Early Memory Loss Lecture

concerned_sister

I live in Orange County, California. Yesterday I took my brother to a lecture at the local Senior Center. The lecture was titled "Early Memory Loss". When we went to visit the senior center in June, this was on the calendar for July and DB was interested.

I spoke to him this weekend about going to this Monday, per his prior request that we go. He seemed a little confused about this being a lecture, as opposed to a on-on-one appointment he had or some test he needed to take.

I assured him it was a lecture, and that I imagined there would be a question and answer opportunity, and that maybe he would meet some folks in the community dealing with the same issues.

I was wrong.

Though many of the slides had the puple banner logo at the right bottom saying Alzhiemer's Orange County, the speaker was not representing that group. I figured ok, but her mateirials were probably blessed by that group. I was disappointed. She did start out saying that memory loss isn't necessarily a 'normal' part of aging, and it can be a sign of depression, and various other treatable reversable causes. She did acknowledge that some folks are genetically predisposed to dementia, but these are the things you can do to prevent memory loss…

Let's say there were maybe 50 slides. Maybe on ten of them her phrasing was that these things improve your odds or reduce your risk. Most of the others this phrasing was gone, leaving the impression do these things and you will not have memory issues. On one slide she even used the words she guaranteed you would not have memory issues.

I did not want to be disrepectful and call her out in front of the group. Most of what she was saying coincided with 'best practices' as I've heard from Iris which can slow the progress of dementia, but her guarantee implied a cure.

I tried to speak to her one on one afterwards to encourage her to use more conditional words. My fear is that folks with Anosognosia, would have a take away of see I told you so.

My brother was eager to leave and did not want to stand around waiting for others to exchange comments with the speaker. On our way out to the car, I did tell him that I wanted to speak to her about those who were genetically predisposed etc. DB talked about the need for him to get more sleep which we are already addressing. I reminded him of the 'best practices" we already discussed months ago, and that I complimented him on re diet, exercise, socialization etc.

I heard from Younger Brother this morning. DB was talking about the lecture he heard and that his memory issues would go away if he followed her advice. Quoting DB he said that I was skeptical.

I'm not happy with this. I've contacted the senior center this morning to get the contact info for the sponsoring group. I'd like to speak to them about how the material was presented. We're likely to get DB's PET Scan results tomorrow. I don't want him to have unrealistic expectations and this will now crush that…or worse that he poo-poo the test results.

I'm curious if anyone else has thoughts on this.

jfkoc

Which Senior Center did you go to?

Iris L.

Hello CS. I'm glad you posted, because I have many thoughts. I am very familiar with the OC Alzheimer's Association, or I should say I was very familiar about fifteen or so years ago. One of the educators was instrumental in encouraging me to be assertive in seeking answers from my neurologist. I attended several of their large events. The events are more directed towards caregivers, family members and the general older adult population than towards PWDs. Unfortunately, I cannot recall that educators name, but she was EXCELLENT. I suggest that you call the local chapter Helpline and ask to speak with the Early Stage Coordinator. That was her title. I don't know if she is still there.

As far as Best Practices go, I want to clarify. Best Practices were presented to me as a way to prolong the early stages. I am careful not to say that Best Practices will slow the progress of dementia. What's the difference? One is a promise, and the other is an aspiration. We aspire to prolong the early stages. We hope that these lifestyle habits will help us. I believe that they do. Best Practices have helped me and others. But there is no way that anyone can say that following Best Practices will definitely slow down one's deterioration in brain pathology.

One of the concepts that I learned from attending many lectures put on by researchers in the dementias is that the focus will be more on prevention over cure. They had determined that about half of PWDs have known risk factors. So, ameliorating the risk factors should decrease the prevalence of dementia on the future.

My personal opinion is that lectures such as what you attended are not meant for PWDs. Even if they do not have anosognosia, their brains are unable to follow the nuances of all that is discussed. It's like having an elementary school child attend a college or even a high school lecture, they just cannot follow and comprehend the way it is meant. Your DB listened and heard that if he followed Best Practices, his memory issues would go away.

As far as a PWD having unrealistic expectations, what does this mean? The expectation is that they have a terminal brain disease which will take them out in two to twenty years, during which they will become increasingly dependent upon others for basic needs. When I first heard this about myself, I fell into a deep depression. Should I just give up and let nature take its course? It took me nine long months, but I eventually came out of the depression, because I decided I was not going to let nature take its course. I was going to FIGHT for my life! I decided that if I had dementia, I was not going out like a victim. Meaning, I was going to learn and do whatever I needed to do for myself. So here I am today, fifteen years later. As it happens, I do not have Alzheimer's Disease. But I do have neurocognitive issues that I deal with. I am still fighting for my life!

One of the things I did while I was in my depression was to read about other people with a terminal diagnosis. What were their thoughts? These were mostly people with cancer or ALS or HIV/AIDS. I learned that they mostly wanted two things, to spend time with their loved ones, and to keep their normal routines and lifestyles. So I decided that this is what I would look for for myself. I learned quite a lot more about living with memory loss and living with declining health from the members here.

I do think that PWDs can be offered hope. Hope that they will be cared for and kept safe and not stressed out. Hope that they will not be demeaned and laughed at or yelled at as they deteriorate. Hope that their needs will be met as they change.

CS, I believe you are doing a great job in supporting your DB and DSIL. But, IMO, you do not have to discuss the details so much with him. Even if he appears interested and like he is following, his brain is being overloaded. He is not going to be cured, but he can have a "*" life with dementia. The "*" is for whatever he wants to make of his life now.

I attended a Memory Cafe with PWDs. Although they could all conversate, it became obvious to me that they could not keep up more than a basic, shallow conversation. This is because they could not follow more than a few sentences, nor go back and forth. They had dementia, not MCI, like myself. I had planned to resign from the group, but COVID came and the group was disbanded.

There is a wonderful Alzheimer's Family Care Center in Huntingon Beach. I visited an open house there a few years ago. You might visit and see what you think. I gather that your DB likes to stay busy. He should stay busy, with failure-free activities on his level.

Keep up the good work, CS!

I want to add that my mom had a 5% chance of living five years with her type of cancer. Of course we never told her that. We just loved on her and took care of her. Although she was terminal, she was not sick, until the very end. We didn't discuss cancer in front of or to her although she knew what she had.

Iris

Iris L.

Let me clarify about expectations. The PWD has a terminal illness. Depending upon how strong the anosognosia is, the PWD may or may not fully comprehend the prognosis and implications. This is a time to make wishes known, if possible. But if the PWD believes that following Best Practices or any other tactic will make him better, what is the harm? No one is going to say, "Be realistic, you're dying!" Let the PWD enjoy his or her life, for however long it may be. This is my opinion. This is what I am attempting for myself.

Iris

concerned_sister

Jfkoc, the senior center is located in Laguna Nigel.

Iris,

With your long thoughtful post, I'll be scrolling through and answer your points as I come across them.

Just to reiterate, though the slides had the OC logo on them the speaker didn't represent that group. It was a local group with diversity in it's name, but I didn't recognize the full name of the group.

Thank you for restating the aspirations of best practices. I know I didn't get it quite right in my paraphrasing. The speaker crossed a line when she went as far as using the word guarantee. (You were good at pointing me to sources such as your mentor's testimony.)

Re the intended audience, I saw it as a subset of the local Sr population. I was surprised DB asked to go - this had been his suggestion not mine. I did hope he might meet a "peer". I was kind of watching him for signs he wanted to leave early. I didn't expect he'd have the required attention span, but did like the idea of him liking to be at the Sr center as a place he could spend time if he takes a disability retirement.

I guess in my mind when I referenced expectations was him having the thought that the memory issues would disappear and no need to consider retiring. Thank you for sharing your thoughts. They're worth pondering.

"There is a wonderful Alzheimer's Family Care Center in Huntington Beach. I visited an open house there a few years ago. You might visit and see what you think. I gather that your DB likes to stay busy. He should stay busy, with failure-free activities on his level." I know of that facility. I've driven by many times and have a relative within walking distance - at least I believe we're thinking of the same place. Yes DB likes to remain busy. We'll have to see if there are other options that are a shorter commute.

I have more to say but keep editing myself since this is a public forum. I'm thinking his PET results will guide some decisions in the near future.

Thank you for sharing about your mom. I'm still dealing with my S.O.'s scary diagnosis.

Back to DB. Iris you pose an interesting question, but there's still the matter of accepting he can't drive, can't handle is own finances et cetera. I guess we're as real as we have to be with the day to day and more vague about how the future will unfold.