wasn’t going to be able to drive again. The other thing it did is show areas of improvement with speech therapy and time as well as areas of backslide from the prior exam.

If you are interested in exploring possible medications to help slow progression or help anxiety from our experience a Geriatric Psycatrist or therapist is the way to go (she had been on depression medication for many years prior to stroke) and if you are looking for an actual diagnosis of type and progression of dementia a neurologist will need to be involved I think for combining brain scans and symptoms but the cat is definitely out of the bag wit a neurologist doing a through exam. The neurologist was the only one who came rite out made it clear to Mom he assumed she has dementia. Somehow the label is far harder to hear and she argued with him and left in tears, everyone else including us refer to her thinking, memory issues as being since the stroke. She accepts that she has cognitive issues but as a result of the stroke like her speech, this is not a lie aphasia affects her brain but we know she also has dementia going on, in the end it doesn’t really matter what’s the source or type is the fact is she has cognitive issues and we work from there.

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Also, some POAs are not in effect till a doctor/s have declared the person incompetent to make informed decisions.

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when my mom moved to memory care , I would not have consider her to be incompetent, the NP suggested it be done… streamlined everything for me. I didn’t share with my mom..

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Does your mom have her affairs in order? POA, health surrogate, a trust set up, etc? That should be done while she's able to make good decisions about the future. My parents had a will and after my dad passed away in 2016, my sister who works for a real estate attorney helped mom with the revocable living trust. Probate can be complicated and time consuming

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From your profile: "I'm caring for my 90-year-old mother, along with 3 younger brothers that still work full-time. Most of the care falls to me because I am retired, but I live 50 miles away from Mom, and can't make the trip to her house but once a week. I make all of Mom's appointments and my youngest brother and I share responsibility for getting her to those appointments.
Mom lives alone and wants to stay in her home. "

What is the "most of the care" that you do for your mother?

Don't be surprised if your brothers expect that you will be the plan going forward.

Of course your mother wants to stay in her home. Most people do. What kind of LTC insurance does she have? What does the policy say for when it will start paying out?

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When my mom started losing cognitive abilities in her mid 70s, I eventually wanted a diagnosis, for ME. I wanted to know what I was dealing with. So, first it was MCI mild cognitive impairment. Then a year or so later, dementia diagnosis and doctor telling her not to drive. Doctor told her that she had dementia. She did not believe it and was mad about the not being able to drive thing. I just decided not to push any of it. It does NOT matter is they agree with their diagnosis, and I just refer to it as her memory issues instead of dementia. So, it's possible your mom will also deny that she has dementia if told she does and that's OK. Just leave it at that. If her short term memory is as bad as my mom's, she won't remember it, even if told.

I'm not sure what the LTC care insurance covers. Are you helping her out a lot? I started with adding a cleaning lady for my mom since she couldn't take care of her room and change her sheets, etc. Then added a little bit of caregiving which increased until I put her in AL. Going into AL before her memory gets worse is a really good idea so they have a chance to make friends and learn their way around and participate in activities.

Don't make the mistake of ever promising that she won't go into a facility. This is just not fair to any of you since caring for someone with dementia is tough!

Best of luck.

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My mother had dementia, lived in Memory Care Assisted Living when it became advanced, and still did not believe it if the doctors told her why she was needing to live there! Everyone ELSE was crazy, She was fine. She also took no meds specifically for dementia bc there really aren't any that will slow down the progression. Only meds to treat anxiety or specific symptoms related to the dementia. A diagnosis is helpful to know what's happening, but not vital to her treatment since there isn't any!

https://www.dementiacarers.ca/when-the-person-with-dementia-doesnt-know-they-have-limitations-anosognosia/

The truth is, your mom is not in good health with dementia and now needs to use her LTC insurance she's paid handsomely for all this time, to get in home help before a crisis occurs. Help with cooking, cleaning, showers etc will be needed as time goes on and memory loss becomes more profound.

I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.

ThUnderstanding the Dementia Experience, by Jennifer Ghent-Fuller

https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Best of luck to you!

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My parents were in their 90s when diagnosed and were never told. Neither ever had a brain scan, but it was clear from affect and actions that they had dementia.

In their case it was the right way for doctors to handle it as they had 24/7 care in the home already due to other issues. I was never in doubt once their symptoms started and I’m no expert, but the difference from normal is profound. They were no longer the same people and I didn’t expect them to be.

I am a realist in other areas of my life, so it carried over.

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We didn’t bother with any brain scans either for my Mom or FIL . It was very apparent they had dementia.
Mom’s doctor said don’t tell her , due to her narcissism .
FIL doctor told him and FIL became irate.
We don’t bring up dementia to him .

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I think they should know even if they forget the next day. Moms Neurologist sat down in front of her, looked her in the eye and told her. A few days later she told me there was an article in the paper about the thing the doctor told her she had. There was an article on Dementia.

A diagnosis will help know what kind she has so she gets the right meds.

Your Mom will not be able to continue to live alone. If your not living with her 24/7 you may not be seeing her sundowning that happens late afternoon early evening. She may put a pot on the stove and forget it. She may start wandering. Dementia is very unpredictable.

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Most folks are more than aware that they're having memory issues, and often prefer to live in denial about it.
And most folks your moms age do have some memory issues just due to old age.
If she is diagnosed with some form of dementia, you don't have to share that with her if you think it will upset her.
My late husband was diagnosed with vascular dementia in 2018, and I never told him. He knew things were "off" with himself, but I don't think he knew he had dementia, and I was ok with that.

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"Must she be told she has dementia or Alzheimer's?"

There are many ways to say so. Honesty does not have to be blunt or cruel. Eg You have good health in these areas.. ABC. Your short term memory is not as good as it was. This can worsen with age. Let's aim to add in more help as you need in the future.

I heard a very blunt Doctor once tell his patient;
"You are 90. Your brain scan shows a 90 year old brain".
The patient just shrugged & nodded. With a look like *fair enough!*
He made no further comment.

"..can handle all her ADLs".

For now. Start planning for when she can't. Having a supportive & loving family is a blessing. A caring approach is wonderful - just add in the practical too.

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Totally agree !! And that blunt doctor !! It’s cruel word ‘dementia’ ‘Alzheimer’s’ …

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Gracie, can we start with a few questions?
Who is mom's POA at present? Has she designated one? Has she done a will and an advance directive?

One of the important reasons for diagnosis would be that, if your mom is failing and entering into a time when she may no longer be competent in her own protection, nor capable of judging her safety to live alone, she will need a family member to act for her protection. Now is the time when she must appoint people to act for her if the time comes she cannot act in her own behalf.

This is a time of high anxiety. Allow your mom to express this and don't negate her feelings of worry. Assure her you will all be there to support her in every step of her life. Don't lie to her. Cushion the truth as gently as you are able, but this is, imho a time for honesty. Anxiety is normal. When you think of it, cradle to grave, there are many passages in our lives that cause us pain and worry. This is just another one.

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How important is it for an elderly parent to have a diagnosis for memory loss?

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