How to Start?

BLZ

Hello,

I am new to this site, trying to gain information on how to get a diagnosis for my sister.  I've brought her to live with me from another state, but she thinks she is just visiting and wants to go home, despite several conversations about her need to stay.   I have talked to her about her short term memory issues, but I am unsure how to proceed to get a doctor to say she has Alzheimers.  She is smart and knows a lot of facts but her behavior fits every sign to watch for.   When I took her to her her primary care doctor about this, he gave her a short test that she scored high on.  He was satisfied that she was good to go.  

Where do I go from here?   When someone first meets her, they may notice she is quiet or a little quirky, but they might not see anything wrong.  But spending any time around her reveals a lot.   Are there other tests that doctors can give that would diagnose her condition?   It is hard for me to feel comfortable telling her she has the disease that took her husband a few years ago, without a doctor's diagnosis.  

Any suggestions would be appreciated.

BLZ

M1

Hi BLZ and welcome.  Maybe you can make her an appointment with someone in your area.  It's not uncommon for people with a lot of "cognitive reserve" to score well on the screening tests, but as you said it's their ongoing behavior that you observe that is diagnostic.  But:  trying to convince her of her issues is likely fruitless, I thought the same thing early on and our doctor laughed at me.  Most folks on this forum would tell you to not try to reason with her or discuss her diagnosis with her, it will just make both of you frustrated.  Many PWD also have anosognosia, which is the inability to recognize their deficits (you can read about it).  You may have to tell her something like "Medicare requires you see this doctor for a wellness check" or something on that line to convince her to go.  You should write down your observations to give to the doc ahead of time.

If you do not have power of attorney for her, it is never too soon to work on this with a certified elder care attorney, who can also help you update her will, if needed, and look at finances:  if she might need placement in the long run and she would need Medicaid eligibility for that, you have to start early and manage assets carefully.

Good luck, there are lots of wise folks here who are happy to share experiences.

Cynbar

I agree, make an appointment with a new doctor near you. If the last doctor was in your area, suggest a change. Write an email or letter beforehand, outlining the symptoms/behaviors you are seeing despite the fact she scored well on the previous test. The doctor can't talk to you without the necessary permission slip signed, but he can and will take in information. Then, before the appointment, try to talk you sister into authorizing the doctor to speak with you as next of kin, the office will usually have the consent forms as part of their new patient packet. At that point, you'll be able to consult with the doctor about what steps to take next.

BLZ

Thank you so much for this information!   I do have a signed form for her doctor, so I can speak to him.   In fact the same day I joined this organization, I sent him a message asking for a recommendation to find a doctor who specializes in Alzheimer's disease.  I will research anosognosia today and start a list of behaviors.   

I think I'll be on this site a lot!   

Wilted Daughter

Hello BLZ and welcome to the site. It took 6 yrs+ and 2 doctors for a formal diagnosis for my mother (89, moderate Vascular Dementia). First doctor performed MCI test with showed mild decline although additional tests were ordered mom did not attend and switched doctors. When the behaviors became a large elephant in all rooms of the house, I sent a message to the new PCP describing the behaviors and my concerns. A clinical psychologist performed testing which concluded a type of Alzheimer's dementia disease. Then PCP ordered MRI which concluded moderate Vascular Dementia. He only wrote "Dementia" in her medical notes.

I found that there needs to be constant assertiveness for the diagnosis to be documented in medical records and follow up treatment plans, etc. across different agencies. During this time my mom was confabulating through all appts., conversations while behaviors where border line "insane". To this day I believe she still is in denial, but that may be the symptoms causing her to say, think, and try to do things that are not possible or that demonstrate poor judgement. 

Local elder services agencies and ALZ helpline may be able to offer referrals for diagnosis (i.e. memory clinics, clinical psychologist,  neurologist, psychiatrist). You might be able to work around the PCP for now then circle back or find a new one now. Based on her insurance  you may be able to make appointments directly. Hope this helps and I wish you and your sister the best!