How long after diagnosis of cognitive impairment were your loved ones diagnosed with dementia?

[El31]

My mum who is 69 was diagnosed about 6 months ago with a cognitive impairment and small vessel damage which showed up on a scan. The thing with my mum is her memory is still there but her personality is not. My mum is a shell of a person she used to be, she walks around looking like a mess, doesn’t brush her hair, lives in a complete mess, doesn’t do housework but says she does, can’t sequence tasks like washing up, doesn’t cook food properly. Table manners have gone, she will happily pick food off other people’s plates and eat it.. she is also so vague , I talk to her and she either changes the subject to one of her fixations, walks off or stands there smiling looking blank.
She becomes fixated on things, at the moment it’s this new fruit squash and she’s bought 4 bottles of it.. she goes on about the same things over and over and she is also very rude to people, walks off mid conversation and just doesn’t know what to say. The strange thing is her face has change, she looks so tired all the time. She also goes to bed really early every night.
Anyway I was just wondering how long it takes for people to deteriorate to the point of actually getting a dementia diagnosis .
my 75 year old dad is back at work to avoid her, I’m only 32 , pregnant with my second child and I just don’t want to be around her which I feel so guilty about. Sometimes
I wish her memory had gone first and not her personality, I struggle to emphasise and support her.
Sorry for the rant but it’s just so ****! I’m
A social worker with adults, mainly those who have dementia, I know what the disease does and I just wish it would be over and done with (as bad as that sounds).

 

[Trekker]

Welcome to DTP El31. Your situation will be familiar to many on this forum and I am sure you will receive lots of supportive responses. What you describe sounds like dementia, and I am afraid this rate of progression is not uncommon. Having seen, as a professional, how this disease plays out it is hardly surprising that you don’t want it to be a drawn out process for your mother. Many many of us feel that way. Please don’t feel guilty- although it is perhaps inevitable that we sometimes do. No one with any knowledge of dementia would wish it be prolonged for anyone, let alone those we love, although sadly it often is.

 

[Louise7]

The thing with my mum is her memory is still there but her personality is not.

The examples you've given - a downturn in appearance, thinking that she has done the housework but hasn't, forgotten how to wash up & cook, vague, repetitive, and forgets what to say during conversations - are all indications of memory problems. It's really difficult to cope with changes, particularly when they have come on so quickly, but seeing them as memory problems rather than a change in your Mum's personality may help. Try not to feel guilty about how you feel as you need to look after yourself and put your pregnancy first.

 

[Kevinl]

I think a better question would be how longer after the family observed a cognitive impairment rather than the official diagnosis date, from the family knowing something was wrong to getting a formal diagnosis can be months of as in my wife's case years.
Different types of dementia progress in different says and the speed of progression varies from person to person as I'm sure you know.
K

 

[northumbrian_k]

My wife never had a diagnosis of cognitive impairment but I was aware that she was having problems - and had raised these with her GP - long before her dementia diagnosis 3 years ago. At that point I started looking back at things that had seemed slightly odd at the time but had not set alarm bells ringing, which with hindsight were probably the beginnings of her dementia. This took me back to at least 2010, meaning that it was 6 years from first signs to formal diagnosis.

 

[Lawson58]

My GP used a tentative diagnosis of MCI as part of getting tests done but it was never formal. I am not sure that it's an essential part of the process and I don't believe that everyone with a diagnosis of MCI goes on to develop dementia.

My husband's short term memory has only just begun to fail but his long term memory is non-existent so he doesn't fit the most common patterns of dementia. It took a year of getting scans and neuropsychological testing for that diagnosis to be made.

 

[canary]

If it helps, the statistics are that aprox 50% of people given a diagnosis of MCI have their diagnosis changed to dementia within a year.

Of the remaining 50%, some will get a diagnosis of dementia later and some will never progress to dementia, but there are no statistics that I know of about this.

 

[El31]

Thank you everyone for your replies. I definitely think my mum will go on to get a diagnosis, she has deteriorated over the past 4 years quite significantly. When she had her memory tests my dad and I couldn’t quite believe it, she got 97/100, even him and I couldn’t remember that blokes name and address you are supposed to repeat back
But watching her interact with the consultant it was clear there was something wrong and they couldn’t
Diagnose dementia because her problems are not effecting her daily living, well actually they are because if it wasn’t for my dad she would prob have food poisoning and the house would become cluttered with all her obsessive buys.
Before she had the memory test and they had just looked at her scan, the consultant said that she was going to diagnose vascular dementia but after meeting my mum she couldn’t do this. I have decided to just take each day as it comes and to be there for my mum as much as possible, making memories while we can. Xx

 

[rainbowcat]

I first noticed something wrong with my Dad in 2010 - he wanted to go to his old work's club/bar in Central London and asked me to tag along. We were walking along the street and Dad suddenly stopped at a line in the pavement and was going "wooaaahh, wooohhhh" and flapping his arms like he was trying to stop himself falling off a step. I didn't realise at the time, but this was the beginning of spacial awareness problems and also his brain mis-interpreting reality.

As time went on, his mobility started to fail, he couldn't hold himself up while walking, became slightly incontinent, stopped going out and isolated himself in his bedroom, stopped washing or putting on clothes. Needed someone to prepare even simple foods for him. His logical thought and reasoning seemed to be changing. He had a tremor and drooled a lot. In 2013 I'd had enough of my mother (they house shared for finance-sake, had been divorced for many years) making herself out to be some kind of martyr because she made him cereal and sandwiches every day, and took my dad to his GP. GP was horrified at the state he was in, and social services and OT got involved, so Dad was at least assessed for height of bed etc and carers came in to wash/dress him every day.

In 2015 - after my mother died - he fell down the stairs and ended up in rehab hospital. Speech therapist saw him and ordered scans, which found his brain had shrunk (global atrophy) and small vessel disease. ACE-r tests gave him a score of 77, which is "severe cognitive impairment" but I was fobbed off with "that's about right for him, most of us wouldn't have scored so high" etc.

In 2016 his GP said it was dementia with Alzheimers. HOWEVER. Because it was the GP and not a specialist, this wasn't taken seriously by social services or the hospital, both blatantly told me "he does NOT have dementia".

2018, after I kicked up a massive stink about no further cognition etc tests happening after a second stay in hospital, the dementia specialist got involved and he finally had his dementia diagnosis.

SO. 6 years between first noticing a problem and having his GP confirm this. Another 2 years before this became official. 5 of those years were spent fighting for an official diagnosis.

 

[Naomi25]

My mum who is 69 was diagnosed about 6 months ago with a cognitive impairment and small vessel damage which showed up on a scan. The thing with my mum is her memory is still there but her personality is not. My mum is a shell of a person she used to be, she walks around looking like a mess, doesn’t brush her hair, lives in a complete mess, doesn’t do housework but says she does, can’t sequence tasks like washing up, doesn’t cook food properly. Table manners have gone, she will happily pick food off other people’s plates and eat it.. she is also so vague , I talk to her and she either changes the subject to one of her fixations, walks off or stands there smiling looking blank.
She becomes fixated on things, at the moment it’s this new fruit squash and she’s bought 4 bottles of it.. she goes on about the same things over and over and she is also very rude to people, walks off mid conversation and just doesn’t know what to say. The strange thing is her face has change, she looks so tired all the time. She also goes to bed really early every night.
Anyway I was just wondering how long it takes for people to deteriorate to the point of actually getting a dementia diagnosis .
my 75 year old dad is back at work to avoid her, I’m only 32 , pregnant with my second child and I just don’t want to be around her which I feel so guilty about. Sometimes
I wish her memory had gone first and not her personality, I struggle to emphasise and support her.
Sorry for the rant but it’s just so ****! I’m
A social worker with adults, mainly those who have dementia, I know what the disease does and I just wish it would be over and done with (as bad as that sounds).

This must be so difficult for you watching your mum turn into someone she wasn’t previously. Such a cruel disease. I understand about not wanting to be around her as I’m the same with my dad.

I’m afraid I can’t help in terms of how long it takes for an actual diagnosis. My dad had memory problems for about 6 months before he was diagnosed which I know is a relatively short amount of time. That was about a year and a few months ago and he has deteriorated quickly since then. Sometimes I feel like it’s having a ghost there and not a person.

It really is s***! I feel for you especially dealing with this whilst pregnant.

That probably wasn’t much help apart from the fact I can completely relate to how you feel.

N

 

[Blodski]

My mother is 79 and has Vascular Dementia - diagnosed in 2018 after quite a battle to see the Consultant and 'persuade' them that my mother did indeed have Dementia - not just a cognitive impairment.

However, now that I look back, I can see that symptoms started around 2014 around the time her own mother died (she was 100). Early symptoms were loss of appetite, a general slowing down, forgetting things, and having trouble with cooking/planning meals. So that's about 4 years from symptoms to diagnosis, although it was probably there well before that too. Hope that helps.