Early onset Alheimer

Tina T.

My brother 62 has been diagnose with Early On Alzeheirs could someone share what does a through evaluation look like: what does the team who would look over his care look like: what are question he should be asking: I need specifics because as of now, his primary care doctor is making all the calls on his treatment plan which I think is not right and I could be wrong. HELP.

Damiross

I talked to my wife's doctor about a thorough evaluation. I know there are different types of Alzheimer. There is no cure for any of them. I could not see any benefit to adding more confusion to my wife's life for something that may or may not be helpful.

Bottom line: make sure you have an advanced health directive so you can make the decisions for your brother

Victoriaredux

I'm sorry to hear about your brother . Does he have a spouse/partner/child who would be the one to step in to organize care for him [finances,health , living arrangements etc] or would that be you?

There is no cure , some meds for some, allow the PWD to "tread water." Some PCP do a great job being the lead doctor , some defer to a neurologist at least for testing. Ruling out things like [https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph] .

After other conditions that could mimic or create the same early symptoms are ruled out a good PCP with maybe assists from a Geri-psych specialist [should behavioral issues appear] can work until it is palliative time.

Getting your brother in to an elder law attorney so that whomever will be seeing him through has the right documents and a financial game plan would be good . Your brother can't be expected to ask and remember what he is told going forth so his proxy should probably be making the visits- asking the questions with him .

PlentyQuiet

DH was diagnosed at age 60. We ended up getting the spinal tap done as that made it easier to get him qualified for SSDI. Two years on SSDI and you are able to be on medicare - even if it's too early.

These things have been a lifesaver for us, a bit of stability in this whirlwind

harshedbuzz

@Tina T.

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

There is no one correct answer to any of your questions.

what does the team who would look over his care look like:

I have personally seen this done several different ways. My dad, 82, was seen by 2 different neurologists who specialize in dementia at a top university Memory Center. He had mixed dementia and underwent bloodwork and imagining (Including a specialized PET scan) as well as a short neuropsych evaluation with the team's psychologist. As he progressed and behaviors driven by anxiety and agitation were an issue we added a geripsch for medication management. This doctor was the most valuable resource for us— more helpful than neurology or PCP.

My one aunt, 90, was evaluated and treated by her PCP initially and later by the gerontologist at her CCRC. My dear friend's mom, 91, was treated by her PCP who saw her through not just dementia but also breast cancer which they elected not to treat.

My other aunt, 85, saw a geriatric specialist after her PCP referred her out. This doc acted as her new PCP and was adept at managing psychoactive meds for her agitation issues.

Dad did not take any of the oral dementia-specific medications. My younger aunt and friend's mom both did. These are not curative and don't even slow the progression of the disease, but they do help some people in early/middle stages function better. My older aunt could not tolerate the GI side effects and stopped them.

The newer infusion meds were not available to any of these people. That said, these new meds, which can help a person in the very early stages remain there for around 6 months longer before progression, might not have been an option for any of them as they are only indicated for confirmed Alzheimer's and seem to work best for younger folks— especially men.

There are some folks who should not take these infusions because of having 2 copies of the APOE 4e gene are at greater risk of brain bleeds and death. The infusions are done every 2-4 weeks, require considerable testing and imaging follow-up and are expensive and can be hard to access in some areas.

what are question he should be asking:

Are you his medical advocate? Or does he have a spouse, adult child, friend acting in this role? Early on, your brother might ask for a referral to a memory center if he is interested in aggressively treating this. He might not be and should be discussing his end of life wishes with his POA. At this point, getting the legal stuff, including SSDI, might be more important to his wellbeing than the medical piece.

I need specifics because as of now, his primary care doctor is making all the calls on his treatment plan which I think is not right and I could be wrong

Early on in the disease, this is your brother's call to make. Staying with a PCP is not necessarily the wrong option. Being younger, getting a complete work-up could be one choice. That said, having been through this with others, when mom showed some memory issues, I started with her PCP to rule out treatable causes that can mimic dementia. He found she had Lyme Disease and she improved quite a bit with a course of treatment. Given her age and general health, we both decided we would not move up the chain to a specialist.

HB

Tina T.

Thank you .. all of you that answered. I really appreciate.

There is so much to take in and the worse is that my brother feels that it may be 10 or 15 years before it gets serious. He is still working and driving to work. His kids and wife are not there for his best interest so my sister and I are trying to figure out what to do. I dont know how to tell my brother that he has to sign up SSDI.

So much to take in, read and coordinate.

H1235

I have attached a staging tool. This may help with where things are headed. I agree with others that legal matters need to be a big priority. The basics would be will, durable power of attorney, medical poa, and living will. Dementia is very expensive, so it’s best to have the financial part of things figured out as soon as possible. While he may be able to drive and continue to work for now, obviously that will change. The thing is he will NEVER come to family and say “I shouldn’t be driving or I can’t work anymore “. People with dementia often have anosognosia. This is an inability to recognize their symptoms or limitations. If confronted with theses symptoms or limitations the person with dementia often becomes angry. It makes things very difficult. My brother told me mom could still do her own laundry, until I saw that she had run the washer twice without adding clothes. Mom used the same toothbrush for almost 2 years because I thought she would be able to swap it out when she was provided a new toothbrush. You need to keep a close eye on things. On top of that no one wants to take their loved ones independence away. As a sister, vs daughter or wife, I think you are probably in an even more difficult situation. I hope something here helps.

DBAT.pdf

1676316940835_Notices.pdf

Victoriaredux

https://alzconnected.org/discussion/comment/259183#Comment_259183

Since he is married & working it is IMPERATIVE that his wife get on board like yesterday with the facts of his disease. If there are benefits from his employer he needs to protect them so he isn't fired for cause and lose them. Ideally short and then long term employer disability until he can retire. SSDI dovetails with them .

The Elder law attorney can refer them to a employment attorney to handle the benefits. Some people when they get the Dx go out on disability immediately to try to protect the benefits. Not sharing his condition outside the immediate family is important for that reason.

Here is a directory of elder law attorneys: https://www.nelf.org/attorney-directory-search

Driving with dementia is risky as there can be a visual element and some people report here insurance won't apply after the dementia Dx.

towhee

For information on a thorough evaluation-

Medical Tests for Diagnosing Alzheimer's & Dementia | alz.org

How Is Alzheimer's Disease Diagnosed? | National Institute on Aging

Dementia Diagnosis | Stanford Health Care

The alz.org site has a lot of general and useful information, just ignore all the fundraising pop ups. The NIA site also has good info, but in my opinion they tend to soft-pedal things such as driving and working with Alzheimer's. With the Stanford site, click thru the arrows on the bottom right, but also click down thru the menu on the left side of the screen. I also recommend the book The 36 Hour Day.

In general, the younger a person is the more tests they will do before giving a diagnosis of dementia. If you are 40, you get all the tests because dementia is so rare at that age. With my LO, who was 87, they diagnosed based on history, the MMSE, and blood tests to exclude physical issues (which were done by the PCP). We went ahead and had the CT done, but they would have diagnosed without it. The diagnosis was made by a neurologist, but only because my LO was already being seen for a different issue. For my cousin, who was 61, they did the spinal tap and several hours of cognitive testing as well. He was referred for diagnosis and cared for by a neurologist at a Memory Center. I think the usual path is to start with a PCP, who may or may not then refer to a neurologist or other specialist. These days it may take 6 months or more to get an appointment with a neurologist.

You have gotten some very good advice on getting the financial issues taken care of asap and also on applying for disability. The advantage of social security disability (SSDI) over simply taking early retirement is that you get the full amount of your retirement benefit and it is possible to get Medicare before age 65. You do have to be no longer working to apply for SSDI. Lawyers are expensive, but necessary.

From a distance, it is very hard to get a true sense of where a person is in the disease. You really have to live with them for several days to have an idea. I think you have already noticed that your brother is not an accurate reporter of his doctor visits. It is not unusual for bad judgement to show up at this stage, along with some paranoia. You are going to need all hands on deck for this, please do not burn any family bridges based on what he says without verifying.