Learning about Alzheimers

[Starsky]

I just thought I'd post this for anyone who is dealing with dementia.

It is a presentation by an expert on Alzheimers and Dementia that my wife and I attended a few years ago. It has been hugely helpful to us and I thought of everyone here on ER when I was sharing it today. I haven't found a better guide anywhere. It is just the powerpoint part of the presentation, but it's pretty self-explanatory.

It's too big to attach, so I'll leave a dropbox link up for awhile... Link to Alzheimer's Presentation

 

[O2Bfree]

Great presentation! Lots of valuable information on how to interact with different types of Alzheimers folks in the section about the Senior Gems.

Thanks for posting that!

 

[gauss]

Just starting down this road with DM.

Diagnosed dementia several years ago by GP, going to try to get in with a neurologist etc to see if is actually Alzheimer's.

Very timely.

Thanks
gauss

 

[Human]

Thanks for this.

 

[TimeMeasure]

Thank you for posting this, Starsky. Had seen some of Teepa Snow's material before, but not this presentation which pulls it all together.

One point which doesn't often get made, but is probably worth mentioning to folks who are just learning about it, is that Alzheimer's is effectively not just "one disease," but a number of variants under one umbrella. Any list of symptoms will likely not apply uniformly to everyone with the disease, and the progression of the stages can vary significantly - part of why it is so difficult to predict timeline and staging. Can recall reading a comment by a medical professional to the effect that "when we eventually understand Alzheimer's, decades down the road, we'll probably find that it's not one disease, but twenty different diseases."

A few other resources which folks might find useful:

Thoughtful Dementia Care: Understanding the Dementia Experience

Probably one of the best descriptions of what dementia is like from the perspective of the person who has the difficulties. Very instrumental in changing one's understanding from "they're basically normal and certain tools + effort can help them live normally" to a different perspective in which one "gets it" - i.e. understands viscerally the limitations in the person's abilities and cognition, and can adjust communication style to help them feel comfortable, and adjust perspective to achieve the most empathy.
​

The Selfish Pig's Guide to Caring

The humorous title partly refers to the fact that, to be a good caregiver, one also has to take care of oneself. Humor aside, though, this is a book by a caregiver who thoroughly "gets it" and has experienced all the difficulties involved.
​

Finally, the Alzheimer's Association in many, maybe all, regions offers free "Care Consultations." These are appointments one can book and use as wide-ranging conversations to cover whatever topics would be most helpful - medical, legal, financial, etc. - in consultation with a member of the association who has experience in advising on these topics.

 

[Golden sunsets]

Thank you so much for this. I have been dealing with this with DM for about a year. The progression seems to be speeding up of late. She is now in a residential facility and not adjusting well, despite excellent and caring staff. She keeps trying to physically leave. Sun downing is starting earlier and earlier. The most recent move occurred a couple of weeks ago after an episode of flight without proper outerwear and eventual involvement of the police. At least now she is in a secure facility. I found the gems explanation fascinating. I'm not sure where Mom is at the moment. Perhaps Amber or halfway between Emerald and Amber. Some of the techniques described depending on the stage come instinctively I think and others are not so obvious, so the Rec's are welcome suggestions.

I realized this week that there is a big new change in my attitude, one of acceptance and sadly..... Letting go. I see fewer and fewer excursions away from the facility in the future. We are planning one tomorrow at her favorite seafood restaurant on the ocean with relatives, but I'd bet it will be one of the last outings where normalcy will be the faned attitude of the group. I find there are fewer and fewer reasons to attempt to refocus her and the worst feeling of all (and one for which I feel real guilt), that of withdrawal on my part. I find it harder and harder to carry on a conversation, so visits are shorter. This is so depressing.


But I must remember that Mom is 93, has had up until very recently a wonderful life and has been a wonderful mother.

Sent from my iPad using Early Retirement Forum

 

[nativenewenglander]

I'm visiting a friend this coming week who is in the throws of dementia. He took a joy ride this week and was picked up by the police 20 minutes up the road. They took his license away in February, but he found a spare set of keys. His caregiver will now sell this car too.
There was much I didn't know about the condition and how to be more helpful. Thanks for posting it.

 

[Amethyst]

Perhaps interaction is as tiring for the afflicted person as it is for the visitor, so the shorter visits are OK with them.

T

the worst feeling of all (and one for which I feel real guilt), that of withdrawal on my part. I find it harder and harder to carry on a conversation, so visits are shorter. This is so depressing.


But I must remember that Mom is 93, has had up until very recently a wonderful life and has been a wonderful mother.

Sent from my iPad using Early Retirement Forum

 

[MichaelB]

In my experience interaction is mentally tiring for the visitor, for the afflicted person it's pleasurable but fleeting. No matter how long it lasts, soon after it ends there is no recollection of it. An extended get-together is mentally (and emotionally) challenging for the hosts because they have to repeat the same short conversation 10-20 times per hour.

What has worked for best for us is multiple family member visits. All are aware of the condition and take turns engaging. It is very pleasurable for the afflicted person, easier on the others, and usually leads to longer lasting visits.

 

[braumeister]

In my experience interaction is mentally tiring for the visitor, for the afflicted person it's pleasurable but fleeting. No matter how long it lasts, soon after it ends there is no recollection of it. An extended get-together is mentally challenging for the hosts because they have to repeat the same short conversation 10-20 times per hour.

What has worked for best for us is multiple family member visits. All are aware of the condition and take turns engaging. It is very pleasurable for the afflicted person, easier on the others, and usually leads to longer lasting visits.

Yes, this was exactly my experience. And for the same reasons, I don't think any visitor should feel guilty about keeping a visit short. Visiting five times a day or three times a week would be indistinguishable to the poor patient.

 

[MichaelB]

I realized this week that there is a big new change in my attitude, one of acceptance and sadly..... Letting go. I see fewer and fewer excursions away from the facility in the future. We are planning one tomorrow at her favorite seafood restaurant on the ocean with relatives, but I'd bet it will be one of the last outings where normalcy will be the faned attitude of the group. I find there are fewer and fewer reasons to attempt to refocus her and the worst feeling of all (and one for which I feel real guilt), that of withdrawal on my part. I find it harder and harder to carry on a conversation, so visits are shorter. This is so depressing.


But I must remember that Mom is 93, has had up until very recently a wonderful life and has been a wonderful mother.

So sorry you have to deal with this. It is a terrible situation and there are no easy choices. Just 2 comments.

For someone with declining cognitive function, an assisted living or memory care unit is a much better option than remaining at home. Regular meals, social contact and health care oversight is likely to extend the resident's lifespan compared with staying at home.

Visiting regularly and interacting with the caregivers is important. Facilities never have enough staff to satisfy all the needs, and caregivers are likely to favor / give more care to residents that have regular visits by friend or family that advocate for their care.

 

[MRG]

In my experience interaction is mentally tiring for the visitor, for the afflicted person it's pleasurable but fleeting. No matter how long it lasts, soon after it ends there is no recollection of it. An extended get-together is mentally (and emotionally) challenging for the hosts because they have to repeat the same short conversation 10-20 times per hour.

What has worked for best for us is multiple family member visits. All are aware of the condition and take turns engaging. It is very pleasurable for the afflicted person, easier on the others, and usually leads to longer lasting visits.

+1

While we were blessed that DM didn't have most of the severe issues many do it was still difficult. Some people seem to tolerate it better, at least externally.

DM remembered about 15-20 things from her life and could only loop through her old stories. My sister and I handled DM differently, sister got upset I didn't. Oh well. I thought I was doing better.

After the last time I saw DM, before she had to go to a nursing home, I felt funny at work. 911 was called, EMT's told me I'd had a stroke, sent me to a level 1 trauma center. The doc checked me and asked if I'dhad sex that morning, worked out, swam...) or had any emotional events lately. He suggested that I was having Transient Global Amnesia(TGA) and perhaps my last visit could be the trigger.

I know it was, my thoughts were "yeah I can still hear mom's voice, but I'll never be able to ask what she thought about something".

We really consider our family blessed that DM lived 92 years outside any facility and only a short time in one. The facility gave her some form of happiness in her last months. I recall DF saying he'd walked in one day and saw DM interacting with others in her same situation as if she was a child again. He said when he saw that he knew she was in the right place.

My thoughts go out to any that are suffering from this disease.