Very Young Onset – No Answers Yet, Just Holding On

It’s very hard to get o to any kind of specialists. I know 10 months is discouraging, but they really are not blowing off. When you see the PCP, tell him about the SLUMS score and ask if he can have donepizel. It supposedly helps slow the symptoms down. A look so doublecheck that he’s had bloodwork to rule out low B12 or thyroid issues. Those can have similar symptoms and are treatable.

So sorry about your husband’s diagnosis. A couple of other questions/suggestions: do you have a DPOA and HIPPA and medical POA’s? You will need them. Read the book “The 36 Hour Day” and look for Tam Cummings videos on YouTube. They will help you help your LO. 💜

Recent research; of course may not apply in your LO's case ;

https://pubmed.ncbi.nlm.nih.gov/40227745/

I remember when my DW at age 55 finally agreed to see her PCP about memory problems. I was with her doctor during that visit. The doctor, who knew my DW for years, spoke as if our concerns were unfounded and this was likely just stress related. I left and my DW was administered the in office cognitive test. The doctor came out a few minutes later and looked at me as if they had seen a ghost. It was a complete 180 in attitude and demeanor, and the doctor started sheepishly talking to us about brain MRI and neurologist referral. Your average PCP seems completely unprepared to recognized EO ALZ.

There are a couple factors in play here. One is that there aren't enough neurologists specializing in the dementias to handle the number of people who want appointments. This situation has been made worse since the availability of infusion drugs— people who might previously been seeing a PCP or geriatric specialist would need a neurologist or memory center to access these meds. I've been on a wait list at a well-regarded memory center for a year. Another piece is that these in-take appointments can be quite extensive— often there's a half-day appointment for history and screening, then tests are ordered and done at another date, then there's an appointment to review the results. Depending on the doctor and the information from testing, there's a high likelihood that you come away with a general MCI diagnosis with follow-up in 6-12 months.

Taking over IADLs like driving and financial decisions is a family decision; it is rare for a neurologist to make that call. Many physicians don't share the diagnosis with the patient at all. Dad's doc did but dad was diagnosed in the middle stages and had behavior issues. By that time he'd already done considerable damage to his assets— day-trading away $360K while mom refused to limit his internet access. I can appreciate that you'd be more comfortable restricting his independence having a diagnosis but it's critical to note that it is not a good practice to remind a PWD of their condition or try to reason with them about why they're no longer allowed to do things.

HB

it’s not that having to be the adult ( finances, driving, etc) isn’t urgent. It’s that there’s only so many patients a neurologist can see in a day. They don’t really have a lot of slots for new patients who have basically been diagnosed with dementia. His SLUMS score along with ruling out other things tells them it’s dementia. You could ask for a referral to a neuropsychologist in the meantime who just does the 2.5 hour tests to get a more definitive diagnosis. There’s not really a lot that can be done except the new infusion drugs and don’t think they’ve been tested on people his age. There are a lot of side affects. You can read up on those. I wish we could be more positive for you.

Regarding telling a patient a diagnosis. Most refuse to believe it because they know what it means. Those whose short term memories are already gone can’t remember it. The conversation and the reaction is then repeated multiple times a day. It becomes cruel after a while. My mom heard the diagnosis every time she went to the doctor. She never once appeared to understand what the word dementia meant. We ended up just discussing how old age means you often have a poor memory.

@BugziePal88

Some physicians defer to the spouse or family regarding sharing the diagnosis. Some spouses and family are very protective and become angered should a doctor use the "D" word in the presence of their LO.

One thing that is hard for people who are new to dementia caregiving is that the rules that exist outside of dementia do not necessarily apply. Safety trumps happiness and absolute transparency and honesty are not as important as feelings.

One size— is not— fits all here. It's one of those decisions can be very nuanced; what is best for one PWD might not be for another. Having been down this road with my dad and watched others decide for 2 of my mom's sisters, the husband of a longtime family friend and another friend's mom drove home the need for an approach that was individualized to the PWD.

My dad was informed of his diagnosis by both his neurologists. He had a form of alcohol-related dementia which meant he wasn't supposed to drink. It would not have been ethical to withhold that information given that there was treatment to reverse his cognitive losses considerably with a sober lifestyle. This didn't go well. He had anosognosia and was unable to appreciate the degree to which he was impaired. Telling him he had dementia felt like gaslighting to him and made him even more suspicious and accusing at first. Mother trying to remind him why he wasn't allowed to drive only angered him and nearly led to violence. Over time, he would tell people he had Alzheimer's but the term became meaningless to him.

With my aunts, neither was told. The sweet one wasn't fighting to do the sorts of things she couldn't or shouldn't. And the feisty one was beyond telling by the time she was diagnosed. My friend's mom felt her symptoms were a normal part of aging and she, too, was easy-going. The family friend didn't share with her DH. She and he had moms who died with end-stage Alzheimer's and she didn't want to worsen his depression.

YMMV.
HB

A line we use, often, is "you're not dumb, you just have memory problems." She knew the diagnosis when she received it but I'm not sure she remembers it now. She definitely is upset by not being able to do things and in the moment, that's what she cares about. What the future holds isn't on her radar any longer.

Cole, can you find an Alz. research center and see if your husband can be enrolled in any of their studies? that was super helpful for us in the early days because she signed up for every study possible when she had MCI and that put her in the pipeline for a PET scan that insurance wouldn't have covered. It also connected us with the university geriatrics clinic and geriatric psych. Even though he's not geriatric, they are the specialists in dementias and might be your best resource. It may not be neuro that you need after all.