RSS Feed Print
LO doesn't want to be diagnosed
Amy Sayah
Posted: Thursday, May 9, 2019 6:54 PM
Joined: 7/29/2018
Posts: 2

My dad is the main caregiver but I want to be sure I am there to help him. Mom hasn't be diagnosed, she really doesn't want to be. She has memory tests scheduled for sept but I will be really surprised if she is willing to go to them. Does she NEED to be diagnosed or do we just go with the fact that we know she has what she has and care for her as if she has been diagnosed with AD. Does she have to be diagnosed?
Amy Sayah
Posted: Thursday, May 9, 2019 7:07 PM
Joined: 7/29/2018
Posts: 2

In order to get home health care, does she need a diagnosis?
Posted: Thursday, May 9, 2019 7:29 PM
Joined: 9/4/2017
Posts: 14

It can be very helpful to have a diagnosis because some forms of dementia are treatable.  And some drugs that are helpful for some types of dementia are harmful for others.

 We went through neuropsych testing and as a result found out my mother has a type that is treatable in may cases (NPH).  Unfortunately the treatment didn't work for her, but for many the treatment makes a huge difference.

When we met with the neurologist he emphasized finding out what specifically is going on because sometimes you can do something about it.  Maybe you could use this logic with your LO. 

Posted: Thursday, May 9, 2019 7:37 PM
Joined: 10/25/2018
Posts: 238

I don't really understand what you are asking. If she is impaired, she needs to be cared for. This can be done at home, with just family/friends helping, or by hiring in home care. She wouldn't need a diagnosis for this. 

If some other entity will be paying for her care, like Medicaid, she would need a diagnosis.

If you want to get her prescription medication, which may or may not be beneficial, she would need a diagnosis.

If you want to invoke Power of Attorney, I would definitely encourage a diagnosis. Without a letter from a doctor attesting to her decline, POA can be revoked at any time.

If you can, consult an elder care attorney where they live. Certified if at all possible. I wish I had done so before my dad got really bad, but I finally did retained one right after my dad was almost arrested for assault.

caregiving daughter
Posted: Friday, May 10, 2019 6:56 AM
Joined: 11/27/2012
Posts: 2057

Most of us on this board would say our loved one didn't want to get diagnosed. You will often find even after the diagnosis, there is still no recognition of the illness. It's not denial, it's just a lack of understanding or the cognition to follow the new information. The term, anosognosia, is used to describe this state. Medication can improve the quality of life and may prolong symptoms--diagnosis would be needed to prescribe. Sadly, at times a pwd develops agitation and difficult behaviors--diagnosis would be necessary to refer the patient to a specialist. Financial decisions and arrangements may need to be made and a diagnosis would be necessary. I was in your shoes. I called the internist and asked how an assessment could be made.
Michael Ellenbogen
Posted: Friday, May 10, 2019 7:01 AM
Joined: 11/30/2011
Posts: 2388

 You must get a diagnosis. 

Rescue mom
Posted: Friday, May 10, 2019 8:25 AM
Joined: 10/12/2018
Posts: 810

A medical diagnosis is needed for many, many aspects of what you’re entering into. At the least, it rules out causes that can be treated—or sets up treatment if needed.

When my DH was going to be diagnosed, I told him early on we were going to memory clinic. Like you, this was 3-4 months ahead.

He didn’t like it,  but soon forgot about it (or dropped the subject or ignored it, whatever). After that, I just told him we were going to the doctor for some tests and/or follow-up; he did not seek specifics. I just set it up and told him (not often, just maybe a day ahead) we were going to the doctor for some tests his other doc wanted.

Eric L
Posted: Friday, May 10, 2019 10:45 AM
Joined: 12/5/2014
Posts: 1050

In the fall of 2017, we decided that it was time to try and see if we could have MILs long term care insurance kick into action. It's sort of a frustrating process. The LTC company will send out an "independent" RN to do an evaluation and they base their decision on the evaluation. MIL was initially denied. At the time, she was still pretty good at "putting on a show" for people and seemed way more with it than she actually was.

We appealed and one of the things that really helped us was the notes in her chart for her neurologist. They documented a decline that a half hour (in home) evaluation just couldn't show. If only for financial reasons, having a diagnosis was important. I believe that the neurologist was also able to validate the POA because of her diagnosis, but I am not as clear on that one.
Posted: Friday, May 10, 2019 12:49 PM
Joined: 10/9/2014
Posts: 641

There are varying reasons for getting the diagnosis.  I tend to think it's a good thing. But, even if mother refuses to go, eventually, she will get diagnosis, as she will eventually visit doctor for other issues and he will see her cognitive decline first hand. A physician with the right personality can conduct an office evaluation in an unthreatening and pleasant way.  

My goal after, my LO was diagnosed in office of primary with significant dementia, was to figure out why. Her doctor said Vascular, but, I wanted to make sure, since my LO was only 62 years old!  So, I took her to Neurologist for confirmation AND to rule out something like a brain tumor or some other condition that could be treated, like fluid in the brain problem. So, she had tests and MRI, which confirmed Vascular Dementia.  So, we knew what we were dealing with and were able to get the services we needed. 

I'd keep in mind that if mother is too fearful and not interested to know, it may be that she just isn't equipped to handle it. I would respect that, as much as possible, but, her caretakers may need to know more. 

Posted: Saturday, May 11, 2019 11:35 AM
Joined: 3/12/2017
Posts: 27

Getting a diagnosis now will make things easier in the long run. For this next, I'm not even going to mention the benefits for your LO, just what will make her easier to manage. Appropriate meds will help with behaviors, there will be a continuity of documentation that will make ongoing care better, and help will be easier to access, and possibly cheaper. For your LO life will hopefully be more peaceful and confusion will be less frightening. Getting a diagnosis can be difficult, but it really helps. Good luck with this task.
Jo C.
Posted: Saturday, May 11, 2019 1:13 PM
Joined: 12/9/2011
Posts: 9849

Hello Amy; this is a difficult situation and I am sorry for all that is happening.  However; yes, it is very important for your mother to have an accurate diagnosis for what is happening and also to obtain an accurate diagnosis for type of dementia if that indeed does become her diagnosis.

You have already been given much good input.  If your mother is balking at such testing and being diagnosed, it would be best to not mention dementia to her again, but to let her feel that she is going for a general medical referral.  Sometimes this is best.

There are meds that can slow down memory loss for a period of time for some people.  However; one needs an accurate diagnosis for dementia type as meds for one type can be contraindicated in another and even make things worse.  There are multiple types of dementia of which Alzheimer's is only one.

Hopefully your mother has already had a thorough exam by her primary MD with extensive labs run to rule out any possible physical causes for the changes she is experiencing.  There are many different physical conditions that can mimic dementia that are often easily treated.

The Alzheimer's Assn. has a Helpline that can be reached at, (800) 272-3900.   If you call, please ask to be transferred to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us with our problem solving.

I send best wishes to you; let us know how things are going, we will be thinking of you.


Posted: Saturday, May 11, 2019 1:29 PM
Joined: 12/4/2011
Posts: 17069

You really must get as accurate a diagnosis as you can. How do you know that your mother does not have a B12 deficiency or a thyroid disorder or any number of other things causing the behavior you are seeing. 

Additionally there is AD, LBD, VD, PDD and more and they are not treated with the same drugs.

This will help explain;

Posted: Wednesday, May 15, 2019 9:10 AM
Joined: 4/16/2019
Posts: 13

I am going through this process with my mom who would have never initiated being diagnosed and doesn't think she really has any problem. So we just treat appointments like they're no big deal and we don't give too much advance notice for her to think about it. We tell her that we just need to go for a check up. I can tell you that as a care giver you will feel better knowing what's happening. It validated my concerns and has helped us get more help and it's a relief that we aren't just imagining things. My mom has not mentioned the word Alzheimers once and that's ok. At least my brother and I know and are able to help her. And your dad needs to know as well. You can get much more support when you have a diagnosis.
Mimi S.
Posted: Wednesday, May 15, 2019 11:41 AM
Joined: 11/29/2011
Posts: 7036

Posted: Thursday, May 23, 2019 3:58 PM
Joined: 5/23/2019
Posts: 99

Greetings my dear

My name is Basilia Jackson a lady from U.S, i saw your profile and become interested in knowing you please contact

 me in my email address as a friend


× Close Menu