I had my first appointment with a neurologist almost six weeks ago. I am due to go back in two days. I have had a MRI, carotid ultrasound and blood work. I know I am in the early stage of dementia but I do not know what type, etc. I would like to know what specific questions I should ask the neurologist on my next visit because I don't want to miss some important detail he may just "forget" to mention. My friends are my caregivers and while I know everyone is different, etc., I really need to make some serious plans for my future, etc. Any assistance anyone can give would be greatly appreciated. Thanks much! PS: I am a 74 year old female.
I might also ask if he has much experience with dementia cases. The one that I took my LO concentrated on that. He diagnosed my LO with dementia based on her medical records, info from family and office evaluation. Her Primary had also diagnosed her. What he didn't know was what was causing it. Later, she was diagnosed with Vascular Dementia.
I hope you'll get more responses on this. I might also seek a consult with an Elder Law attorney to make sure your affairs are in order and that you have your Durable Power of Attorney, Healthcare POA, etc. completed and that originals are with those you have appointed for safekeeping. Please let us know how things go. I hope you can find the answers you are seeking.
My own experience has been that although neurologists and neuropsychological testing can be helpful for establishing a diagnosis, they are not that helpful in planning for the future...or even figuring out how to manage day to day challenges of living with dementia. (For that, I recommend a support group such as this one!)
The big picture is that if they are quite sure you have some form of dementia, you need to start planning for the following:
- Do you need help now, and if so, what are your options for meeting that need?
- People with dementia often lose insight on their abilities or on what might be unsafe. Who can monitor that for you, and who will intervene to help you when it's time to stop driving, or let someone else manage your finances (you may want to allow someone to start supervising sooner rather than later) or allow more help in the home? Decide who that might be and express your preferences for when and how they should intervene.
- You should assume you will eventually reach the point that you cannot manage the "instrumental activities of daily living"; these are the self-care skills we learn as teenagers that are necessary to live independently, they include things like managing shopping, cooking, finances, transportation, medications, and home maintenance. When you are no longer able to manage those, what are your options? (Family often takes this on but sounds like that's not an option for you.) Will you have to move to a more supportive housing situation?
- Most people with dementia will eventually decline further and require help with basic activities of daily living. These are the life skills we learn in early childhood, like walking, getting dressed, getting to/from the toilet independently, feeding oneself. How could those care needs be met? (This often requires placement in a facility, unless you have the funds to pay for 24 hour care at home.) Your friends will probably not be able to provide this degree of hands-on care, but you will need them to coordinate your care and supervise to make sure you are well cared for.
There is also the issue of planning ahead regarding your medical care and discussing what your preferences and priorities would be, once you'd declined further. At a certain point, a lot of "usual medical care" is unlikely to benefit and often causes stress or harm, but the medical community will keep doing what it usually does until someone says it's time to change the focus of care. You need to prepare your POA to do that. TheConversationProject.org has a conversation kit for people diagnosed with dementia, and there is also a new advance directive designed for dementia at dementia-directive.org.
In general, it's best for anyone with a dementia diagnosis to get their healthcare power of attorney involved as early as possible, so that this person becomes familiar with your health situation and what's important to you.
I'm so glad you have friends willing to help, but I will say that I've seen friends in this position and it often becomes a heavy lift for them. (Obviously, it's tough for family members too, as many in this community will attest.) Your healthcare power of attorney will likely have to make medical decisions for you for years, and your general/financial power of attorney will make decisions related to your care and housing for years as well.
You can make this job much easier for your friends by planning ahead as much as possible right now. I would say a good geriatric care manager will be better at helping you plan than the neurologist will. Reviewing your financial situation & planning with a capable elder law attorney is important soon.
I will finish by saying that this is a lot for you to think about right now, and I'm sorry for that. You can and should give yourself a little time to digest this new diagnosis and take care of whatever emotions are coming up. You don't have to do all this planning this week, or even this month.
But, don't wait too long, and make sure you address at some point in the next several months, while you are still able to do so. Your friends and powers of attorney (and your healthcare providers!) will be very glad you did.
good luck and take care.
Did the neurologist order a PET Scan? That would indicate the type dementia - but Aricept kept my dad from progressing during the 7.5 years I tended him. Everyone thought it was funny that at age 82, he had Early Onset Alzheimer's.
The problem with giving it a label, is you will tend to overcompensate with worry. It sounds more like "age related memory loss" than dementia because your question is so well articulated.
I always got copies of reports, read them, looked up terms I didn't understand, and made a list of questions to ask.
But first, what was the purpose of your visit? Was it to determine if you have dementia? Or perhaps do think you had as stroke, and if so, did the MRI provide any indication of one? Did the carotid US show anything suggesting you might be in danger of a stroke? Or anything contributing to dementia?
I.e., what was the reason for the tests if not to address possible dementia, and what did each of the tests show in terms of that, or of any other issues of which you should be aware? And if there are concerns, what are the options for treatment, and how serious are the conditions?
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