Friend diagnosed with Early Onset Alzheimer's?

[Midpack]

Just learned this weekend that a 57 yo friend has been diagnosed with early onset Alzheimer's, he's a year younger than me (yikes). He is still working, no thought of retiring...

Been trying to read up on what a friend can/should do in support, but most everything that Google has turned up seems geared toward the patient (understandably). What I did read seemed bleaker than I expected for the "early onset" variety, and another friend told me he had a college buddy who went from running a large Allstate branch to diapers in about 2 years at age 57.

Any experience and counsel on what I can do as a friend?

[shotgunner]

My father passed from Lewy's Body Dementia which is a very aggressive dementia, he lasted 5 years from diagnosis.

First thing to do is to put all legal documents needed in place while he is considered lucid enough to legally do so. Especially important would be trust, DPA's and Living Will.

If that person has ever dreamed of doing something i.e. bucket list, they need to do it now. If they feel like they need to be right with the Lord, do it now. If they need to make things right with others do it now.

He will probably go through stages of care, very rapidly, home care, to assisted living to nursing home. Good idea to look at what is available, the costs and how to prepare for those costs now.

When my father was in the final stages and in a nursing home there were a few early onset cases, the saddest was a female pediatrician in her 50's and reduced to diapers as your say.

To my mind such a diagnosis is the same as terminal illness, i.e. limited time to accomplish things, only death of the mind will come before death itself.

Very sorry for your friends circumstances. Best wishes to him.

[MichaelB]

That’s tough for your friend. He’s going to need lots of help. There’s no predicting how long it will take or how bad it will get. Does he / she have a family? It will be hard on them.

There are legal and financial matters that are mandatory. Setting those aside and getting to your question, he needs real friends now who are willing to spend some time with him on a regular basis, and that way, help track his state of health and help him continue living his current lifestyle as long as possible. The cognitive decline puts him and others at risk, so accompanying him to run errands, joining him when he goes to out (sports, etc), or just doing the driving is an important assist.

[Midpack]

Quote:

Originally Posted by MichaelB That’s tough for your friend. He’s going to need lots of help. There’s no predicting how long it will take or how bad it will get. Does he / she have a family? It will be hard on them. There are legal and financial matters that are mandatory. Setting those aside and getting to your question, he needs real friends now who are willing to spend some time with him on a regular basis, and that way, help track his state of health and help him continue living his current lifestyle as long as possible. The cognitive decline puts him and others at risk, so accompanying him to run errands, joining him when he goes to out (sports, etc), or just doing the driving is an important assist.

Wife but no kids, she will probably need a lot of help. He's "in denial" so far, so none of us can acknowledge that we know yet. I don't know if they plan on a second opinion or not (or if it's worthwhile).

Very sad...day at a time for now.

[MichaelB]

Quote:

Originally Posted by Midpack Wife but no kids, she will probably need a lot of help. He's "in denial" so far, so none of us can acknowledge that we know yet. I don't know if they plan on a second opinion or not (or if it's worthwhile). Very sad...day at a time for now.

Denial? That's bad. Regular tracking by a neurologist is very important right now.

His wife will need lots of help, especially if she wants to keep him at home as long as possible. Spending a couple of hours a week with him doing stuff would be very helpful to her, more so if it is something she can plan around.

[Mulligan]

Quote:

Originally Posted by Midpack Wife but no kids, she will probably need a lot of help. He's "in denial" so far, so none of us can acknowledge that we know yet. I don't know if they plan on a second opinion or not (or if it's worthwhile). Very sad...day at a time for now.

As long as he is in the denial mode, I would treat my interactions with him like you always have and not change anything. Maybe offer your sympathy and support to the wife for now as I am sure she would appreciate it. I know if I got diagnosed with that, I would stay in denial mode as long as possible.

[Animorph]

My dad died of Alzheimer's. Mom took care of him for all but the last 6 months. It took maybe 10 years or so, and most of that was pretty decent quality of life for Dad, as far as I know. I don't recall any diapers until the end. I think the biggest need eventually will be to help the care giver. Her husband will need around the clock supervision after a certain point, and lots of help after that. You may be able to watch her husband or fetch stuff outside the home occasionally to give her a break. Or provide her a friendly ear and conversation.

[bbbamI]

I am so sorry...

My experience with Alzheimer's...the caregiver needs support the most.

Be a good buddy to him. Enjoy your time together and lend an ear. As Animorph said, give his wife a break by doing errands or staying with him. She will be exhausted both mentally and physically.

[eytonxav]

Quote:

Originally Posted by bbbamI I am so sorry... My experience with Alzheimer's...the caregiver needs support the most. Be a good buddy to him. Enjoy your time together and lend an ear. As Animorph said, give his wife a break by doing errands or staying with him. She will be exhausted both mentally and physically.

Midpack, sorry to hear about your friend. +1 on the caregiver support, as this disease can be tougher on the loved ones and friends who watch whats happening day in and out. I had a neighbor whose father was a brilliant PhD scientist at IBM Corp who came down with Alzheimers in his early 60s, and he went down hill pretty quickly.

My boss' father is in his 80s and has had Alzhiemers for many years and now can't even recognize his son when he visits, but he has been hanging on for several years (with the past few being in a nursing home).

Midpack, what triggered your friend's diagnosis and have the Drs offered any encouragement and/or indicated what to expect?

[Midpack]

Quote:

Originally Posted by DFW_M5 Midpack, what triggered your friend's diagnosis and have the Drs offered any encouragement and/or indicated what to expect?

Just found out Saturday, and only learned from another mutual friend who pulled me aside when we were all together last Saturday. Haven't seen his wife for a few weeks, and there's no evidence of anything yet. He seems the same as always, a little forgetful (though seemingly no more than the rest of us older dudes), and for a while now he gets flustered talking sometimes and says 'you know I have short-term memory loss.' He's said it several times, but I never thought anything of it, and I hadn't heard about the diagnosis then (he may not have either). Not sure what triggered the diagnosis.

Guess all I can do is treat him as normal and watch for changes in behavior, and be there when/if needed. I see him weekly or more in summer, but sporadically in winter. Thanks everyone...

[Dawg52]

Saw on the CBS evening news today that there is an experimental drug that appears to be working well for some in the study. Too bad some of these drugs are not further along in their trials.

Best of luck to your friend.

[Nords]

Quote:

Originally Posted by Midpack He seems the same as always, a little forgetful (though seemingly no more than the rest of us older dudes), and for a while now he gets flustered talking sometimes and says 'you know I have short-term memory loss.' He's said it several times, but I never thought anything of it, and I hadn't heard about the diagnosis then (he may not have either). Not sure what triggered the diagnosis. Guess all I can do is treat him as normal and watch for changes in behavior, and be there when/if needed. I see him weekly or more in summer, but sporadically in winter. Thanks everyone...

I think the first couple years are far worse for family/friends. Eventually everyone accepts the diagnosis and makes the best of it, but those first couple years are full of mistakes and false hopes.

If the diagnosis is confirmed then your friend may be able to slow the rate of cognitive decline with Aricept & Namenda. Dementia can also be exacerbated by a vitamin B12 deficiency and an underactive thyroid. So every day of denial is costing them their cognition.

The two best books I've seen are:
1. Thomas DeBaggio's "Losing My Mind". He was also diagnosed with early-onset Alzheimer's and wrote not one but two books.
2. "The 36-Hour Day" for patients & caregivers: Book report: “The 36-Hour Day” | Military Retirement & Financial Independence

The best website, hands down and by far, is Bob DeMarco's Alzheimer's Reading Room.
Dealing with Mood, Cooperation, and Behavioral Problems | Alzheimer's Reading Room

I'd recommend signing up for their RSS feed, because you just can't stand to read more than 30-60 minutes at a time. It's packed with caregiver advice, support from other caregivers, Bob's advice on what worked with his mother (he has a lot of good advice), the latest medical false hopes research, and press releases on national policy. Bob claims that when you're with someone who's dealing with Alzheimer's, you have to stop thinking with normal cognition and put yourself in "Alzheimer's world". It's given me a lot of great hints for visiting with my Dad.

[web_diva]

See article below. Suggest putting this in your friend's hands.
In the Land of Oz: The Latest Attack on Coconut Oil - Weston A Price Foundation

[tmm99]

Sorry to hear about your friend. I cannot imagine what the wife is going through.

Diva,

The coconut oil article is quite interesting.

[Midpack]

Thanks for the additional suggestions. As I mentioned, while we don't officially "know" we can't do much to stem the denial or anything else. I am sure his wife is trying to get him to face the challenge, and obviously he will, hopefully sooner rather than later. While the latest Alzheimer drug findings in the media won't help, maybe it will get him to open up. For now, I can only act normal and watch for signs, though I may see if his wife opens up next time I see her (unfortunately not as often as him).

[antmary]

I am sorry to hear about your friend. I agree that the wife needs lots of support. It is imperative for her that legal papers are in order. Other than that, spending quality time with your friend will really take the pressure off the wife.

I spent time with my MIL when she was alive, coping with Alzheimers. I can't stress enough how much that helped my FIL to cope. For him, time alone or just running errands was golden.

[jclarksnakes]

Whenever I hear about an Alzheimers diagnosis I am skeptical. When I was working in the hospital we often had confused patients who had been diagnosed with Alzheimers but I think with many of them it was just a guess. A good friend's wife (she is in late 50s) was recently diagnosed with it and seemed to be declining rapidly. It turned out that instead of Alzheimers it was a reaction to a couple of her new medications. She is now doing very well on different medications. The clue that all the medical types including myself missed was that she had gone from seemingly okay to very confused in a matter of weeks.

[rgarling]

Assuming your friend wants to take corrective action, use the framework suggested by this recent theory:

The Clue to Why Low Fat Diet and Statins may Cause Alzheimer

...it can be hypothesized that insufficient fat and cholesterol in the brain play a critical role in the disease process. In a remarkable recent study, it was found that Alzheimer’s patients have only 1/6 of the concentration of free fatty acids in the cerebrospinal fluid compared to individuals without Alzheimer’s. In parallel, it is becoming very clear that cholesterol is pervasive in the brain, and that it plays a critical role both in nerve transport in the synapse and in maintaining the health of the myelin sheath coating nerve fibers. An extremely high-fat (ketogenic) diet has been found to improve cognitive ability in Alzheimer’s patients.

[Michael108]

Quote:

Originally Posted by Midpack Just learned this weekend that a 57 yo friend has been diagnosed with early onset Alzheimer's, he's a year younger than me (yikes). He is still working, no thought of retiring... Been trying to read up on what a friend can/should do in support, but most everything that Google has turned up seems geared toward the patient (understandably). What I did read seemed bleaker than I expected for the "early onset" variety, and another friend told me he had a college buddy who went from running a large Allstate branch to diapers in about 2 years at age 57. Any experience and counsel on what I can do as a friend?

Very scary. For eventual suggestions you might offer your friend when the ti me is right, I would suggest looking over the www.anatabloc.com site Which is the site for relatively new supplement called anatabloc. Basically works as an anti-inflammation agent. Research from Roskamp Institute also worth looking at. Disclaimer: I own shares in the company that makes anatabloc...and also have been taking it for some time with impressive results.

[Notmuchlonger]

Very sad to watch a loved one go though this. My Mil is going through this. At times everything is fine. Then at other times it's really noticeable. However, she is in her 80's. I can't imagine at 57