My mom has Primary Progressive aphasia and you cannot understand her when she speaks. How do we tell her we also suspect dementia?

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My mom has Primary Progressive aphasia and you cannot understand her when she speaks. How do we tell her we also suspect dementia?

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Well my mother with Primary Progressive Aphasia, ( we suspect dementia0
Is crying before christmas showing me the old neurologist diag. papers; She wants to go to another one ;I tell her I understand and she wants to be diagnosed for dementia; I have a feeling a diagnosis is needed for her Long term care policy to be used soon ; she knows everything is going badly.
Really strange she is a bucket of water for 2 weeks then I can see a clear mind for the day really perplexing.

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I think it depends on the individual case. When my father was diagnosed with AD, it was the advice of his care team that he be told and involved with his health care decisions as long as possible. We had a family meeting with a geriatric care specialist who told all of us what to expect and gave all of us counsel on how to interact with my father. This also let us retire the car keys from him and, deal with a few other safety issues with the support of the care team. He was started on Aricept and did well for a number of years after diagnosis. My stepmother was the driving force in getting him to a physician, in involving geriatric specialists and setting up the family meeting. I look back now and realize what a good job she did. With my mother, I can't get her to a doctor, I'm afraid to say the D word to her and my out of state siblings are non supportive and in denial. I think maybe by the time she is diagnosed, there won't be a point in telling her. I have read that with some forms of dementia, medication can maybe delay progress -so to me, that's a good reason to try to seek early diagnosis and be able to involve the patient but it's just not always possible. I think sometimes early signs are not that clear and consistent, are thought of as just normal aging things and not picked up on until viewed in the rear view mirror. With the PPA, your mom must be under the care of a doctor so I think you should call her doctor and discuss your concerns and go from there. You can also talk to a geriatric care specialist who could give you some thoughts on whether disclosure to your mom, who has limited communication capability to discuss her fears and concerns, is a good idea or not.

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Jeanne, I honestly don't think in a case like this there is a one size fits all answer. Where as you wouldn't discuss it with your mom, I know that through out my moms life she was very independant and in charge type of person. When the changes associated with dementia started getting worse, she wanted to know what was wrong with her.By telling her and keeping her "in control" of her health issues she is able to retain her feeling of independence and her pride. I think that honesty is called for, even if it has to be tailored to fit each case.

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tltimme, which part of my answer do you disagree with? That I wouldn't tell my mother? Or that I did tell and do discuss it with my husband? Or that each case needs to be judged on its own merits?

If your view is that what was appropriate for you mother is also best for everyone else who gets dementia, then indeed, we do disagree.

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Thank you all, Mom does know she gets confused and loses things etc.. She's crying for things one usually will just be mad or concerned about, thats why i'm trying to see what others would do and why. She is on Zoloft for depression and
seeing a speech therapist we bought her a speech and language binder and frequently show her how to use it but its almost like she wants to make it harder on everyone,seems strange but sis and I are realizing a bit of manipulation is getting to a lot of manipulation. she can say some phrases and write but getting bad at writing. My father found out in 2002 abt. him having ALZ and he went downhill right away never said hardly a word for 7 yrs. he died because he couldnt swallow god awful way to go, Mom thinks this is what will happen to her too, so she wants to "end it" I don't want to cause her any stress..Long road is right, but sometimes their is a fork in the road. Thank you everyone.Leslie

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Have you spoken with the speech therapist about a touch screen board that will allow your mother to communicate as much as she can? After that, the doctors and therapists can evaluate your mother with greater accuracy. We use touch screen boards for students in elementary school through college. However, if you cannot find or afford one, make one through using free graphics that indicate faces and feelings, items your mother might want or need, and familiar objects. Try to laminate them and use Velcro dots to attach them to the pages of a notebook or board. Good luck. There is so much that can be done to help patients with aphasia. Don't give up! :) Try dealing with the aphasia first and then consider what needs to be done about possible dementia. Rebecca

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My 79 year old wife has serious dementia. I can see no value in talking to her about this. In fact, I see it as cruel to do so. She is also incontinent. I simply handle the situation. She knows, so why would I want to bring it up?

As a practical matter, a person suffering dementia wouldn't remember such a discussion anyway.

Please, ask yourself what can be gained by such a conversation.

Planeman

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She may not have dementia. Aphasia is a specialized kind of stroke. What you may think is dementia could be caused by her aphasia stroke. Please contact an Aphasia center. There is one in Baltimore, MD. They work with these people and give them back their voice and life. If you need further info on aphasia I'll be happy to provide it and or the address/phone number for the center in MD.

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You dont tell her, at least I never told my Mom. I said this once before but you know those days when you feel happy or sad but you have to think of why you do? Its like you have something on your mind and then you remember "Oh ya, Christmas is coming" or "oh ya, I might lose my job" Its those feelings that stay with them but they cannot remember why. My sibling once told my Mom at the beginnings of her dementia/alz, that she owed her money and that she make a mistake not putting her in charge. Ok now here we are years later and my Mom once in a while will start to cry and mutter "mistake" to me. Oh it infuriates me to no end that she planted this in my mothers brain and my Mom cannot express things. Why tell your Mom that she might have it? What good will it do, no good, thats what. When my Mom said she forgots things in the beginning and I told her I do too, she laughed and said "oh you always make me feel good" and to this day I still make her feel good, we are "both" forgetful in a funny way, thats all we have/had ever discussed. Just keep your Mom happy and dont plant things in her mind, they will stay there and make her a sad person thru her illness at times. Just my opinion, its a long road :(

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Dementia comes in all shapes and forms and PPA is one form. In the beginning stages it basically affects speech and so communication is an issue. Does mom understand you when you speak? How is moms at reading? Have you tried different forms of communication such as flash cards, index cards or even the computer? Over time she will have some memory problems- if that is the case now, if she knows she is also having memory problems what will that mean to her? Often times people with memory problems forget that they have them- so before telling her you need to understand and ask yourself what purpose will this serve?

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Why not have the doctor explain this to her, same as s/he would to another patient? Your mom must have noticed she is confused sometimes; the explanation (in that moment, at least, and whenever she is able to recall it) will make her feel a little lss nuts, I would think. Good luck to you all!

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I disagree with jeanne, when it was obvious that my mom's forgetfulness and trouble speaking was more than just aging, we had a very frank discussion about what could be causing it. My brothers and I want and encourage my mom to stay involved with her health decisions as much as she is able. I would suggest contacting her doctor with your thoughts and getting her and appointment w/her doctor. He/She can probably administer a mini-cog test and then you can plan were to go next.

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First of all, why would you tell her that? That is a serious question -- not an implied criticism. Once you are clear in your own mind what you want to accomplish I think you will have a better idea of how to proceed. What do you hope will be better after you tell her this?

I would never use the D word in my mother's presence. I talk freely with my husband about his dementia. Each person is unique and what is best for each can't be pulled out of a how-to manual. You know your mother best. Once you think through why you think she should know your suspicions then you can think about how to tell her in a way that best serves your reasons and gives the best chance of meeting your goals.

How does your mother communicate with you? In writing? Will she be able to share her reactions and feelings to this message you deliver?

Best wishes to you as you make this decision.

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My mom has Primary Progressive aphasia and you cannot understand her when she speaks. How do we tell her we also suspect dementia?

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