What Alzheimer’s Feels Like from the Inside | Hacker News Reader

What Alzheimer’s Feels Like from the Inside

nautil.us

115 pointsdnetesn32 comments

This is a great, but very short, account of what some people with dementia illnesses go through.

There are some things that didn't get mentioned: stuff like how to you talk to your family about DNR and other advanced directives? When do you stop driving? When do you hand over control of your money to someone else? A lot of advanced directives will say something like "no heroic measures". Doctors hate that, because it doesn't give them nearly enough information to make a decision about care. Giving more detail is important. They may not be able to obey your instructions, but they need to consider them and have a good reason for ignoring them.

It's a really good idea to have those conversations now and get some kind of plan in place because at the time it's going to be tough enough for everyone anyway.

Here's a description of some advice from an English perspective: http://www.gloucestershireccg.nhs.uk/gloucestershires-dement...

A close family member of mine was diagnosed with Alzheimer's last year. He's still doing well, he remembers who everyone is, but it's hard discussing even simple strings of logic with him. He just gets lost and we have to double-back to review the thing we discussed 30 seconds ago. My mom related a story about having lunch with him, where he had both a bun and a brat on his plate, but just sat staring at them trying to figure out what the proper thing to do with them was. I'm afraid to see what happens as it advances.

Articles like these are nice to read. I don't find it a comfortable subject to talk about with my relatives, and especially with him. But hearing it from the perspective of a sufferer helps me understand what's happening and how to act around him.

This is one of my core fears.

I know now that it is very likely I will live well into my 80s, perhaps even 90s. My genetic background strongly indicate a long life span, and I have been taking pretty good care of my body for a long time.

So there is an excellent chance that my body will outlast my mind.

And that just sucks. In my remaining decades, I hope that science and technology will address this. There seems like a good chance of real progress in that timeline.

If that worries you so much, you could treat your body more riskily to even the odds.

I'd be worried about general rough-lifestyle stuff affecting your brain's health as well. It is ultimately also a physical organ. Also, being unhealthy is not pleasant in general for many people.

Another approach might be to just slowly increase enjoyable risky behavior that's more or less all or nothing in its bad effects: driving fast, base jumping, motorcycle riding, helicopter piloting...

Indeed - my mother is entering the advanced stages of the disease, and it started to be quite noticeable in her late 60s. I don't even plan on having retired by then! Both of her parents had the disease, so I figure I have at least a 50% chance, likely greater. The video mentioned that you would need to start treating the amyloid plaques at least a decade before symptoms start. When the kids are a little older, I plan on entering a longer-term study or drug trial well before I have any signs of the disease, there are several currently going on. Regardless of whether I ultimately would acquire it without any treatment, I have a very keen interest in helping further research on the disease. It is not a pretty thing for the individual or their family to go through, in my mom's case it's been nearly a decade of gradual but steady decline, with my dad in his mid-70s as her primary caretaker. In another 10 years, there will be a huge upsurge of baby boomers in a similar situation.

Alzheimer's is the most common form of dementia, and dementia is on the rise. So the chances are that most people reading this, not just you Diederich, have some form of dementia in their future. Your family history of old age doesn't include or exclude you, particularly. So you're not unusual, and you're not alone :)

What can we do in the face of this horrible onslaught? Not much, but great journeys start with small steps. Donate to dementia research charities. Become an Alzheimer's friend, if you have such a thing. Volunteer in a care home, perhaps. Talk about dementia with your friends. Write to your local politician. Read about your government's policies.

Just don't do nothing.

Incidentally, I recommend reading Atul Gawande's Being Mortal. Not necessarily for answers, perhaps as an exhortation that we can handle things better.

If it helps, your own lifespan is quite weakly correlated with that of your parents (no good citation offhand, but I've read it before..here is one source: https://www.sharecare.com/health/longevity/how-parents-lifes...).

Of course, living into your 80s is not at all uncommon today.

Probably one of the worst disease for family and closest ones. You see someone you know and love be more and more a stranger to you and a stranger to themselves.

I'd strongly recommend the novel "Still Alice" by Lisa Genova. A very sad but accurate portrait of Alzheimer's:

http://www.amazon.com/Still-Alice-Lisa-Genova/dp/1501106422/...

http://www.imdb.com/title/tt3316960/ (2014) 7.5/10

http://www.rottentomatoes.com/m/still_alice/ 88%

Someone I know died from Alzheimer after suffering like 4.5 years. To me, this is one of the most horrific diseases to die from. It gives a great deal of suffering to people around you as well. I remember recently reading about a link between Alzheimer disease and fungal infection in brain but I guess it was just another false hope.

My grandfather passed from Alzheimers this summer. It is awful to say, but his passing was a relief to many, as he effectively died a couple years prior.

This disease is proof positive that there are medical fates far, far worse than death.

As someone about to go through this with a close relative, and with a chronic illness myself (type 1 diabetes), I often think of euthanasia. I haven't come to any conclusions yet.

Active euthanasia (stuff beyond DNR) for mental conditions is a non-starter because it is impossible to get a valid statement of the patient's preferences.

You can't write a valid living will that says "kill me if I forget who my wife is twice a day for a week".

It's a difficult problem, to be sure. I feel like what sokoloff went through is maybe not the optimal solution. I don't know.

What I went through was vanishingly small compared to my grandmother and father. It cemented in my dad a resolve to self-euthanize at the first sign of a progressive mental degradation. Of course, the first sign is "too early" to be optimal as well, but no one wants to wait until it's too late. In a strange twist of fate, he experienced this fall a temporary but rapid decline in function due to a treatable (and subsequently treated) physical condition that manifested itself over a 10 day period. Now recovered, I'm sure he's glad he didn't off himself.

I don't have any easy answer, even having had these experiences. There's little question my grandfather would not have wanted to live as he did the last 18 months of his life, but still epsilon chance he prefered whatever his life was to nothingness and even if not, was 17 or 19 a "more right" answer? How do you distinguish "routine" "what did I come downstairs for again?!" from more serious progressive degenerative diseases? Who knows...

I lost my Grandmother in November and though she was never diagnosed with Alzheimer's, she did experience a long, sad cognitive decline. Seeing someone who was once so feisty not quite remember to change her Brita water filter was very difficult on my entire family.

Needless to say, I understand what you mean by your grandfather's passing being a relief to many. Good on you for having the courage to write that - it is a very common thing that far too many people are afraid to express.

I am sorry for your loss.

The fungus thing is still extremely preliminary. The cause of Alzheimer's is not known.

I've seen articles that refer to it as "type 3 diabetes" or at least link it to diabetes.

Also preliminary. There are a number of hypotheses. The real answer could be one of them, or a combination of them, or something we haven't thought of yet. We simply don't know.

The problem is, it's hard to diagnose early stage Alzheimer's and it's hard to look inside the brain of a living person and see what's going on. Combine those two things and there is just so so much we don't know about the disease.

I know it's all over the place even cold sore virus I've heard is a risk.

There is diabetes on both sides of my family (I'm not diabetic) and I get cold sores too but nobody on either side of my family has or ever had Alzheimer's Disease.

My in-law were dealing with the grandmothers Alzhiemers for 4-5 years. Basically stuck in their house for the whole time to take care of her. No travel or vacations. None of their sibblings wanted to help and they just disappeared once the duties were passed to them. No public support structure for this illness in their country even.

Title is probably a reference to http://lesswrong.com/lw/no/how_an_algorithm_feels_from_insid... (unless it in turn is a play on another title).

The spider-like hallucinations are classic alcohol-withdrawl symptoms not directly associated with dementia or alzheimer's.

This story is on a number of sites, so it comes up in google searches, as the same report from the same guy.

Hallucinations are a part of dementia for some people. Tactile hallucinations can be present in Alzheimer's.

https://www.alzheimers.org.uk/site/scripts/documents_info.ph...

> People with dementia are often thought to be hallucinating when in fact they are making a mistake about what they have seen (see 'Visuoperceptual mistakes' above). There are some specific forms of dementia, however, where hallucinations are more common. These include dementia with Lewy bodies and Parkinson's disease dementia. Hallucinations can also occur in Alzheimer's disease.

> Hallucinations in people with dementia with Lewy bodies usually take the form of brightly coloured people or animals. They often last for several minutes and can occur on a daily basis. Around one in 10 people with dementia with Lewy bodies also experience smells that are not really there (known as olfactory hallucinations). People with dementia may also experience auditory hallucinations (hearing sounds or voices) and tactile hallucinations (sensing things that aren't there).

This was the first Google result for [dementia hallucinations], although I guess my filter bubble has been heavily trained.

Hallucinations are a common symptom of dementia, but not the type he described. The type he described are particularly common for another condition.

This is what you said:

> The spider-like hallucinations are classic alcohol-withdrawl symptoms not directly associated with dementia or alzheimer's.

You said "not directly associated with alzheimer's".

That's incorrect. Some, but not most, people with alzheimer's experience tactile hallucinations.

Here's another cite:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105559/

> Alzheimer's disease

> The prevalence rates of hallucinations in Alzheimer's disease (AD) range from 12 to 53%. Hallucinations in AD most often are visual, although auditory, tactile and olfactory hallucinations have also been observed. Hallucinations are most prevalent in the moderate to severe stages of the illness and do not seem to occur at the end stage of the disorder.

These kind of hallucinations are not uncommon with NMDA receptor antagonists like DXM, might well be that receptor damage can cause similar symptoms.

I've heard there is a variety of emotional responses by the patient.

Some are frustrated by former simple things becoming too hard to do.

Some are angry at themselves for failing. Or angry at others who think others are playing tricks on them.

Some of the excess emotion may come from the degeneration progressing at different rates in different parts of the brain. Especially if the frontal lobes lose their inhibitory powers.

Some report a sense of peace. Life is simpler and more basic.

This story reminds me of a heartbreaking NPR piece I heard about a decade ago.

A man learned he had inoperable brain cancer/tumor (I think), so he began taking daily audio journals. His widow released some of the recordings to be played in the piece, and they illustrated his mental decline over time.

It was a very touching and sad story, and I've had a fear of a similar fate ever since.

As someone put it. I never knew, you die one piece at a time.

This disease scares me. Dying, head first like that. Its common enough that it will probably happen to you or a loved one. Its easier not to think about.

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