Hi Evie, Steve is so right that the Understanding Dementia course is wonderful and will probably answer a lot of your questions. I have now taken it twice, the first time for myself and the second time along with my sister so we could have a common language to be able to talk about my Mom. And Steve is also right about the two different strains of “genetically attributed” Alzheimer’s - but genetically connected ALZ accounts for less than 1% of diagnosed cases. The diagnosing of ALZ is, as you say, a differential diagnosis. So many doctors are hesitant to give a formal diagnosis because it ultimately can’t be confirmed until after death and having the diagnosis can be so frightening to a family and a patient. As for definitive testing, Columbia University has developed a spinal tap test that can measure tau and amyloid in cerebrospinal fluid, but its diagnostic capability is limited by the difficulty of creating a control group.

For me, taking care of someone with an ALZ diagnosis is all about behavior/symptom management. And just because the collections of symptoms that your own loved one presents may have lots of overlap with other people, no one person is going to have an identical “treatment plan” or trajectory to anyone else. Since there is no cure and because there is no way to know if the medications available are actually slowing down the progress of the disease, the only thing we can do for our loved ones is to find ways to help them stay calm, safe, as engaged as possible, and seemingly happy or content. As the brain shuts down physical and cognitive abilities, we make the adaptations we can and learn to live with new limitations. Sometimes, the manifestations of the disease are more than we can handle mentally, emotionally or physically in our homes and placements in skilled nursing facilities or memory care facilities are necessary. But everyone is just managing the symptoms. One of the things I love about this community is that there is no judgement about decisions people make, either to keep their loved one at home or to have them live in a facility. We are all doing what we can do with what we have and are supportive of that.

I hope you can find some peace in all your questions- times of transition like you are going through with your Dad moving to a LTC facility tend to bring up lots of “What If” questions, a lot of which don’t have definitive answers. Sending you so much support and so many hugs. You will make it through this transition and into a new chapter.❤️

We were told the meds really don’t help, possibly slow down the deterioration. Clinical trials maybe an option.

Evie, shame you joined us after the current UTAS Understanding Dementia programme https://www.utas.edu.au/wicking/understanding-d... was underway. The next one starts in July.

I think it would help with your query. My recollection from a couple of years ago is that there are a couple of forms of dementia that may be relevant. There is a genetic strain where a specific gene defect has been identified that is associated with a high probability of developing dementia. It can be tested for. Familial happens where a family tree has some pre-disposition that isn’t genetic. Perhaps one of our participants who is doing the current programme will have taken notes more diligently than I and will be able to be more specific.

With around a hundred different types of dementia to choose from, and probably more to come so long as people have research careers to sustain, picking the exact one for each individual is way above the pay grade of most doctors. It is obvious from reading posts here that many diagnosing doctors have failed to explain clearly the difference between dementia and Alzheimer’s disease, let alone screen successfully for any of the rarer forms.

Fortunately, for families affected, if the choice between vascular dementia and the rest is successfully made then the treatment options seem to be very similar.

My wife followed her mother at exactly the same young (57) age. Those two facts are sufficient to put a question mark over our daughters’ futures. They are both now within 10 years of D day and have both chosen so far not to be tested. I suspect they may think differently as they get closer to the age IF they are considering making any major changes in their lives. Otherwise, it seems to be knowledge that they would consider a burden rather than a benefit. I totally get their point of view and respect and support their choice. S.

The one test my husband’s neurologist said is most definitive is a pet brain scan. That can determine if there is amyloid plaque in the brain. If that is positive, it is most likely Alz. It is a very expensive test and insurance doesn’t cover it. My husband had it done as a requirement for the clinical trial he was entering. The trial paid for the test. In fact, they wouldn't have accepted him into this particular trial without the plaque.

As far as is it a good idea to know if you are a candidate for Alz, I would say no. Since at this time there really isn’t anything that can be done to prevent it, why make yourself crazy. Eat a healthy diet, exercise, stay active and leave the rest up to God.

Hope your day is filled with Light, Love and Laughter.

Thank you for sharing...very helpful.