After 3 years of investigation and tests my husband was diagnosed with Lewy Body Dementia 6 months ago , his health has deteriorated rapidly over the last year and he ticks every single box for LBD I’ve read all I can and been horrified at the course it takes but not told any of this to my husband . Every day/ week seems to bring something new and different to tick off until I had just about a complete list of most things lbd patients experience . Just recently however he had a DatScan and apparently this didn’t show the take up of the dye that it would have with LBD , So the consultant is talking about changing the diagnosis to unspecified dementia . This is where I’m confused and scared if EVERY box is ticked for LBD how can I just turn a blind eye to it , when in the last 6 months I’ve spent time learning about it and know that it can be one of the most rapidly declining dementias out there with terrible physical illnesses added in there . If I ignore this and his life is shortened more so than any other dementia I will feel like I’ve been robbed of special time with him because we’ve not said our last goodbyes not planned and plotted how the future goes etc . From knowing how life was going to be , and don’t get me wrong I didn’t want LBD. ( I’ve cried and screamed day after day ) to not knowing what , how , when , why ,,,again is seriously sending me more than a little crazy . Does anyone have any light they can shed on Unspecified Dementia please . Thank you for listening xx julie. X
Totally confused
- Thread starter Joolie58
- Start date
Hello @Joolie58 and welcome to Talking Point
Unfortunately it is quite common for doctors to not be sure exactly what type of dementia someone has. My OH ticks every bx for FTD, but it doesnt show on tests and I have been told it is not FTD. He is currently having tests to find out what it actually is.
Most types of dementia have very similar symptoms, just in a different order and sometimes with symptoms that typical of a particular type of dementia eg - hallucinations are very common in LBD, but they can happen with other types of dementia too, just not so commonly. Other physical problems like incontinence, mobility decline and swallowing problems are later symptoms of all types of dementia.
Every single person who has dementia will have their own particular journey. Even if you know exactly what type of dementia someone has you cannot predict exactly what symptoms they will have, whether they will need medication and, in particular, how long it will last and how long they will live. It is impossible to predict and plan for the future, im afraid. You feel that you are just about getting a grip on the presentation and then it suddenly changes! So, you see, you have to learn to be flexible and respond to the symptoms that you see at the time and not worry too much about what may happen in the future.
It is best to enjoy life as it is and grab all opportunities for you and your husband to enjoy life while you can. Make the most of the time you have (however long that is) and do not worry about not having said goodbye, it will become obvious when that time is reached.
Unfortunately it is quite common for doctors to not be sure exactly what type of dementia someone has. My OH ticks every bx for FTD, but it doesnt show on tests and I have been told it is not FTD. He is currently having tests to find out what it actually is.
Most types of dementia have very similar symptoms, just in a different order and sometimes with symptoms that typical of a particular type of dementia eg - hallucinations are very common in LBD, but they can happen with other types of dementia too, just not so commonly. Other physical problems like incontinence, mobility decline and swallowing problems are later symptoms of all types of dementia.
Every single person who has dementia will have their own particular journey. Even if you know exactly what type of dementia someone has you cannot predict exactly what symptoms they will have, whether they will need medication and, in particular, how long it will last and how long they will live. It is impossible to predict and plan for the future, im afraid. You feel that you are just about getting a grip on the presentation and then it suddenly changes! So, you see, you have to learn to be flexible and respond to the symptoms that you see at the time and not worry too much about what may happen in the future.
It is best to enjoy life as it is and grab all opportunities for you and your husband to enjoy life while you can. Make the most of the time you have (however long that is) and do not worry about not having said goodbye, it will become obvious when that time is reached.
I have to endorse what has been said by Canary.
I am in a similar boat to you @Joolie58, in that my wife's diagnosis has gone from mixed 'Alzheimer's/Vascular' to 'Alzheimer's' to 'Dementia of uncertain aetiology with considerable vascular element'. Like you I ticked the checklist of symptoms and thought my wife was classic Alzheimer's. Now, despite the changing diagnosis I have just accepted 'Dementia' and live life like each day could be the last for us.
The truth of the matter is that the different types of dementia may present differently and may progress differently due to initial differences in the brain pathology. However, as the various diseases spread through the brain symptoms become more common to all. This may be why there can be no definite diagnosis without a post mortem. There is an old saying along the lines of 'if you have met one person with dementia, you have met one person with dementia'. Every case can be individual.
It's tough as there is an element of control lost if we can't plan for a specific type of dementia. However, if anything unexpected or beyond our abilities happens TP is always here with it's experienced and knowledgeable membership as a first stop for advice.
I am in a similar boat to you @Joolie58, in that my wife's diagnosis has gone from mixed 'Alzheimer's/Vascular' to 'Alzheimer's' to 'Dementia of uncertain aetiology with considerable vascular element'. Like you I ticked the checklist of symptoms and thought my wife was classic Alzheimer's. Now, despite the changing diagnosis I have just accepted 'Dementia' and live life like each day could be the last for us.
The truth of the matter is that the different types of dementia may present differently and may progress differently due to initial differences in the brain pathology. However, as the various diseases spread through the brain symptoms become more common to all. This may be why there can be no definite diagnosis without a post mortem. There is an old saying along the lines of 'if you have met one person with dementia, you have met one person with dementia'. Every case can be individual.
It's tough as there is an element of control lost if we can't plan for a specific type of dementia. However, if anything unexpected or beyond our abilities happens TP is always here with it's experienced and knowledgeable membership as a first stop for advice.
Brilliant responses and my own mother's diagnosis has been changed twice so I have an idea of how confusing it can be. Maybe it is best if we can accept that our loved ones have 'dementia' and that it is a unique and individual experience. What else can we do but take it day-to-day and hope for the best and adapt to the situation when it changes anyway.
It's horrible but some days are better than others. Wishing you luck and remember, TP is a great support xxx
It's horrible but some days are better than others. Wishing you luck and remember, TP is a great support xxx
Hi thanks for your reply . I totally understand what you were saying in the message and after getting myself into a real old state about the change in diagnosis I think what I need to do is take a deep breath and step back from the future and enjoy the moment . Sometimes we get so wrapped up in making plans that we waste the here and now . I guess I panicked a lot as well as I’ve always been a ‘facts’ sort of a person through my life tell me the facts and I can look at them internalise them and move on . With Dementia I’ve found there are no hard and fast facts whatever’type’ you’re suffering from everyone is very much an individual within my own experiences my Grandmother , Father and now my Mother have all suffered with Alzheimer’s but I would find it hard to write down possibly 5 constant similarities between them all . My husband is not even really a mixture of any of the three of them , so caring for them has definitely been their own individual journey . Thank you for taking the time to make me stop and reflect .
