# Alzheimer's, Dementia: What Would You Do? **URL:** \ **Category:** In My Humble Opinion\ **Created:** [December 18, 2005, 10:28am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152 "2005-12-18T10:28:22Z")\ **Posts on this page:** 18\ **Page:** 2
**Author:** ![Silentgoldfish](https://avatars.discourse-cdn.com/v4/letter/s/e36b37/32.png) [@Silentgoldfish](https://boards.straightdope.com/u/Silentgoldfish)\ **Post date:** [December 19, 2005, 4:41am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/21 "2005-12-19T04:41:19Z")
> [@elfkin477](#): > > What’s frightening beyond belief is the fact that scientists want to increase longevity, knowing that 50% of people who live to 85 are going to get Alzheimer’s. It’s the “just because you can, doesn’t mean you should” example. It’s not that bad, more like 1 in 4, and it’s not all Alzheimers ([cite](http://www.mhcs.health.nsw.gov.au/health-public-affairs/mhcs/publications/5340.html)) . Now, that’s not great either, but not as grim as you’re predicting. There’s quite a few people that fall into that spectrum that are pleasantly demented – that is, they’re confused, aware of it, and not all that fussed. That doesn’t seem to be a bad way to end your life (and I’ve seen lots of it first hand so I know of what I speak). ---
**Author:** ![StGermain](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/stgermain/32/2868_2.png) [@StGermain](https://boards.straightdope.com/u/StGermain)\ **Post date:** [December 19, 2005, 5:05am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/22 "2005-12-19T05:05:13Z")
I read an interesting book: [Aging With Grace : What the Nun Study Teaches Us About Leading Longer, Healthier, and More Meaningful Lives](http://www.amazon.com/gp/product/0553380923/qid=1134967524/sr=8-1/ref=pd_bbs_1/102-4646805-5005720?n=507846&s=books&v=glance) This is the Publisher’s Weekly blurb: > [@](#): > > Since 1986, the author, an epidemiologist, has directed a research project dubbed the Nun Study. According to Snowdon, who previously studied Seventh-Day Adventists, religious group members make ideal subjects because of their similar and somewhat insular lives. Specifically, he has been tracking the lives of 678 elderly nuns who are members of the School Sisters of Notre Dame, to assess the effects of aging. Snowdon describes in detail a pilot study he conducted with the sisters in Mankato, Wis., on the link between level of education and disabilities related to aging. This initial research convinced him to expand his base to other convents and to focus primarily on Alzheimer’s disease. The participants, ranging in age from 75 to 104, agreed to provide access to their medical and personal histories and, after death, to donate their brain tissue to the project. What distinguishes this study is Snowdon’s decision not to maintain the usual “objective” distance from his subjects but rather to become emotionally involved with them. His commitment to treat them with “care and respect” is readily apparent in the many warm and sympathetic anecdotes and his expression of deeply felt grief when any of the sisters becomes incapacitated by Alzheimer’s or dies. Among the project’s findings is a clear correlation between a low rate of Alzheimer’s and high linguistic ability. Snowdon has also found a positive relationship between the consumption of certain antioxidants (e.g., lycopene, found in pink grapefruit, tomatoes and watermelon), an exercise program and an optimistic outlook and aging successfully. Although the study is still under way, readers will certainly appreciate the early insights to be gleaned from Snowdon’s human- (rather than statistic-) centered and compassionate story. It’s very interesting how you could predict in many cases which nuns would get AD just by reading the essays they wrote when they were 18-20 years old and entering the convent. Important too was a life-long commitment to continuing education. Those nuns who were often still taking college courses in their 70’s didn’t develop AD. My grandmother died of AD. My uncle cared for her until her death. It was a horrible way to die. I couldn’t commit suicide, but I’d much rather be cared for by hired help rather than have my family experience my degradation. StG ---
**Author:** ![OtakuLoki](https://avatars.discourse-cdn.com/v4/letter/o/ac8455/32.png) [@OtakuLoki](https://boards.straightdope.com/u/OtakuLoki)\ **Post date:** [December 19, 2005, 5:09am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/23 "2005-12-19T05:09:37Z")
One reason that I couldn’t do assisted suicide is that as long as I had the mental capacity to make the decision - I wouldn’t see the need. And once I’d gotten to the point where it would make sense to me, now, I don’t think I’d be fit to make that kind of decision. (Of course I’ve got no problem with saying, with dark humor, that things like radiation, stress, obesity, and fatty foods are good for one, because they all prevent Alzheimer’s…) ---
**Author:** ![elfkin477](https://avatars.discourse-cdn.com/v4/letter/e/a9a28c/32.png) [@elfkin477](https://boards.straightdope.com/u/elfkin477)\ **Post date:** [December 19, 2005, 5:28am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/24 "2005-12-19T05:28:50Z")
> [@Silentgoldfish](#): > > It’s not that bad, more like 1 in 4, and it’s not all Alzheimers ([cite](http://www.mhcs.health.nsw.gov.au/health-public-affairs/mhcs/publications/5340.html)) . Now, that’s not great either, but not as grim as you’re predicting… 1 in 4 is the figure _usually_ given for over 65, not 85 (with people age 65 only having 1 in 10 odds of getting it). Here’s a whole bunch of websites that agree that it’s about 50% over age 85: > **[Dementia - Symptoms and causes](https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013)** [http://www.fda.gov/fdac/features/2003/403\_alz.html](http://www.fda.gov/fdac/features/2003/403_alz.html) [http://www.alz.org/maintainyourbrain/overview.asp](http://www.alz.org/maintainyourbrain/overview.asp) > **[AARP The Magazine - Feel Great. Save Money. Have Fun.](https://www.aarp.org/magazine/)** > > AARP The Magazine—the world's largest-circulation magazine, with more than 47 million readers—helps people 50+ live their most fulfilling lives. [http://www.alzoc.org/thedisease/Statistics.htm](http://www.alzoc.org/thedisease/Statistics.htm) [http://www.efmoody.com/longterm/alzheimers.html](http://www.efmoody.com/longterm/alzheimers.html) [http://www.therubins.com/alzheim/alzheim7.htm](http://www.therubins.com/alzheim/alzheim7.htm) [http://www.alzoc.org/thedisease/Statistics.htm](http://www.alzoc.org/thedisease/Statistics.htm) [http://www.longtermcareins.info/id17.html](http://www.longtermcareins.info/id17.html) and 1.2 million other cites for “Alzheimers 50% over 85” So yes, unless you think the FDA, the Mayo Clinic, AARP and several AZ associations are all lying, the picture is as grim as I painted it. ---
**Author:** ![cwthree](https://avatars.discourse-cdn.com/v4/letter/c/9de0a6/32.png) [@cwthree](https://boards.straightdope.com/u/cwthree)\ **Post date:** [December 19, 2005, 6:32am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/25 "2005-12-19T06:32:00Z")
> [@DMark](#): > > 1. If you were diagnosed, what would you do as long as you were still coherent? Suicide, unquestionably. Specifically, I would keep the diagnosis to myself, since I believe several family members would anticipate my response and try to “save” me. I’d set myself some milestones or tests such that I’d be able to know when I’d crossed the line from “apparently fully functional” to “functioning but not reliably coherent.” My understanding is that early on, one is quite aware of what’s happening. I’m told that this is one of the most horrible things about the disease, knowing what’s happening and knowing there’s nothing you can do about it. > [@DMark](#): > > 1. If your spouse were diagnosed, what would you do? Drawing a total blank here. This is not good, since I understand there’s a hereditary component to AD and one of cwPartner’s near relatives has AD (see answer #3). > [@DMark](#): > > 1. If you have personal experience, what can one expect and how does one cope? A family member (we’ll call her “Pearl”) was diagnosed a few years ago. It’s very, very important to understand - and to make sure the patient’s \*doctor \* understands - that people with AD are still prone to other physical and mental illness. AD can’t be used as a catch-all diagnosis for every symptom or complaint. In Pearl’s case, her cognitive difficulties were exacerbated by medication (Aricept). Her mental acuity improved when she stopped taking it (the hallucinations stopped, too). Pearl also had a number of small strokes, the effects of which were initially dismissed as symptoms of AD. This is a problem because it caused the doctor to pronounce her AD much more advanced than it actually is. Once they understood which problems were actually caused by the strokes, they were much better able to accomodate her needs and to predict how they might change. Stroke-related symptoms won’t get better, but they can expect them not to progress in the same way that AD-related symptoms will. Finally, Pearl had some problems with depression following the diagnosis (not surprising). Antidepressants have helped considerably. Don’t dismiss depression as just another symptom of AD. ---
**Author:** ![Silentgoldfish](https://avatars.discourse-cdn.com/v4/letter/s/e36b37/32.png) [@Silentgoldfish](https://boards.straightdope.com/u/Silentgoldfish)\ **Post date:** [December 19, 2005, 12:48pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/26 "2005-12-19T12:48:41Z")
> [@elfkin477](#): > > So yes, unless you think the FDA, the Mayo Clinic, AARP and several AZ associations are all lying, the picture is as grim as I painted it. I’m not saying they’re lying (though way to straw-man) but all the cites of yours I read are very generalistic about it and the peer-reviewed articles I’m finding are all over the place – some say it’s closer to a quarter, some say half. I wish I knew how to link to them but I’m not sure how, I’m using my university login to browse medical journals. ---
**Author:** ![LurkMeister](https://avatars.discourse-cdn.com/v4/letter/l/3da27b/32.png) [@LurkMeister](https://boards.straightdope.com/u/LurkMeister)\ **Post date:** [December 19, 2005, 2:15pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/27 "2005-12-19T14:15:46Z")
I went through this two years ago with my wife - Parkinson’s-related dementia. I posted several threads in MSISMP & BBQ in 2003 (which I am not going to search for because I don’t think I could stand to read them again) about what it was like. Suffice to say that my family knows that if I ever start showing similar symptoms I expect them to do everything they can to see that I never reach the state my wife was at near the end. Which leads me to one point which I do not believe has been addressed in this thread. Prepare a living will & medical power of attorney NOW. Find a relative or friend who can be trusted to abide by your wishes and give them the authority to act if you are unable to. This would avoid the situation referred to by **cwthree** regarding family members trying to “save” you if you wish to go with assisted suicide or termination of medical assistance. ---
**Author:** ![kiz](https://avatars.discourse-cdn.com/v4/letter/k/7feea3/32.png) [@kiz](https://boards.straightdope.com/u/kiz)\ **Post date:** [December 19, 2005, 4:17pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/28 "2005-12-19T16:17:48Z")
Dang, I’d written a rather lengthy reply to **clairobscur** ’s question earlier, but it was obviously eaten as I don’t see it here _looks around_ I can’t cite anything specific at the moment, but I remember reading somewhere that most ALZ patients have an inkling something’s “wrong”, primarily in the early stages before any official diagnosis. Whether s/he admits or not is another story. Both my mom and my uncle – her younger brother – vehemently denied anything was wrong ( a typical reaction in the early stages) even after both bungled several everyday incidents. Mom’s way of finally admitting somethng was wrong – again, pre-diagnosis – was refusing to drive after getting lost while driving to a friend’s house located less than 2 miles from us. **LurkMeister** ’s absolutely correct – prepare a living will and DPOA \now\ while you’re fully cognizant. If your LO haven’t done either, please discuss both with him/her while s/he’s still legally cognizant. I know of two instances where neither was done, and the results for the familes involved were disasterous, to say the least. ---
**Author:** ![Kitchen\_Wench](https://avatars.discourse-cdn.com/v4/letter/k/f08c70/32.png) [@Kitchen\_Wench](https://boards.straightdope.com/u/Kitchen_Wench)\ **Post date:** [December 19, 2005, 5:17pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/29 "2005-12-19T17:17:26Z")
> [@kiz](#): > > I can’t cite anything specific at the moment, but I remember reading somewhere that most ALZ patients have an inkling something’s “wrong”, primarily in the early stages before any official diagnosis. **Whether s/he admits or not is another story.** This is the worst part of having to deal with my grandmother’s dementia. She lived alone in her own home until earlier this year. That’s when things got so bad that she HAD to be moved. She still can’t understand why we took her away from her home. Now she hates me. Just a couple weeks ago, she was telling the nurse’s assistant that I am “a trouble maker” and that “she’d get me back.” It’s hard enough seeing someone you love go through this. It’s much worse when they can’t or won’t see they have a problem & they think you’re just “trying to get rid of them.” It’s frustrating. It pisses me off. And it breaks my fucking heart that she would think that of me. I know she wouldn’t say such things if she weren’t sick. But still, it’s like a knife to my heart. ---
**Author:** ![Spectre\_of\_Pithecanthropus](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/spectre_of_pithecanthropus/32/12343_2.png) [@Spectre\_of\_Pithecanthropus](https://boards.straightdope.com/u/Spectre_of_Pithecanthropus)\ **Post date:** [December 19, 2005, 8:13pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/30 "2005-12-19T20:13:29Z")
> [@Silentgoldfish](#): > > There’s quite a few people that fall into that spectrum that are pleasantly demented – that is, they’re confused, aware of it, and not all that fussed. That doesn’t seem to be a bad way to end your life (and I’ve seen lots of it first hand so I know of what I speak). I can’t say that losing any degree of mental acuity and cognitive function would be pleasant, but I know what you mean. My maternal grandmother and mother both, after passing a certain age, became careless in regard to certain minor things. For instance, they both sometimes addressed me by my brother’s name, presumably since most of the males in my family have that name. But they weren’t confusing me with him or anything like that. Oddly enough my mother started doing this within a week or so after losing her mother. ---
**Author:** ![OtakuLoki](https://avatars.discourse-cdn.com/v4/letter/o/ac8455/32.png) [@OtakuLoki](https://boards.straightdope.com/u/OtakuLoki)\ **Post date:** [December 19, 2005, 8:53pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/31 "2005-12-19T20:53:00Z")
One word of further advice about the various people talking about getting DPOA, Living Wills, etc - it’s absolutely vital that you discuss with your family members clearly about what you want done. I don’t know of any circumstances where a DPOA or Living Will was broken by a family that didn’t approve of the choice, or had been surprised by it - I’ve heard a lot of stories about families having organ donor status changed because they knew their loved one “didn’t really mean that.” ---
**Author:** ![clairobscur](https://avatars.discourse-cdn.com/v4/letter/c/839c29/32.png) [@clairobscur](https://boards.straightdope.com/u/clairobscur)\ **Post date:** [December 20, 2005, 12:31am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/32 "2005-12-20T00:31:57Z")
> [@Duke of Rat](#): > > She was certainly lucid enough (to commit suicide) early on, she was able to get her affairs in order before she progressed too far. That’s (sort of) comforting… At least you know where you’re headed to and can plan accordingly. ---
**Author:** ![clairobscur](https://avatars.discourse-cdn.com/v4/letter/c/839c29/32.png) [@clairobscur](https://boards.straightdope.com/u/clairobscur)\ **Post date:** [December 20, 2005, 12:39am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/33 "2005-12-20T00:39:30Z")
> [@cwthree](#): > > I’d set myself some milestones or tests such that I’d be able to know when I’d crossed the line from “apparently fully functional” to “functioning but not reliably coherent.”. What kind of milestones/tests, if I may ask? ---
**Author:** ![cwthree](https://avatars.discourse-cdn.com/v4/letter/c/9de0a6/32.png) [@cwthree](https://boards.straightdope.com/u/cwthree)\ **Post date:** [December 20, 2005, 1:42am UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/34 "2005-12-20T01:42:26Z")
> [@clairobscur](#): > > What kind of milestones/tests, if I may ask? Good question. It would have to be something that I could lay out objectively while still quite competent, and which I could evaluate reliably while less competent. I think I would start with a list of common, everyday tasks - the kind of thing that everyone screws up sometimes, but not on anything like a regular basis - and simply keep a running tally of the number of times I screwed up. I’d have to decide at the outset what the cutoff is - how many times a day/week/month I’d have to do something like that before I accepted that I was becoming incompetent. I’m thinking of things like leaving dentures in the coffee pot, or getting lost on a familiar route (both mentioned in this thread). I’ve done things like that, but I don’t do them frequently. I probably lose my keys really good (as in running-around-the-house-dumping-my-briefcase-emptying-my-pockets lost) once every couple of months. If that started happening every week or so, I’d know that something was seriously wrong. I probably put food, etc., away inappropriately (or not at all) about as often. If it happened more frequently it would be a pretty good indication that something about me had changed. It would be a little bit like self-evaluating for depression. A common symptom of depression is a loss of interest in things that one previously enjoyed. For instance, my home includes several “toys” that I own because I because I enjoy using them. If they’re lying around unused (and I’m not extraordinarily busy at work) I know something’s wrong. Likewise, I know how to use everything in my house. If I were to find myself looking at one of my tools and wondering what it’s for, I’d know something was wrong. ---
**Author:** ![panache45](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/panache45/32/64_2.png) [@panache45](https://boards.straightdope.com/u/panache45)\ **Post date:** [December 20, 2005, 3:08pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/35 "2005-12-20T15:08:27Z")
My father had Alzheimer’s, and put my mother through hell before he died, taking a tremendous toll on her own health. There’s a very real chance I might get it, as it runs in the family. That is, if the other inherited diseases don’t get me first. I just turned 60, with my fingers crossed. If I’m ever diagnosed, I’ll just enjoy life as long as I can (totally using up my savings and investments), then give away my belongings, then suicide at the appropriate time. To prolong my life beyond that would be pointless and cruel. ---
**Author:** ![hlanelee](https://avatars.discourse-cdn.com/v4/letter/h/3bc359/32.png) [@hlanelee](https://boards.straightdope.com/u/hlanelee)\ **Post date:** [December 20, 2005, 3:37pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/36 "2005-12-20T15:37:38Z")
I had a closed head injury in 1995 and it was two years before I had the mental capacity or the motor skills to exist as an individual again. If I had had the ability then, I would have killed myself. The people around me prevented this. I remember that the first thing I realized when I was brought home from the hospital was the fact that all of my guns were gone. I could not describe the hell it was to not be able to depend on my own mental capacities. I have recovered from the head injury now and do real well. If I know that I am going to lose my mind again I am prepared to kill myself. ---
**Author:** ![irishgirl](https://avatars.discourse-cdn.com/v4/letter/i/8edcca/32.png) [@irishgirl](https://boards.straightdope.com/u/irishgirl)\ **Post date:** [December 20, 2005, 4:04pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/37 "2005-12-20T16:04:36Z")
1. Write a Living Will- no antibiotics, no PEG tubes, no medications other than sedatives and analgaesia, no surgery, no CPR. Organise care, cash in the health insurance, put my affairs in order and try to stay at home as long as possible. Suicide is not an option. 2. Have him do the same- we’ve talked about this sort of stuff, he wants me to make his healthcare decisions for him, so I’ll organise for him to have a similar Living Will. 3. No personal experience, although my 90 y/o grandmother is losing some of her faculties due to vascular dementia, she’s also got atrial fibrillation, has angina and has had some TIAs. She lives with my folks, refuses to see a doctor or take medication and has requested that if she should collapse with a major stroke we call the priest, not the ambulance. It’s what I’d want for myself, to be cared for by family for as along as possible and not to have any unnecessary efforts made to prolong my life. I’ve seen elderly people who can’t even say their own name any longer or recognise anything around them, being sedated in order to have the PEG tube that is feeding them re-inserted after they have pulled it out. Most often this is because their family would feel far too guilty if they let granny “starve to death”, even though granny probably wouldn’t suffer and studies have shown that the PEG doesn’t extand life. ---
**Author:** ![Left\_Hand\_of\_Dorkness](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/left_hand_of_dorkness/32/7156_2.png) [@Left\_Hand\_of\_Dorkness](https://boards.straightdope.com/u/Left_Hand_of_Dorkness)\ **Post date:** [December 20, 2005, 4:06pm UTC](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152/38 "2005-12-20T16:06:32Z")
In theory, if I ever get diagnosed, I’m going to enjoy life-threatening activities: skydiving, hard drugs, and the like. If I die during one of those experiences, well, that’d kinda be my goal. I’d kinda like to go out by jumping from a plane into the ocean: instant death following a helluva spectacular fall, and no body-disposal problem. But I don’t know where I’d find the pilot. Daniel [Previous page](https://boards.straightdope.com/t/alzheimers-dementia-what-would-you-do/336152.md?page=1)