Having 'The Talk' About Getting a Diagnosis

LCBear · April 12

Hello! Happy to have found this forum because I'm so concerned about my dad. He has had memory impairment, social withdrawal, apathy and basically several symptoms that seem to be in line with Alzheimer's or pre-Alzheimer's MCI to me. Mom has been aware of the memory issues but taking a wait-and-see approach. Some things that happened recently crossed a threshold where I feel it's time for me to talk to her again. I've tried to prepare myself by reading about what the process is and anything I can find that is hopeful (I'm hoping drugs can slow it down).

She believes in focusing on happy things rather than worry. I wonder what works to encourage people that getting an early diagnosis is a good idea even if it's hard at first. I can't tell his level of awareness (I think he may notice memory lapses in the moment but not remember them), so getting him to go along with an evaluation is a whole other kettle of fish.

They aren't my legal parents, which matters to me not at all in this situation except that it might make it harder for me to support his care down the road. I may be moving out of state within the next year. I don't want to move given that this situation is going on, and it would mean so much to me for him to be getting treatment and for us to be facing reality.

H1235 · April 13

Welcome. Unfortunately treatment options are very limited and not very promising. I believe it also need to be started in the early stages. Many with dementia don’t recognize their symptoms or limitations(anosognosia). This can make getting them in for a diagnosis tricky. It’s generally best to avoid bringing symptoms to a person’s attention. It tends to cause stress, anxiety and sometimes anger. The diagnosis process usually starts with the pcp. The pcp would then order some tests (to rule out other treatable cases) and make a referral to a neurologist. While I wouldn’t want to get her hopes up that it could be something treatable, it might be a good way to get her moving towards a diagnosis. It can take months to get into a neurologist. It might be best to tell the pcp your concerns and symptoms you notice in a note or a healthcare portal (bringing these things up in front of your dad in the office probably wouldn’t go well. One of the most important things to do early on is see an elder law attorney! If your dad is still capable he should appoint a DPOA (probably your mom) and a a backup (you?). Since your dad can no longer make decisions for your mom if she were hospitalized, she should appoint a DPOA as well. I think the fact that they are not your legal parents shouldn’t be a problem as long as legal paperwork is done soon. I would not wait for a diagnosis. You might want to present it to him as just something that needs to be done since he is getting older. Again, pointing out his symptoms here will not help and may lead to an argument. Dementia care can be expensive. It might also be good to talk with the lawyer about finances and the possible need for Medicaid. I will attach a few links that might be helpful as your family tries to navigate this.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

understanding-the-dementia-experience.pdf

https://iona.org/therapeutic-fibs-ok/