What are the downsides to not having an official diagnosis of Dementia?

[Anonymous]

Please help me and my extended family with a reality check.

We have a family member who is displaying signs of cognitive impairment, to include bouts of extreme anxiety (currently medicated but by no means under control), confusion, and paranoia. But this person has been to a number of doctors, where the family member has held it together during their brief discussion, so no doctor has made a formal diagnosis. Also, for some inexplicable reason, no health professional (they live outside of the DMV area) has felt the need to administer the Montreal Cognitive Assessment, or ever interviewed his spouse to see what she has to say about his challenges.

Some decisions need to be made soon, such as selling cars (he has voluntarily stopped driving), handing over banking, and most importantly, updating power of attorney docs, health care directives, etc. But unsurprisingly, the paranoia is once again surfacing, but intermittently. When this person starts to torpedo all responsible efforts to get things squared away, would we have any recourse if he had a formal diagnosis? Or is this guaranteed to be a shitshow no matter what?

[Anonymous]

Op, just answering from our own experience with 4 elders who have passed, no. Get someone trusted in the family on the bank account right away. If you have to, Power of Attorney can be done when needed, even in the hospital. Same w/ Health Care Directives. IMHO important to know -- do you you have anyone in the family, with decision-making power, who has extreme outliner opinions re: medical stuff.

If people are reasonable, reasonable decisions are made.

[Anonymous]

See what is already in place and see what you can get in place cooperatively by saying how it can help them now such as someone can pay their bills if they can sign on bank accounts (but don’t have liability for bills) and have online access. A trusted person having access to online accounts, passwords and recovery emails helped a lot with bills and finances. We only needed the diagnosis for claims on long term health insurance. I faxed letters to the doctors to tell them what I noticed so they would look for those things as well. I agree with previous poster that relatives with differing opinions (or in denial) make it challenging. PS the general Power of Attorney was helpful, but it seems like every bank and agency has their own power of attorney form they want signed so if there is an important account you may want to make that a priority.

[Anonymous]

If you have to deal with Social Security or retirement from OPM, having the diagnosis will facilitate a competency determination. Those entities do not accept power of attorney documents.

[Anonymous]

Get the diagnosis. You may have to quickly get the person deemed incompetent at some point...(personalities can change and become less compliant) so better to have that done.

My experience is no doctor ever suggested these evaluations until I called and shared all my concerns. They can put on a show at the early stages and nobody wants to piss them off. You have to push for it with the doctors and share specific concerns. They cannot say anything back without a signed release, but they do need to take note.

Excuse my french, but there could be that one A-hole in the family who remains in denial without a diagnosis and sides with mom or dad to not do X, y or Z to keep them safe. I have a sibling who is physician who was that a-hole. The parent with dementia ended up getting into major legal trouble-long story and I was the bad guy pushing for over a year for an evaluation, taking away car keys and other things. So, I was demonized and ostracized while she was the saint. I endured tantrums and verbal abuse to finally get the parent evaluated. Scans revealed MAJOR atrophy of the hippocampus, etc, that could not possibly have just happened within a few months or even frankly a few years, but still I was the bad guy. Suddenly the doctor understood something was really wrong, but never took responsibility for feeding the denial and abuse.