Aspects of several current threads have prompted me to start this discussion-- There's a general, anecdotal school of thought that younger onset AD people deteriorate more rapidly than older people. As far as I can tell from medical and Googled sources, there's no hard data to back this belief up, yet it seems to be a common assumption.
I would argue with it here, on the grounds that many of us here are complaining(? everyone here knows what I mean...) that our youngish spouses are NOT progressing rapidly, and we ARE the spouses of young-onset patients, and we're not seeing any sort of hasty degeneration. In fact, we fear (? again, you all know what I mean) that we're going to be doing the spousal caregiving thing for 20+ years.
So, where does the idea that young-onset=speedy decline come from? I surmise that, possibly, AD patients who acquire their illness by direct genetic legacy (i.e. those with familial AD,) MAY degenerate more rapidly. Possibly, when the disease is mandated by a very specific allele, as in familial AD, there is a more standard rapid course of decline.
OTOH, for people whose acquisition of the disease comes from unknown causes (environmental toxins, loose genetic proclivity, a blow to the head, etc...who knows?) perhaps the progression of the disease varies according to the factor(s) which caused it, and the severity of the factor which caused it. (In addition, possibly, there may be a resistance to the effects which maybe those with familial can't muster.)
That's one of the many buggers of this disease. Multiple causes, most not understood. Often with other terminal illnesses "they" can give you a pretty accurate estimate of how much time you have left, and with this one...they cannot. Knowing at least gives us the chance to face it, deal with it, know what we have to get in order. But we don't get to know. So part of our psychological strength-building is making peace with the inevitable but utterly unknowable.
Forgive me for not being scientific here, but from what I have read and seen first hand, those who have a particular type of Early Onset Alzheimer's Disease that is related to a specific Early Onset gene, are hit hard and fast, and deteriorate very rapidly. Our member Tony's wife, Tracy, was 38 or 39 at diagnosis, and died at 42. However, as with everything related to this disease, there are exceptions.
Sid is considered Early Onset because he started showing symptoms at 58, and was finally diagnosed at 63. It has been a very slow decline, plateau, decline, plateau.
The brain is so complex, as is this disease, that there is no way to predict. As the saying goes, "If you've seen ONE Alzheimer's patient, you've seen ONE Alzheimer's patient.
Emily--From what I've read, those with EFAD (Early Familial Alzheimer Disease) do deteriorate rapidly, as Joan said above. Others without the EFAD gene, whether dx before or after 65, progress more slowly (in general). My husband's Dad was dx in his 40's, so when DH was dx at 60, I was concerned that it was EFAD. However, as time went by, his neuro said it doesn't appear to be EFAD (based on the slow progression). So I guess this would support the theory that the rate of progression is probably influenced by the individual's genetic makeup. I have also been told that environmental factors such as attending an adult day program providing cognitive stimulation and good caregiving (perhaps providing an environment that reduces the patient's stress?) can also extend lifespan. And yes, the difficulty of predicting how long someone may live with this disease certainly makes planning for the future more difficult.
I remember all too well the question and the quandary of having an early onset DH (symptoms started at around 44, but he wasn't diagnosed until 51). I had no idea, like all of us, how long he would be here and the thought of 20 years was unthinkable. My DH's disease seemed slower in the time leading up to the last 18 months or so and really accelerated in the last 9 months to the point where there was literally a daily decline that was measurable, quantifiable, and objective. Even then, I had no idea how long he would last because this journey is like being on a roller coaster ride that we know will end in the death of our beloved but we don't know where the bottom is or just how far down it is going to go before the moment of death arrives. Another apt description of the experience is like traveling through the mountains in a car where you cannot see where you are going because the mountains are so big and, although you see signs saying you are headed toward the destination, none of the signs come with a mile marker nor do they tell you how far it is to the destination. Instead, its just "yep ... this is the road you are on" and the road is pitted with huge potholes with sprinkles of sunshine. I know the agony of the powerful twin forces grinding at your soul - the one twin doesn't want to lose the beloved (even though the beloved is not the same person) and the other twin cannot imagine watching this horror FOREVER, which 20 years would pretty much feel like.
I don't know how long your journey will be, but know there are others who have gone before you (like me) and the road was not nearly as long as I feared and my DH's death was not nearly as crushing or devastating as I imagined it would be.
I saw somewhere (here or another site) where the question was asked what happens to the people who are young and don't have any other major health issues (as is so often the case with those with "normal onset"). I will share the answer with you in the hopes of preparing you in case this happens to your loved one. They said that the person begins to develop rigidity, beginning with the feet and legs and the hands and arms. My DH experienced precisely that - his feet and legs (calves and thighs) became stiff with muscle spasms that required daily massage and Baclafen to relax the muscles. My DH was diagnosed with Lewy Body Dementia, but I don't believe the rigidity was associated with LBD. The progression was reflected in my DH's gait (he walked very stiffly and had a lot of trouble with stairs) and in his balance. If you see these symptoms, check for charlie horse-like muscle spasms in the feet and calves. Your loved one may not be able to tell you, but this is very painful and, for my DH, required pain medication.
Another factor to consider is whether there are other health issues. Sometimes having strokes or heart attacks will take them early. Some have cancer as well, which takes them sooner. Several of our spouses have other health issues that could take them before AD does, or AD will advance more rapidly in some without rhyme or reason. Most of us hope that one night they will go to sleep and not wake up - no suffering, no pain. I loved Sharan's road too.
Great post Emily. Based on my limited research, the rate of progression in familial AD can vary depending on the genetic mutation and variant. Studies have shown that those who have both APOE4 and an eFad mutation will progress quicker and the age of onset is earlier.
Here is a link to a recently completed study on the rate of progression by Rachelle Doody:
Trish, thank you for posting that. They are basically saying (if I understand it correctly) that it is indeed possible to predict the survival time of an AD patient by measuring the rate of progression of the disease up to now, using test scores, a measurement of daily living activities etc. The faster the rate of decline up to now, the shorter the time left to live, since it seems that fast progressors continue to progress fast. Slow decliners will live longer.
Basically, yes I suppose so. A slow decliner is likely to remain in the slow decline group and vice versa. I'm going to guess that there must be--for almost any AD patient--a point at which the decline becomes more precipitous near the final stages, simply because the lost functions themselves tend to exacerbate decline.
Right now, I can't really comment on what type of beast this is. Supposedly SLOW..but in the past month things have begun to change. Not sure why or whats causing..Not sure if its vascular issues or if progression has made DH sleep and seem like a zombie when he has no medicational reason for it. He is more confused and I'm sitting here thinking am I imagining that its worse or IS IT WORSE? What does that mean if its worse and eeghaddsss.. .The 'mountain road' is winding but I don't know if we've gotten to the top and started back down or if we're still climbing. I don't know what to think.. Half of me thinks we've still got years and years to go.. Half of me thinks, this is going too fast.getting ahead of all my hopes to be able to have DH enjoy participating in a day program or more social opportunities. He just seems not to be really 'there'. Riding down the road..sitting on the porch..attending a ballgame...he's there but he's not..if that makes any sense. His eyelids are heavy like he's so sleepy he can't hold them open. Well.. I digressed.. sorry.. Its just the perception of progrression that caught my attention. I wish there was a way to KNOW what was going on..but you are right.. there is no way to predict anything.
What I got out of the article is it goes by the drop in MMSE per year and reading level. My hb droppped 4 or more points on the MMSE in a year and his reading came at 4th grade level. His reading has always been bad (people always wondered how a printer could be such a horrible reader). When his PCP asked him the questions a couple weeks ago he scored 17 - down from the 22 in January. Will wait to see what the neuro says later in the month. Anyway, if you combine those two stats it would indicate a faster decline.
Only time will tell. Kind of like that formula for a child: if you take their size at 1 year old it will indicate their height when full grown.
My wife, Sharon, has a mutation of the P1 gene. Her mother was dead at age 59 and her grandmother at 56. Sharon was diagnosed in the fall of 2007 though we saw some earlier signs as early as 2002. In 2007 she could drive, shop, pay the bills (though she sometimes paid them more than once), perform all of her own care as well as cook and care for the house. Now, 2.5 years later she requires 24/7 care. She cannot go to the toilet by herself, dress, cook, eat, bathe..... she cannot do anything at all. She requires help to walk even on level ground, she cannot negotiate stairs. Her posture is stiff and tilted. She is 59.
Thunder, that is interesting. (not to mention, obviously, devastating.) There's a clear illustration of the rapidity of degeneration in a familial case.
For those facing and walking through the devastation of early onset, this thread is particularly helpful.
I remember all too well the question and the quandary of having an early onset DH (symptoms started at around 44, but he wasn't diagnosed until 51). I had no idea, like all of us, how long he would be here and the thought of 20 years was unthinkable. My DH's disease seemed slower in the time leading up to the last 18 months or so and really accelerated in the last 9 months to the point where there was literally a daily decline that was measurable, quantifiable, and objective. Even then, I had no idea how long he would last because this journey is like being on a roller coaster ride that we know will end in the death of our beloved but we don't know where the bottom is or just how far down it is going to go before the moment of death arrives. Another apt description of the experience is like traveling through the mountains in a car where you cannot see where you are going because the mountains are so big and, although you see signs saying you are headed toward the destination, none of the signs come with a mile marker nor do they tell you how far it is to the destination. Instead, its just "yep ... this is the road you are on" and the road is pitted with huge potholes with sprinkles of sunshine. I know the agony of the powerful twin forces grinding at your soul - the one twin doesn't want to lose the beloved (even though the beloved is not the same person) and the other twin cannot imagine watching this horror FOREVER, which 20 years would pretty much feel like.
I don't know how long your journey will be, but know there are others who have gone before you (like me) and the road was not nearly as long as I feared and my DH's death was not nearly as crushing or devastating as I imagined it would be.
Sharan, I had a similar experience. Jeff seemed to progress so slowly in the early years that I figured it would be a long haul indeed, until he hit a point where the decline got strikingly steeper and steeper, and--from that point--he was gone in <2 years. As it turned out, he came pretty close to hitting the average "8 years from diagnosis" mark.
I will admit that, while the decline was hard to witness, I was relieved. For him and for me. Now that many moons have gone by, I am only just starting to be able to revisit our good 20 years and really feel the person I lost. It's like that old "I feel him with me" cliche. But he was unreachable for so long that the pain and repressed feelings that caused had to start to wear off.
I was just thinking about DH progression the other day. Just 3 and half years ago he was still teaching. Now he needs help with all activities of daily living, getting dressed, eating, bathing, personal hygiene, and toileting! He has no family history of the disease, yet has progressed very rapidly. He was diagnosed at age 46. Rigidity has set in lately as he leans a bit when walking and his arms and hands really struggle to function correctly. thanks for this post it was interesting to hear every one's insight!
Thanks Emily for your posting and your honesty. I, too, often think with dismay that this could go on for so many years. Then I feel guilty to wish it to end sooner.
We are only at the beginning, so my problems look trivial compared to the serious later stage issues. But it is an odd time of being married to someone that appears "normal" to everyone else, but is far from it at home. I spent ages on the internet looking at research on speeds of progression until finally realizing that each person is unique, and I will just have to take it as it comes.
We are in the middle of the driving issue. My husband had his license revoked after a brain injury two years ago. He also has early Alz frontal variant so it won't get any better. It seems logical to continue as we have for two years without him driving again, but he is determined to get his license back. We live in a small place so he can walk everywhere.
I have written to the Motor Vehicles people with all my concerns, and begged his doctor not to recommend him. Now I am waiting to see what happens. In between I am trying to get a better grip on all aspects of our computer and wireless network since DH, who was my computer expert, gets so mixed up. But he thinks he is fine, so gets so angry when I want to understand how these things work.
I wonder if a steady diet of these kind of issues will wear me right out, and then I see what people deal with later on. But I still find it very helpful to read here and know that others have survived this journey.
judyBC - never minimize what you are going through. We all know it will get worse and each stage is readjusting to it. Right now it is new to you at this stage of the disease which makes it hard to deal and process. Just when you think you get a handle on it, it is guaranteed to change.
There were two tasks in the cooking department that my DH was able to perform, despite his dementia. He had made yoghurt and baked home made bread for as long as I can remember - didn't need to read the directions on the package of yoghurt starter, and baked bread without using a recipe. Well, last week, he failed miserably at both. I have taken over the yoghurt making responsibilities for him, as it is critical for my health that it be made properly, and I will be watching him like a hawk this week while he goes through the steps of making bread. I don't want to take this away from him too! Last night he couldn't remember that he had already had a bath, even though he had just stepped out of the tub a half hour earlier (I am thankful he still bathes). And I frequently have to remind him to eat his dinner. I am finding I don't have the patience to deal with this disease that I had before, and it is so difficult to watch the peaks and valleys of the progression of the disease. Just another phase, and I will have to learn to adapt.
Judy BC It sounds like you are handling the situation. I know my husband stopped driving in 2010 after a near accident and after I learned that if an Alz patient is in an accident I could be sued. That was enough for me. I guess I was fortunate in that he did not give me any hassle with it. Believe me no issue is trivial with this disease. As I reflect back I see the driving issue as pointing me to another stage of the disease. After he quit driving it was all up to me to take him anywhere. I work from home so it was a hardship. I can only share my journey but for me the seemingly "little annoyances" that happen every day did wear me down to where I became a totally angry and frustrated person. I too feel guilty when I wish it would end sooner rather than later but it is what it is and the disease has its own mindset and there is really nothing I can do except do things for myself and get on with my life. I placed my husband 9 months ago because of the emotional toll that it was taking on me. Until one has walked the walk, they do not understand. But I am blessed to have this website because I know that everyone here understands. God bless and we are here for you.
JudyBC, My experience was a little like CO2's. We had some luck in that my husband’s 16-year-old station wagon (which he did not think was old, since it was a Volvo) broke down and could not be repaired at a reasonable cost. I donated it to public radio and told him we’d get him a new one in the Spring.
Then I started, little by little, to take charge of driving our remaining car. I would just precede him out the door and get into the driver’s seat. If he offered to drive, I’d say something like, I’d rather have him in the passenger seat so he could hop out and load stuff into the back. What I said often didn’t make much sense but it sounded to him like he was going to be helping me out. My goal was to make him think there was no reason for him to drive so I always acted as though I was happy to drive him, even though sometimes it was inconvenient. During this time, he drove very little, and only within a few miles of our house.
The crisis came in 2009, when he went to meet some other men for breakfast at a place just down the road. He did not return for 14 hours. I involved my family, a neighbor and the police in the search. When he pulled into our driveway after 11:00 that night, I went out and hugged him and slipped the car keys out of his hand. I never gave them back and he never drove again. Sometimes he would offer to drive and I would thank him and say maybe later.
Now when we go for rides, he points to cars that he would like to buy. (A lot of them are the same make, model and color as the car we are riding in!) I agree that we might buy one of those cars and promise to help him look for one later in the week.
My husband’s license was never the issue. He started driving on farm roads when he was 13, so I don’t think a piece of paper would have made any difference to him.
Hi Judy BC, sorry you're going through the driving issue. We had 2 very scary incidents, the first was he got lost on his way home from a college basketball game which was about 25 miles away in late January. It was a night game and he should have been home around 11:00 pm. At 4:30 am I got a call from a policeman in a town about 25 miles south of where we live which was in a different state saying they had my husband, he was confused and they wouldn't let him drive home. The second incident happened 3 months later. He apparently left around 1:00 in the afternoon on a Sunday to buy ice cream at the local grocery store. 5:00 am the next morning I got a call from the state police 2.5 hours south of us advising me they arrested him for going through a toll the wrong way and I had to get him. Based on the ezpass he had on the car and my debit card bills I was able to determine he drove about 250 miles or more during the 16 hours he was missing and spent $150 in gas. Thank god he didn't get into an accident and injure anyone. I took the car away that day and he hasn't driven since. Only occasionally does he ask to drive and I sweetly tell him he drove me all those years, now it's my turn so he can relax.
The doctor did write to motor vehicles letting them know and they suspended his license.
We've had some horrible issues/battles but thankfully driving wasn't one of them.
Thank you for all your supportive comments. It is really great to hear from people who understand. Friends do try, but I don't think they really get it. Each little issue on its own sounds small, but friends don't see how relentless the issues are.
Hopefully with more practice I will get better at just agreeing with 90% of what he says and so avoiding his angry responses if I even hint at a different view. Our poor dog spends so much time shaking in fear in response to all his anger and angst that come mostly from the brain injury I think, rather than the dementia. It can't be healthy for anyone to be around this. He is on a couple of anti depressants to help with anger management, but they only work a bit. At higher doses he is too drugged to function.
A few friends have asked why I stay, but how can you just abandon someone who copes so poorly with life? As I'm sure you all know, no easy answers.
No, there are no easy answers. I am sorry you have to deal with the anger issues along with everything else that dementia brings.
And you are right, each little issue on its own doesn't sound like much, but when you add them all together the "whole is more than the sum of the parts" and along with having to deal with these issues on a daily basis, our thoughts turn to those nagging questions - what is next to fail? which leads to how long can I do this? or where is my line in the sand?
I told the doctor I was using my 24 hours in the hospital as 'respite' and I did. After I woke up from the surgery and my sister left, I slept as much as I could. I know much of it was the anesthesia and medications but it felt so good to sleep and not have to listen to repeating or just sit in silence. I did stand a couple times during the night but the nurses did not push me. They just let me sleep. The first two days after when my sister was still here I still slept a lot. I finally felt rested. Since them I am back to my old sleep pattern of not being able to go to sleep until after midnight and waking up around 7. I try to sleep when I go to lay day due to being tired or hurting but can't sleep. That makes me so mad. I feel tired all the time. I do take a sleeping aid but it doesn't keep me sleeping after about 3 hour.
Yes, even if they are not ''that bad" it is still draining on us.
Charlotte, you sound like I do. Tired all the time. I think it's the stress of knowing, or not knowing, what each day is going to bring. I go to sleep after midnight, as you do, sometimes even later, feeling so tired but yet loving the feeling of quiet. I wake at 7 and realize I didn't have enough sleep and go back to sleep, feeling bad when I awaken too late. Fortunately, my husband sleeps late too. He used to go to sleep at 8 or 9 but is up until 11 most nights now, probably because he takes too many little naps during the day. Having the aide here next week might make this better. She'll keep him busy. I can't wait to see if he will go for a walk with her! He looks at me like I'm crazy if I suggest it.