Helping Dad understand the diagnosis...with anosognosia

cla-2019

Hi, our Dad was recently diagnosed with Alzheimer's and we're looking to help him understand what this means/how it will change some of what he needs. Is there someone—a clinician, a social worker, or a group that we can go to in order to have an open conversation, where he (and we) can ask questions about his diagnosis and what care needs it implies? We have serious concerns about him living alone but he definitely has anosognosia, not remembering all of the times and things he forgets, and so it's tough to have productive conversations about moving into a more supported situation. His PCP is NOT a Geriatrician, nor has he been with that doctor for long (he has only seen my Dad since the decline had already noticeably occurred), and the PCP is also not local to us/Dad's de facto caregivers.

I've been finding lots of caregiver support groups, but I would love something for him and us together, ideally that can get a bit more specific about where he, in particular, is at and what he needs, both now and likely in the future.

Thanks.

SusanB-dil

Hi cla-2019 - welcome to 'here', but sorry for the reason.

The anosognosia will most likely not 'allow' him to understand what is happening. Anosognosia is not denial, but rather, the firm belief that nothing is wrong. Most folks on the forums don't really discuss the diagnosis with their LO unless the LO actually brings it up, and then only briefly.

is paperwork in order? DPOA and medical accesses are important. And on the PCP, we have a neurologist as well as 'internal medicine' provider on our team.

cla-2019

Thanks Susan — that's my worry. He's resistant to moving because he does not see a problem, but clearly needs to. We're really trying to ease him into it so it's less jarring, as I can see how change stresses him out and makes his symptoms even worse so had hoped there was a way to include him somewhat by giving him the opportunity to understand, but maybe that's not in the cards at this point.

And yes, paperwork is, thankfully, in order. We will need to find him a new PCP near us, and my preference is for a Geriatrician / someone accustomed to working with this condition. Sounds like a neurologist would be in order as well. Appreciate you sharing your experience.

psg712

One of the tough things about having a discussion about dementia and care needs is this: even if you are fortunate to have a great day and a productive discussion, the affected person is not going to retain the information. Or they will remember it incorrectly on another day. Or recall just enough to get anxious about it. It's truly unlikely that he can reason well enough to understand his need and agree to a move.

That is one of the many sad things about this disease. My mom and I, while not always in agreement, used to be able to talk through issues in detail and appreciate one another's perspectives. No such talks have been possible now for several years.

I feel for you. You are trying to respect and include your dad in the decision. You can at least listen to his concerns and offer reassurance that you are there for him, whatever he needs. The decisions themselves will be up to the POA.

M1

welcome to the forum. Sadly, you are tilting at a windmill to try to reason with him. You’re just going to have to make it happen without asking for or expecting his cooperation.

I tell this story on myself a lot: when my partner first became seriously symptomatic, I thought that if our doctor told her she had dementia, this would lead to an “aha” moment with insight, where she would realize the implications of the diagnosis and realize from that point forward that she needed to defer to my judgment, that she would have some sense of what she couldn’t do. Our doctor literally laughed at me when I discussed this with him. He told me to buckle my seatbelt for the upcoming roller coaster ride, and of course he was right.

So yes, it’s not in the cards. Make arrangements for moving him without consulting him, hard as that is. Safety has to drive the decision making. Many of us get adept at telling white lies or fiblets to get our loved ones to go along. It’s a matter of whatever works.

H1235

I agree with all the above. My moms memory is not too bad, it’s her logical thinking and executive functioning that are a problem. And I would honestly count anosognosia as one of the worts symptoms. She remembers the diagnosis and will tell you she has dementia, but will only admit to the minor memory issues and believes she is very early on. She wanted to lean all she could about dementia when diagnosed and I got her books and print outs. She wanted a book written for a person with dementia( I couldn’t find anything, because people with dementia just won’t understand/accept/recognize symptoms anyway). If she has a symptom now that is due to dementia and I tell her, then she gets mad that no one ever told her that. She is completely unaware of her lack of executive functioning. It’s hard to force a LO to make changes necessary for their wellbeing. They just don’t understand. I agree that fiblits are often the best way to handle things. Whatever it takes to ease their mind and make them less stressed and angry. Good luck.

cla-2019

Thank you, I see pieces of our story in each of yours, and that’s a help. Seems we’re in for a long and messy road here.

Sending compassion and strength to each of you.

Thanks for helping me get a handle on what lies ahead.