How long is typical in stages 5, 6 and 7

Grandx7

I have read as much info as I can find and want to know from those going through this what you have experienced with time in different stages.  Other than arthritis and this horrible disease - he has VD, FTD and AD , he’s been very healthy and active all his 74 years. 

As we all know, this is so hard.  I have people I know that have gone through this say they found themselves actually looking ahead to when they are no longer in this misery.  I’m been in the intense throngs of this for 2 plus years, mild for 16 years - but have been the verbal punching bag throughout.

Crushed

No one can tell you.  Every case is different.
   
DW was MCI in 2010 and EOAD in 2012 but those are just dates. 
She was psychotic with delusions in 2017 
She went into memory care in September 2017
She last had any  idea who I was in 2018.  
Last meaningful speech was 2019

In 2021 she walks and eats and that is all.   
She is 69
 
Let me say as I always have  
NO ONE HAS THE RIGHT TO ABUSE A PERSONAL CARETAKER

Get help and get out  
 

Doityourselfer

My 63 year old husband with EOAD has been in early stage 7 for 1 1/2 years now, went through stage 6 in about 2 years, and stage 5 for about 2 years.  These years have all been intense but the earlier stages were the worst in dealing with his agitation.  

I'm one of those caregivers who look forward to the days when I'm no longer his caregiver.

LadyTexan

I believe any time estimates you find are just wild guesses because the journeys and the timeline are unpredictable. I can share what our timeline and situation is:

My DH is a smoker. He had a heart attack in 2015. He had high blood pressure and high cholesterol. He ignored his dental health for a decade or more. Occasionally, he will put on extra pounds.

• 2016 - symptoms started becoming apparent to me.
• 2017-2018 - symptoms continued including multiple car accidents. I am guessing this was stage 5.
• February 2019 - diagnoses of Early onset Alzheimer's disease. Based on my observations, I would say DH was late stage 5 and early stage 6.
• August 2020 - solid stage 6.
• November 2021 - late stage 6, leaning into stage 7.

If my dear husband does not suffer from this disease another minute, we are both okay with that. I do not want longevity for him. I want him to have a good life, not a long life.

My dear husband was especially verbally abusive earlier in our journey. He was drinking abusively for a very long time. That made everything SO MUCH WORSE. I contemplated divorce. We are still together. I remain safety aware. I always have a charged cell phone on me. I won't hesitate to call 911 and/or leave the house if DH becomes a threat to my safety.

Quilting brings calm

There are charts that list average stage lengths of duration.  AD is typically 2 years a stage.  FTD and VD faster.  However, those are statistical averages.  As others have said, it varies wildly for individuals.  I’ve seen posters state that their loved one have been battling dementia for close to 20 years.  Your spouse is relatively  young and physically in good health.  He could last quite a while. 

My Mom is 83.   She’s shown signs for over 3 years.  But she waffles back and forth between MCI and stage 4.  A UTI makes her seem a lot worse,   Her Mom lived to age 97, as did her grandfather.  Mom  could be in this battle for another decade or more- her normal life span

harshedbuzz

It is really hard to say.

I had 2 aunts in their 80s who had VD at the same time. One was diagnosed in midstages in 2007; the other in mid-2016 (around the same time as my dad was diagnosed with mixed dementia). The latter's disease progressed more rapidly, especially after a fall and surgery to replace a hip. The former's progression moved at a glacial speed; her late husband had clearly been aware something was going on prior to his death in 2003 and extracted deathbed promises to look after her. The latter aunt died about 6 months before her sister in late 2017; the former in early 2018 just before my dad did. 

Tam Cummings lists averages for Alzheimer's but they aren't necessarily applicable to VD or FTD.

Stages of Dementia Dr. Tam Cummings

HB

extex

We have been at this since my wife began getting lost on local car trips in 2009.  I would have her visually describe her surroundings on the phone and go rescue her.  That’s over 12 years ago.  Currently she has zero short term memory, doesn’t know who I am,  and doesn’t recognize her kids or her brother.  She is ambulatory, verbal but cannot perform ADL’s without assistance.  She has severe sun downing delusional and illusionary issues beginning about 4pm daily. She eats very well.  She needs her wet depends changed about three times a day but no other bathroom issues.  She sleeps about 12 hours per night and most of the time during the day.  She has no other health issues other than severe kidney disease due to long term type IIdiabetes.  Right now I think this could last for another 5 or 6/years because her rate of decline has been so slow since the onset.

Hope this gives you a little insight into what you may be facing.  Luckily, my wife is a very easy patient to care for.  We had a broken ankle in 2013 and a broken hip in 2018.  Those have been her only hospitalizations.

Grandx7

Thank you for all of this information.  I’m going to keep looking for FTD specific info.  And I am looking foe help.

Homewerk

A couple of days ago we met with his neurologist. I asked her if she assessed that he is in the severe stage of FTD. She said with FTD she uses three stages: early, middle, and late. He is late stage: fully incontinent, apathetic, myoclonus tremors, binge eating, unintelligible speech, needs help with all ADL’s. Roughly analogous to Stage 7 AD.  In my mind, if I think of late stage FTD in football terms, his second quarter is well underway.  In terms of “how long?” This is his timeline:

EARLY STAGE, 6 years

2013. Still working in an executive position. Exhibiting speech difficulty, losing things, inability to focus, disorganization. Retires at 65   

2015. Speech problems have worsened, especially word finding. 

2016–2019. Diagnosed as MCI/early stage AD.  Stops driving. Speech problems worsen slowly, personality intact.  Participates in 2 AD drug studies.  Some memory lapses appear.  Fully engaged in the world  Follows the news closely. Can read and write, play the guitar, sing, paint, walk normally.  

MIDDLE STAGE, 2 years

2019 —2020. New neurologist diagnoses him as FTD speech variant, Primary Progressive Aphasia non-fluent.  Speech deteriorating more rapidly. Stops reading and writing.  No longer shoots pool.  Can’t sing or paint.  Walking slows. myoclonus tremors intensify.  Voice has changed  speaks in a slurred whisper 

LATE STAGE, 11 months and counting 

2021  Apraxia develops. Has lost connection to his body  Stiffens. Sleeps in odd postures.  Fine motor control severely impaired.  Must have assistance with all ADLs  Doubly incontinent. Speech is unintelligible.  Agitation appears. Naps heavily during the day, in and out of bed all night.  Affect flattens, no interests except binge eating and pets.  Neurologist says to expect decline, then plateau, then decline.  Sets next appointment for 3 months instead of 6.

In the spring, his rate of decline accelerated.  I wasn’t at all certain he’d be here for Christmas. But here we are.  Might have another year or so.  We will both welcome the end.