Newbie!!

[kmc]

Hi,

I have no idea how to start this so I'll just start!!

My 50yr old sister was diagnosed last week with Early onset Dementia. Obviously, as a family we are all devastated. Not helped by the fact that she now lives in Canada!
As awful as this may sound, I can't help but be a little worried about the possibility of this being hereditary, from the research I have done, I've found that there is more risk with early onset that it could be. We have no known history of dementia in the family but we know nothing about my Mum's side of the family. She has had no contact with them before she had children and we have no history of them. This is such a difficult subject to broach with Mum, so I don't know what to do! I have two children of my own, so have a duty to them to find out as much as possible, but how do I do that without mum thinking it's a finger pointed at her?
Sorry if my post doesn't make sense. So confused
Any advice would be very welcome.
Thankyou, kind regards. kmc xx

 

[tc40]

Improvements in quality of life in less than 6 months

I have been caring for a relation in his mid 50s with early stage dementia for some time now, and like yourself I am also worried about the possibility of this being hereditary so I decided to do some research and try some of the suggestions out there, during the first 18 months we tried all the usual suggestions, puzzles, games, drawing, painting, memory tests, gardening, new diet and exercise these were enjoyable but the symptoms continued, we also tried the more challenging suggestions such as learning a new language and playing an instrument, we gave up on the language after a week this seemed to make him more frustrated especially as he had not been taught any languages as a child, learning to play a keyboard certainly created an interest and was a pleasant experience however none of the tunes were learnt all the way to the end. Almost 6 months ago we were in a long (long then was 4 minutes) conversation about a place of work 40 years earlier, back in the 1980s, he talked rather patchy about a motorcycle he owned at the time a silver Yamaha 1100cc, he went on to talk about seeing the same bike a few years ago at motorcycle show, this got me thinking that it would be a good idea to write all these strong memories down as this was a great way to stimulate the part of his memory that like many of us we rarely use, at first I bought a blank book and entered the details, but this became confusing and patchy, so then one evening when I was looking for a birthday present for a friend I came across a company that made memory diaries that you could purchase by the year/decade a person was born, when it arrived it also had pages for adding photographs which we had many, plus for every decade from the year he was born there were picture memory joggers to help you remember that period in time along with music, artist, films, news events even prices all from that era, so for just a few minutes every few days we would sit and recollect moments from his past, within a few weeks this was now becoming addictive, and he would be recalling moments from all periods of his life and then searching for photos to place in the book, Today we have filled almost all the diary and have over 30 photographs in it, although he still occasionally muddles words up and forgets were he is some days, overall I it has helped him and myself in many ways, he is far more alert, doesn't get depressed as before and now other family members have more to talk about with him, they now actually know more about his past than ever before.
Sites such as Alzheimers.org constantly refer to keeping Journals and writing but sadly patients are not usually interested, so by making it fun and enjoyable as we have now his quality of life today has vastly improved. hope this helps.

Hi,

I have no idea how to start this so I'll just start!!

My 50yr old sister was diagnosed last week with Early onset Dementia. Obviously, as a family we are all devastated. Not helped by the fact that she now lives in Canada!
As awful as this may sound, I can't help but be a little worried about the possibility of this being hereditary, from the research I have done, I've found that there is more risk with early onset that it could be. We have no known history of dementia in the family but we know nothing about my Mum's side of the family. She has had no contact with them before she had children and we have no history of them. This is such a difficult subject to broach with Mum, so I don't know what to do! I have two children of my own, so have a duty to them to find out as much as possible, but how do I do that without mum thinking it's a finger pointed at her?
Sorry if my post doesn't make sense. So confused
Any advice would be very welcome.
Thankyou, kind regards. kmc xx

 

[kmc]

I have been caring for a relation in his mid 50s with early stage dementia for some time now, and like yourself I am also worried about the possibility of this being hereditary so I decided to do some research and try some of the suggestions out there, during the first 18 months we tried all the usual suggestions, puzzles, games, drawing, painting, memory tests, gardening, new diet and exercise these were enjoyable but the symptoms continued, we also tried the more challenging suggestions such as learning a new language and playing an instrument, we gave up on the language after a week this seemed to make him more frustrated especially as he had not been taught any languages as a child, learning to play a keyboard certainly created an interest and was a pleasant experience however none of the tunes were learnt all the way to the end. Almost 6 months ago we were in a long (long then was 4 minutes) conversation about a place of work 40 years earlier, back in the 1980s, he talked rather patchy about a motorcycle he owned at the time a silver Yamaha 1100cc, he went on to talk about seeing the same bike a few years ago at motorcycle show, this got me thinking that it would be a good idea to write all these strong memories down as this was a great way to stimulate the part of his memory that like many of us we rarely use, at first I bought a blank book and entered the details, but this became confusing and patchy, so then one evening when I was looking for a birthday present for a friend I came across a company that made memory diaries that you could purchase by the year/decade a person was born, when it arrived it also had pages for adding photographs which we had many, plus for every decade from the year he was born there were picture memory joggers to help you remember that period in time along with music, artist, films, news events even prices all from that era, so for just a few minutes every few days we would sit and recollect moments from his past, within a few weeks this was now becoming addictive, and he would be recalling moments from all periods of his life and then searching for photos to place in the book, Today we have filled almost all the diary and have over 30 photographs in it, although he still occasionally muddles words up and forgets were he is some days, overall I it has helped him and myself in many ways, he is far more alert, doesn't get depressed as before and now other family members have more to talk about with him, they now actually know more about his past than ever before.
Sites such as Alzheimers.org constantly refer to keeping Journals and writing but sadly patients are not usually interested, so by making it fun and enjoyable as we have now his quality of life today has vastly improved. hope this helps.

Thank you for that inspiring story . I was watching some fireworks last night and filmed for a while so that I could send it to my daughter in Uni and did think about sending it to my sister, but the quality isn't that good and I'm not sure if it's a bit too soon?!

 

[kmc]

Welcome, and sorry to hear your sad news. My husband also has eoAD in his fifties and my family similarly worried. It is devastating news. Here in the UK the NHS do not test relatives. I was told that there was no point in giving people a percentage risk. It does nothing to alleviate the worry and may make it worse. Over the last couple of years I have gradually seen the wisdom in this, though that is not to say that it is not hard. Different people have reacted differently, some more affected by worry than others. All we can do is live well, and encourage a healthy moderate lifestyle in our children. But I too wish I had a magic wand to make the worry go away. Sympathy!

Thanks. Maybe it is a bit of a knee-jerk reaction! It's also frustrating to not know anything about the medical histories on my mum's side of the family. Have got an appt. with my doc on Monday to discuss it, but if I'm told that they won't test for it, I'll accept that and concentrate on the 'here & now'!