Signs of early-onset?

[happyfeet]

Hi, I saw how active this forum is and would like to hear from people who have loved ones with early-onset alzheimer's. What signs did you first notice? How would you recommend talking to your loved one about it and how hard do you press them to seek diagnosis?

I've seen articles detailing general signs but I am curious to hear specific minor things you noticed that in hindsight you know were signs of the disease.

 

[Chemmy]

Hello happyfeet

Welcome to Talking Point.

I haven't any experience of early-onset but there are plenty of members who have and I'm sure they will be along to offer support. You might find the Society's factsheets a usefu source of information

 

[jaymor]

Hi and welcome to TP.

My husband ran his own business and dealt with people buying large houses that needed renovation or alterations. He would come home and tell me all about the latest million pound plus house he had been to see and what work they needed doing to it. Then when seeing our son at the weekend he would tell him about it but ask me what he had said the house was worth. He could remember all the general stuff but the precise part he had forgotten. He also started using a notepad where as he had always been able to keep everything in his head. He was 62 when he was diagnosed so had maybe had the disease for around 2 years or at least a very bad memory.

At this time our daughter had not been very well and had had tests etc. to be told at the age of 35 she had MS. I am sure this was the turning point, it was as if she can face upto having MS then he could face that there was a reason for his memory problem other than as he said 'old age'. So wewent to see our GP. Our daughter took the attitude that MS had to live with her not she live with it. My husband was the same and with lots of notebooks he was able to carry on working for 4 years. I always wonder how many jobs were done and not invoiced because he had forgotten they had been done.

Jay

 

[Ko Ko]

Early Onset

Hi, I saw how active this forum is and would like to hear from people who have loved ones with early-onset alzheimer's. What signs did you first notice? How would you recommend talking to your loved one about it and how hard do you press them to seek diagnosis?

I've seen articles detailing general signs but I am curious to hear specific minor things you noticed that in hindsight you know were signs of the disease.

Hello Happy Feet well my partner got diagnosed with early on set a few weeks back. I first thought somthing was not right on my Birthday as my partner has always beeen so organsied well they lost my presents in the house normaly my partner would have been mortified but they just was not botherd i asked my partner were they had put the things and they just said dont worry its not important i knew then somthing was not quite rite also her memory has gradually been getting worse plus her speech not being able to get words out just little tell tell signs. I spoke to my partner about it but she did not think it could be it it was a neuro physiotherapist that picked up on it and reffered us to the memory clinic at moseley hall they have been fantastic. My partner is only 41 it was quite a shock at first but you need the help from a professional .
Kind Regards
Ko Ko

 

[happyfeet]

I appreciate the replies so far. My mother, 65, has been showing worrying signs these past two or three years. We thought it was from stress of being a care taker but she no longer does that and still shows symptoms, like writing down her simple fast food orders, forgetting recently learned facts (or mixing them up). One time she was shopping and offered to pick some things up for us, and we gave her four items. She got all four wrong (right category, wrong brand or size) and never mentioned it. I think the most worrying part for me is when she does not herself see it.

We tried confronting her and my father about it, but they think it's from stress or nutrition issues. I think my father is quite worried but lacks the will to push the issue of getting a diagnosis, not to mention their nutritional usage borders on religious and they seem to think anything can be cured that way.

 

[NanLorac]

Hi and welcome from me too. My husband has just been diagnosed with Early Onset Dementia, he is 62. I think that I 1st noticed in the airport last September, he was so confused, left his Kindle on the plane, lost towels, would forget where I was meeting him. I was afraid to leave the hotel complex with him. My son was on holiday in Nov and we went round to the house with milk, bread etc and when I mentioned being at our sons the next day, he told me I must have gone myself he never went with me. That was the turning point for me and I was then watching for more signs. Driving, he had trouble reversing to the point that I had to grab the wheel a couple of times.
I spoke to the GP when he forgot the visit to my sons in Nov and it took me to March to get him to the doctors. Now he can only use pound coins, the smaller ones he cant recognise and cant count them up. He cant read a clock face and his short term memory is bad.
I don't know if that is of any help and I don't know if that is typical of E O Dementia as I am new to this too but talk to your GP on your own if you have to. It took me a few months to post here and it was a lonely few months so keep posting and ask for help here there are some lovely people with big hearts. x

 

[JoshuaTree]

Mood changes that I first put down to grief and stress after my dad died, but this didn't get better with time. Anxiety and I also noticed she would write evrything down to remember only to find she couldn't understand what she had written.
Often while talking on the phone she would tell me to hang on and then it would be an age before she got back!

Bad driving also and sometimes confusion about what direction she needed to go in, although on the whole her general sense of direction was good and weirdly still is.
Loss of understanding about money and the one thing that really springs to mind was how frightened even to tears she was when she had to phone companies up to cancel certain things or confirm things like insurance etc as at that time we hadn't registered EPA so couldnt do all of it for her.

I also remember how she couldnt undertand what was junk mail and what was important mail which resulted in her knocking on neighbours doors to ask them what her mail meant. This wasn't good as some of it was very private and confidential!

Sorry for going on, but I'm finding it quite theraputic remembering and writing it down
We reckon Mum was roughly 64 when we first noticed the signs.

 

[LynneMcV]

Hello Happyfeet

For us, the first of the 'indicators' (listed below) goes back about three years. Most of the others have been a gradual progression of incidents which raised my concern as time went by. Some have been 'one off' or short-lived incidents - but throughout the whole process the ones which have remained regular are repetition, forever losing things, and the loss of maths and map reading skills (the latter two being things he'd always been excellent with.)

Indicators for us were:

• Sitting at the home computer he'd used for 10 years and suddenly panicking that he'd forgotten the password (it has no password and never has).

• Constantly repeating himself whether by asking the same question over and over or saying the same thing over and over.

• Looking at (and discussing with the family) photos of a family wedding from 17 years ago - then minutes later asking whose wedding it was and who the children in a particular photo were, even though he had known them only moments before. It was in fact my brother's wedding (my husband has known my brother longer than he's known me) - and the bridesmaid and pageboy in the photo were our own two children when they were aged 4 and 6. My husband had even videoed the wedding but couldn't recall it.

• Watching a television programme with hubby and him saying 'oh that's so and so (giving actress's name) who used to be in (giving name of tv series). Then in the 30 seconds it took me to leave the room to put something in the kitchen and return to where he was, I was met with him looking at the same actress and saying 'I can't think of her name or the programme she used to be in.'

• Going from handing over 'almost completed' crosswords for me to finish - to handing over crosswords which had just a few words filled in (even though the unanswered clues were things he would normally have got very easily).

• Unable to learn new skills in the hope of getting a new job after being made redundant (we paid for three different courses at different times and he'd forgotten everything he'd learnt within an hour of leaving the class each time.)

• Constantly mislaying things around the house (keys, glasses, hat, mobile phone, wallet) and losing things outside of the house (bank card, jackets, gardening tools, books).

• Suddenly forgetting how to turn the washing machine on or how to set the wash programme (though he'd been able to set it for years)

• Suddenly forgetting how to turn the oven on - though he'd done this daily for years.

• Phoning from an area of London he used to know well, but couldn't find the station he needed.

• Using the wrong words for things eg calling pockets on his bag 'holes', tests as 'tricks', snooker instead of darts.

• Leaving sentences unfinished because he lost track of what he was saying or couldn't remember the words he wanted.

• Finding it harder to follow a story-line in a book (even by authors whose work he normally laps up).

• Occasional stuttering or seeming to be tongue-tied.

• Last summer, being unable to read the road map when we went on holiday to Wales. I am useless at reading road maps myself so knew something was terribly wrong when even I could tell we were going the wrong way. I had always relied on him to read the map for me. It ended up with him throwing the map up in the air and having in an uncharacteristic tantrum after which he refused to look at the map ever again. If it hadn't been for the fact that my daughter was able to use the GPS on her mobile phone to guide me to our destination, we'd still be going around in circles now!

• Starting up random conversations which assumed I was aware of everything he had been thinking about before talking eg suddenly saying 'What would you have done in that situation?' (no idea of what situation he was talking about) or 'Have you put yours somewhere?" (put what where?)

• Struggling with basic maths to the point that he became unable to add up simple amounts either on paper or in his head. Maths had always been his strong point and he had been a finance manager in charge of staff at a large tv centre where he was highly respected and often called on to help others solve accountancy problems. He also trained up many students for work in various finance careers.

Over the years I said to my husband many times that it might be worth getting his memory checked out. He was aware that he was forgetting stuff and he used to happily agree that he needed to get it checked out - but the next day he had always forgotten the conversation - so we would start all over again.

With us, one thing that helped in the end was the big advertising campaign they ran towards the end of last year, urging people to get checked out if they were concerned about their memory. Each time he saw the adverts on tv he would think it was for the first time and say wasn't it good that there was medication to help now - what a coincidence it was, because he had been thinking about his memory lately and wanted to check it out but that he kept forgetting to make the appointment.

We took that as a sign that he definitely wanted to see the doctor, so the next time my daughter was at the surgery she made an appointment for him (which he was quite happy about) - and it all took off from there. That was back in January. In May (three days after his 58th birthday) he was told it was likely that he had early onset dementia - and a few weeks back, following all the tests, it was confirmed.

 

[zeeeb]

My mums symptoms first showed as anxiety / depression symptoms.
Panic Attacks, depression, lethargy, loss of energy, always tired, bags under the eyes, looked terribly depressed. I thought she was having a nervous breakdown. she was 56 when all this started, and 57 when diagnosed.

she had an accident at work, and injured her thumb. It was like the whole world ended for her after that small accident.

Also, in-ability to learn something new like anything computer related. She would have to write down the instructions and read and copy them each time, just to log in to her system at work, and book a company car out for herself, something that would take 2 minutes for most to do, she would spend 45 minutes struggling with. And no matter how many time she done it, she never remembered it.

Same with doing the business tax. she done it for years, every 3 months for probably a decade, and each time it would end in fights and tears and her walking away and leaving it for dad to do because it was too stressful for her.

 

[Redpoppy]

One of the main things I picked up on was that my husband became confused using the remote control for TV. Also he was making mistakes when handling money --that was a problem as he always sorted the Bank account and paid the bills.I went to see our GP on my own to explain my worries,and he suggested I got my husband an appointment to see him for "routine check up" The Dr chatted with him and tactfully said he would arrange an appointment with the memory clinic. About. 2 months later he had scans,blood tests etc and the diagnosis of Vascular /alzheimers was given us.I told my husband he had mild memory problems!.seems to have accepted that and now happily allows me to handle our affairs.He keeps £20-£30 only in his wallet now so that he can still pay for minor things such as the newspaper,chocolate,coffees etc. Hope this helps--I know I have picked up a good few tips reading TP. Good luck

 

[rjm]

Hi Happyfeet

From your description of your mum's actions it does sound like you are right to be concerned. In my wife's case, as in many others, we initially thought her problems were related to stress. And in a way they were; when someone is having a hard time getting through the routine of a day, even though they don't know what's wrong, it must be terribly stressful. Looking back I would say that the earliest signs were a (totally unfounded) suspicion that her co-workers were sabotaging her work, followed by a lack of organisation and an inability to prioritise tasks.

Getting a diagnosis was good for us, it let us focus on where we were going and we could stop worrying about what the problem was. Plus it lets you access care and support services. But, if your parents are managing and not after a diagnosis themselves I'm not sure that the added stress of pushing for one is all that beneficial. There will, however, come a time when it is needed or it will become obvious.

I appreciate the replies so far. My mother, 65, has been showing worrying signs these past two or three years. We thought it was from stress of being a care taker but she no longer does that and still shows symptoms, like writing down her simple fast food orders, forgetting recently learned facts (or mixing them up). One time she was shopping and offered to pick some things up for us, and we gave her four items. She got all four wrong (right category, wrong brand or size) and never mentioned it. I think the most worrying part for me is when she does not herself see it.

We tried confronting her and my father about it, but they think it's from stress or nutrition issues. I think my father is quite worried but lacks the will to push the issue of getting a diagnosis, not to mention their nutritional usage borders on religious and they seem to think anything can be cured that way.

 

[Big Effort]

Hi HappyFeet,

I am replying to this post but be aware my mother is 85 and her dementia was not early onset. But I want to think back and remember the symptoms, which at the time were all easily explainable - mostly due to her being rushed off her feet. Looking back, now I know it was Alzheimers taking root.

* burned saucepans. Putting on a meal to cook, and then settling down to do something else.
* not being able to find words - this was always an issue for her, so we put it down to age as it gradually got worse
* startle response. Just like a tiny baby throws out its arms in shock at a loud noisee, Mum started to do this (and still does). A huge outflung arms reaction to anything remotely loud.
* she was a journalist and it took her longer and longer to write her articles. Eventually what used to take two days filled six. When questioned she would say that this was a particularly important/difficult interview.
* poor organisational skills. When coming to visit us she packed very haphazardly. Again she would tell us she had been madly busy and had thrown everything into the car. And she never, ever set off when she had promised, which made a mess of our day as we never knew when to expect her.
* getting stressed and worried over things that she previously would have handled well.
* being rude and impatient with people she interviewed. She used to be so professional. I remember being surprised at how abrupt she was, telling them off for not phoning her back exactly when requested.
* grandiosity and self-importance. She always thought she was the first to write about such and such, or her article launched such and such a business, or it had been her idea to do such and such - clearly not true, but true seen from her perspective.
* possibly getting more religious?
* really worrying about 'losing her marbles'. Little did any of us suspect what was just down the road for her.
* knowing what was best/right. I think (in retrospect) that she may have upset quite a few colleagues - it was her way or no way.

It feels good to get this written down. Abnormal tendencies appearing normal. Those were the earliest signs.

 

[LYN T]

Hi Happyfeet

Hi, I saw how active this forum is and would like to hear from people who have loved ones with early-onset alzheimer's. What signs did you first notice? How would you recommend talking to your loved one about it and how hard do you press them to seek diagnosis?

I've seen articles detailing general signs but I am curious to hear specific minor things you noticed that in hindsight you know were signs of the disease.

Where do I start except to say that hindsight is a wonderful thing.

Husband had the following signs; Anxiety,depression,difficulty driving,mute in company,difficulty following conversations.Unable to do any housework or make a cup of coffee. He didn't want to answer the phone as he just couldn't cope.He was diagnosed a couple of weeks ago after being admitted to community mental health assessment hospital (this was after a manic episode-very scary)He stayed 2 months and he had a scan which showed moderate AD. I later found out a scan he had 3 years ago showed sign of AD but no one told us.He was also diagnosed with Bipolar.(so talking to him about seeking a diagnosis was taken out of my hands. He is now at home. His latest MMSE scored 7/30 which is not good (but I think his score was partly down to be very anxious over the test!He now has severe memory loss and anxiety and follows me round the house. I can't leave him on his own as he may wander and wouldn't find his way home.He's also forgotten my daughter's name and didn't recognise a photo of his Grandson.He's also started to be active during the night. Still coping but tired. I don't want to get SS involved as he doesn't know his diagnosis and if I left him for a minute he would be very scared. My heart breaks at the thought of how scared he must feel and how scared you must be.

Thinking of you and sending hugs and best wishes.

 

[happyfeet]

Thank you all so much for sharing your experiences and insights. I never made the connection that my mother's increasing frustration and stress at work might have to do with early AD. We just assumed she was tired of working for the person.

Another point was made that perhaps pushing for an early diagnosis would increase their stress at this stage since they are resistant to the idea, and that if it is AD then inevitably no pushing will be necessary as the symptoms worsen. I would embrace this idea but for the fact I want my mother to receive treatment sooner than later. I want her quality of life to be stretched out, if that is possible.

 

[Misprint]

I appreciate the replies so far. My mother, 65, has been showing worrying signs these past two or three years. We thought it was from stress of being a care taker but she no longer does that and still shows symptoms, like writing down her simple fast food orders, forgetting recently learned facts (or mixing them up). One time she was shopping and offered to pick some things up for us, and we gave her four items. She got all four wrong (right category, wrong brand or size) and never mentioned it. I think the most worrying part for me is when she does not herself see it.

We tried confronting her and my father about it, but they think it's from stress or nutrition issues. I think my father is quite worried but lacks the will to push the issue of getting a diagnosis, not to mention their nutritional usage borders on religious and they seem to think anything can be cured that way.

Hi. I have only just joined specifically as I read your post. I noticed signs with my sister and over the course of probably 2 years spoke to her husband and daughters. They were only small things like repeating the same story, not joining in conversations in a social situation, seeming to look into space, not remembering small things which did not really matter but which I knew she would normally have remembered.

She had once spoken to her doctor herself as she was worried about forgetting things but the doctor told her it was normal ageing (late 50s/early 60s at the time). Anyway a few years down the line and I was really worried, spoke to the family who really did not want to see it (if they did they could not face up to it). It got to the point where friends were asking me if I had noticed anything but still I could not get the family to go to the doctors. I found this very frustrating as I was mindful that some drugs might help and I felt she was missing out. It was a very difficult few years for me but probably a lot more scary for my sister as I am sure she was worried herself.

My brother in law did eventually take her to the doctors and she has now been diagnosed. Please don't think he is uncaring as a more kind man you could not find. I think it is sometimes difficult to face up to, especially as you may not know what to expect, so if you do not go down the path of being diagnosed you can convince yourself it is not happening.

My sister is now 65, she is on various medication and we are facing one day at a time. Hope this helps.

 

[rjm]

I want my mother to receive treatment sooner than later. I want her quality of life to be stretched out, if that is possible.

Very understandable, and that is exactly what the available drug treatments are meant to do. I hope you have many years of enjoyable times with her. In Sharon's case we had a good 6 or 7 years after diagnosis where she was able to actively enjoy family life. It is really only the past year to eighteen months that she is really not aware. Enjoy every moment that you can