• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

is this common?

chip

Registered User
Jul 19, 2005
400
Scotland
In 4 months my husband has went from speaking, following instrutions, trying to help, going out,eating himself and not incontinent. To unable to communicate, follow instuctions, go out,or eat himself and challenging behaviour. This has also happened after seizures. He is now also jerking and they are having problems controlling him. Is this common with younger sufferers to go down so quickly? How many have had myoclonics and seizures causing a rapid deterioration? He was only diagnoised 2 years ago as well. He is now 54yrs old.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I'd be looking at current medications, and whether there had been any periods in assessment. Those are both what caused major steps down for my Jan.

Changing meds can retrieve the situation sometimes.

After Jan would have a seizure, she would often actually appear much better than before the seizure for a day or so. Almost as if her system went into overdrive to cope.

It was the assessment centres that her downfall each time though, and eventually led her to needing a care home..
 

jackie1

Registered User
Jun 6, 2007
238
Cheshire
Hi, I'm sorry this is not something I've had any expereince of. But I just wanted to say I really feel for you, it must be such a scary time. I hope that the Drs can look at his medication and hopefully things will settle down
((HUGS)))
jackie
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Like Jackie, I haven`t experienced such a rapid decline but I imagine it`s horrifying.
In fact I can`t imagine how it must be for both of you. All I can do is send you love and sympathy.

xx
 

sue k

Registered User
Jun 26, 2007
140
warrington cheshire
hi jackie

my dad was diagnosed 12 months ago

he went from being muddled and confused , and slightly agressive and verbally abusive to the way he is now...................

immobile , incontinent , unable to feed himself, doesnt speak, sometimes just a yes or no, and he doesnt recognise his family any more.

Hes has several urinary tract infections, and 2 chest infections during the 12 months but he has declined rapidy

Heartbreaking for me to witness,
i pray to god he isnt aware of what is happening to him, but when i see the frighened haunted look in his eyes , i sometimes think he does know , and that , hurts me deeply.

Such a cruel, vile illness for us all.
 

Petrus

Registered User
Aug 7, 2007
61
Northumberland
Early & Rapid On-set

Early on-set Alzheimer's is relatively unknown (except to those of us who have to care for someone). Within that there is a group who also have rapid on-set. The two consultants we have met (one old age psychiatrist; one neurologist) plus my own background reading say that if on-set is rapid it is likely that the disease will continue its inevitable progress rapidly. The literature says that death will come on average 2-5 years after diagnosis with diagnosis typically during the moderate phase up to 2 years after on-set.

J. was moderately severe on diagnosis June 2006, 6- 9 months after on-set. She is now severly demented (although her social interaction and communication skills are significantly better than this). The psychiatrist consultant has advised me and the family to plan on the basis of needing Home Care this winter and life expectancy to be no more than 18 months beyond that. However, as she clearly says, "It is impossible to predict what will actually happen".
 

Big phil

Registered User
Jun 27, 2007
12
East Sussex
Early on-set

I have some similar experiences... Early on-set got my wife at 54/5 and yes it seems the younger it starts the more rapidly it takes hold, and the more rapid the deterioration.
Again the assessment center 'helped' in the deterioration, however one never knows what would have happened if ones loved one hadn't gone into an assessment center???

Life expectancy ?? well My wife is now about 2 years (or expectancy +50%)past the doctors 'sell by' date, so you can see it is a lottery... but is that any benefit??? and if so to whom?? she suffers longer... I suffer longer, the nursing home make more money.... sorry I seem to have my cynical hat on today!.... I wouldn't wish to be kept alive in the condition which my wife now finds herself.:confused:
 

annesharlie

Registered User
Apr 10, 2007
80
Vancouver Island, Canada
Phil

I really appreciate your honesty. It must be such a difficult time for you - you have - to all intents and purposes - already lost your wife, but you are not single, you are in a ghastly in-between state. I know it must be a hard adjustment. However this disease plays out, quickly or slowly, it is dreadful either way.

Thoughts to you
Anne
 

Petrus

Registered User
Aug 7, 2007
61
Northumberland
Assessment Centre

Comments about "assessment centre" in this thread intrigue me. In Northumberland, as I understand it, assessment is done through home visits and outings with the sufferer. (This is what has been done with J. over the past couple of months.)

Am I right in thinking that "assessment centre" means time away from home (overnight?)?

My interest is that I have also heard of sufferers showing significant decline when spending time in respite care. I was talking that with our son today as we work towards putting J. into a Care Home later this year for a respite break. We are both thinking through, "Are we able to deal with any guilt feelings if J. shows a significant decline during the break". We are pretty sure that she is on the edge of a significant collapse; leaving home certainly could trigger that if nothing else has done so before.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Often assessment centres are inpatient facilties where people stay for some time while medications etc are balanced.

Although you are correct that moving someone from home to a care facility of whatever kind can trigger a decline, at least some part of that decline can, I think, be attributed to the fact that in an unfamiliar environment, deficeits which may not have been obvious in the home become clearer. That is: the person doesn't actually get worse, but in a new environment the coping strategies (however small they might be) they have mastered for home are now not applicable.

Of course in assessment type facility, where the primary purpose is to modify medications, is much more likely to trigger this. Also, of course, there are good and bad facilities, and in the latter, there may be a very low staff/patient ratio so the on-on-one care that so many of our loved ones need can be sadly lacking.
 

Petrus

Registered User
Aug 7, 2007
61
Northumberland
Thanks

Jennifer,
Thanks. Helpful perspective. I suspect you are right about the impact of unfamiliarity; I had not thought of the impact on coping mechanisms.