I am a full-time supervisor in a memory support (dementia) unit at a retirement home. AMA.

My grandmother is currently showing signs of dementia and/or Alzheimer's. She is constantly repeating herself, and just the other day she left me 3 desperate notes with her phone number just in case I needed it. She then proceeded to tell me that Ashley (my cousin) just bought a house (she's known this for over a year. The worst example, was at Christmas last year) when she was mixing up the grandchildren's names (30 year olds shes known for their entire lives). What is the best way to deal with this? Do I ignore it and just go along, or do I talk to her about it?

Edit. Punctuation.

First of all, I can't imagine how difficult that is to handle as a family member. Especially since she has plead to you for help. That must be heart wrenching. Is your grandmother living on her own? Does she still drive? Does family support her and visit often? My recommendation would be to discuss this issue with whoever is her power of attorney, which is typically one of her children, and explain your concern.

In terms of how to deal with her memory issues with her and situations that come up, it depends largely on an individual basis. Is your grandmom the type of person that is used to being active and in control of herself? If so maybe confrontation isn't the best thing. Trial and error is the best way. Sometimes reason or siting past experiences is useless, because they do not remember them. Work at it to the best of your ability in the moment and see how she responds. Every situation may provoke a different response. I recommend talking with everyone in the family, too. Have a family discussion of sorts to keep things consistent across the board. If there is absolutely anything else you are curious and concerned about with this, please do not hesitate to ask. It's a difficult thing and when it's not something you have exposure to, it feels foreign. Best wishes to you and your grandmother. Spend as much time with her as you can.

Thank you for your advice :) I recently moved in with her because "we needed a place to live" (My family decided it was best if one of us grand kids came to live with her, and we used my boyfriend and I going to school near her as an excuse to move in). She does drive, though not for long. She isn't very old, late 70's (so still a youngin' by many standards), but the deterioration I've seen in just a few months is scary. She has always been a very strong, independent woman, and I think confronting her would make her angry.

Oh yes strong independent women are tough cookies. That's wonderful you are living with her. You have that time with her to cherish and remember her for the rest of your life. I'm sure she loves it too.

As sad as it is, she calls me every morning, even though I live downstairs, to say good morning and tell me that she loves me :) She's the best. One thing she hasn't lost, is her ability to bake. She remembers every recipe by heart, and has taught me everything I know about baking.

That's amazing! Keep it alive in yourself :]

I was gonna ask you something but I forgot my question

You have no idea how often I hear that hahaha!

No question, but an anecdote I remember from a 'living with dementia' workshop.

Here's how to handle when your loved one says 'Did I tell you about ____?' and they have, maybe a dozen times already. Don't point out that they already told you, and don't lie and pretend that they haven't told you, because they'll catch on that you're faking it. Instead, just say, 'Tell me, grandma (or whoever).'

Really, they just want your blessing to talk and share, so cut to the chase and give it to them.

Pro-tip: if you work in sales or customer service and ever deal with someone grandstanding ('Do you know who I am!?'), this works there too. 'Tell me, sir...'

I love that tip!! Thank you I will definitely use it. It makes perfect sense an is very respectful.

What is the craziest thing you've heard come out of one of your patients mouths?

And is your job sad seeing a lot of people come and go?

The craziest thing I've ever heard... That's a tough one. The other day we had a non-sequitur - "My birthday isn't on the calendar it's July 18th."

"It's August, Anne."
"Oh, well I came here because I wanted to tell you that I want a bag of pretzels."

We have a lot of salad talkers and people that ask for their parents, actually. Once they read late-middle stage, people generally think they are children again and don't believe that their reflection is actually theres. We had a resident that we needed to cover his mirror because he would always try to fight his reflection.

I had a resident tell me she needed to tend to her 12 year old brother and she was 89 at the time.

salad talkers

Is that a person who has schizophasia?

Someone that has verbal diarrhea basically hahaha. Best way to explain it! Keep talking but make no sense.

Wernickes aphasia?

That may be the technical term, I'll have to look into that one. Thanks for informing me of it!

Residents name and her birthday. Protect PHI, this is very identifiable information.

[deleted]

You're nutty, did you read the comment I replied to? Name and birthday. You could lose your licensure, just edit the damn thing.

That isn't her real name.

Generally I have become desensitized to the whole process. In fact, some residents I truly loved as my own family that have come to pass have not phased me, at least not perceptibly. It is almost a "business as usual" type thing. It is a fun job more than depressing, actually. This job has provided me with a more uplifting approach to death. It has taught me that someone could be completely vibrant and vital one day and the next, gone. That spirit doesn't just disappear. It is still out there somewhere.

Thank you for that awesome answer. That was way more than expected and gave me a lot more insight. Your answer is much appreciated!

Absolutely my pleasure! Thank you for your curiosity and interest. It is talked about so much in our media but I feel there is a face to dementia but it is Way more multifaceted than how it's portrayed.

What's the best part about your job?

Since I have been working here for 6 years and have had many jobs in between those years and quit, it is a given that I love it. My job is extremely rewarding in so many ways. The residents are like surrogate grandparents. They love you and recognize you, even though they can't say it. One of the best moments of my job is when residents with late stage dementia recognizes me. One day, I was walking with a man that could barely formulate a sentence due to his late stage. He was being bothered and heckled by other residents because of his confusion. We sat at the end of the hallway to avoid the chaos and he looked at me and said, "You know, you're a really good person." I still get chills from that.

From a psychological standpoint, it is interesting to see each personality deteriorate and, because dementia does not have one face, it is different with everyone. you learn a lot about a person this way. But, there is still a human quality and something that keeps them unique to everyone else.

Not to mention, I have so many hilarious stories. Residents peeing in so many places you could never think of. I could go on for hours.

whats the youngest patient you have?

The youngest patient we have ever had was 69 years old and she was late, late stage. Honestly, it is probably the saddest patient I have seen. She probably could have been diagnosed in her 40s and she was totally gone. She loved babies and you could tell she was a wonderful mom; we would give her a baby doll to hold and she would cradle it and treat it like her own child. She would always shout to call the police whenever we tried to help her with care, getting ready for bed, etc. (I work second shift primarily) She left us about 4 years ago and is now in the skilled unit, which is the last stage in a retirement home. Her husband is completely intact and visits her daily, as do her children and extended family. The whole situation was depressing, when I am generally unaffected by the situations.

Currently, our youngest patient is 80. It's usually 75-97. Our oldest is 97 and she is strong and sharp, can't see her budging anytime soon.

Is that the oldest patient you have ever had?

We had a resident that died when she was 98 in the facility. We also had a 99 year old that just recently broke her hip.

Do your patients lose the ability to chew their food and swallow? If so, what is done once the person can no longer eat?

Yes, they do. Late stage dementia residents lose their ability to communicate, know when to use the bathroom, time-space orientation and, also, how to eat. It is a gradual process. Someone will lose their ability to chew meat or more complex foods, so we provide a "modified mechanical" diet, or cut up food. After a while, in some cases, the resident requires a puree meal, which is all of the food becomes blended. Also, residents can become severely distracted during meals and not recognize that they are hungry and start to wander or not know how to use the utensils in front of them. There are many ways a person loses their ability to eat. We usually only have a couple of these at time, because at that point they are "skilled" criteria, meaning they require more than our unit can offer, in more ways than one. A "feeder" table is set up, where the aids sit and cue the resident to eat or actually fully assist them by putting food on a spoon and taking it to their mouth. Our goal is to provide as much independence as possible, but sometimes it is inevitable that they fully depend on staff.

Maybe this is a terrible question, but when they get to the point where they can't eat, maybe it's time to call it a day. What's the point? I wouldn't want to live like that.

I agree. I would request euthenasia personally but that's not something offered because it's "not ethical." I could talk for hours on that. It's bs.

Is there a way a patient can state in their living will or something that they don't want any help with eating (thereby allowing themselves to quietly starve to death)? I mean, starving to death sounds miserable too, but at least it would be over quicker.

Ha, that's a great question. Extremely tricky. In the United States, you can't. If that person lived in a nursing home, the nursing home would go out of business for abuse and neglect. If that person continued to not eat despite efforts, they would probably get a feeding tube placed in and decrease their quality of life. Horrible? Yes. But that's the way it is. There are too many regulations.

Ah yes, feeding apraxia. You wake up one day and don't know what to do with a fork.

Isn't that idea crazy!? I read an Oliver Sacks' book called the Man Who Mistook his Wife for a Hat and he talks about how some people just totally lose ability to make the connection of concepts for certain objects. Like chair = seat. People without dementia, at that. Check him out if you're interested in that sort of thing. Crazy neuroscientist!

sorry if there is a question pertaining to this... My grandmother has had Alzheimer's and Dementia for probably the past 10 years now. She is at this stage where she is losing her appetite and cannot really chew her food and swallow it. She hasn't known who any of us, including her children, are but she knows that we are people she is comfortable around. A lot of the time she mixes up her past as a child and her past as a mother and those living situations. We all have kind of mentally told ourselves that she is no longer here since she is not the grandmother she was prior to these illnesses. I know that sounds terrible, but it's the only way I and my family can cope.

How much longer do you think she will be around for since she's been having this eating issue and the like for probably two years now?

I am deeply sorry to hear about this time. It sounds very late stage. I cannot rightly say but losing appetite is a strong sign that something is up. Is she on hospice? Take her vital signs or have them take it as much as possible. Having a relative in a vegetable like state would be greatly upsetting to me. Keep at it and take care of yourself and your family.

You don't have a speech pathologist that does this? Sounds dangerous.

Oh yes we do. They evaluate the resident while they eat and change diets. A doctors order is also required.

So maybe don't claim credit for other people's work.

I wouldn't intend to. We execute what is given to us as their plan. I was explaining the stages to the person that was curious.

Worth the down votes. Can't believe you broke HIPAA for an AMA. Good luck with keeping your job after posting your linkedin.

I have not disclosed details about a resident that would provide any evidence to identify them. I don't understand why you are so bitter.

You provided a first name and a location. That's a direct violation. I'm not bitter I just want health care providers to be better.

I provided MY first name and location. I'm not a resident, therefore I am not breaching HIPAA policy.

As someone who is investigating independent & assisted living for their parents, what advice do you have in such a search?

Great question. Visit many facilities in your area and on the weekend. Most likely no administration will be in and you will see more truth to the operation and the staffing. Observe the nurse aids, how they are to each other and to residents and their demeanor in general. You can read a lot about a facility in doing this. Look for an activities calendar, even though you are looking into independent living, chances are they will move into personal care at some point and the social interaction and activity become more imperative. "Feel" out each place. See if you like the vibe and mission statement. Ask workers how long they have been there, that speaks volumes too. Ask friends where their parents are and if they would recommend it. Best of luck and wishes to you with moving your parents. It's a huge amount of time and energy on every level to downsize. It feels like relinquishing independence to most people but the goal is to find a place that will encourage your independence and dignity.

http://www.rd.com/slideshows/50-secrets-a-nursing-home-wont-tell-you/

Don't really have a question, just wanted to stop by and tell you how awesome you are. I'm a social worker and I primarily deal with older clients with behavioral problems and developmental disabilities. So many people see old folks that are deteriorating and shy away because they think its sad and such, but getting to know these people has been one of the best experiences of my life.

Keep up the good work and keep making those people's lives better!

Good for you! Thank you for popping in and sharing that and your kind words. Social work has to be so tough, especially in dealing with families. Very intense! What are some stories you have in your line of work?

My wife's uncle is in a place like this, he has a girlfriend there...we often find her panties in his laundry. GET IT GUS!

Ha! We have had residents with cognitively aware husbands and wives but they would try to sleep together. Sex is another big avenue that's opened up with dementia residents.

My mom has just the slightest beginnings of dementia (Parkinson's , 66yrs old). She gets super defensive when we try to assist or remind. She drives, lives alone and just as someone come in and help with a few tasks. She ruled the roust and was fiercely intelligent, so this is not going to go smoothly as her faculties leave her. How do you best tell your patients something is no longer with in their capabilities, while upholding their dignity? We are having to do this more and more and she is in strong denial that this is possible.

Also, some of my students volunteer at a facility. My 9 year old son loves mine craft to the point where no one can stand to listen to him. But put him next to someone with severe dementia and he can explain it for a solid hour. They are just happy for the chatter and he doesn't care that they are not really getting it. He looks forward to it each month to tell Ernie more new stories.

Always tricky with the fiercely independent ones. Trial and error. Is she really sharp in terms of picking up on subtleties?

Yes, but the memory is lacking. So we can trial and error a second time if we fail the first time. :). We are also able to say things like "I like the idea you had for me to drive so you can save your energy for the cooking. Since your cooking is so much better than mine." Even if it was never her idea, she will not admit to forgetting an idea, so sometimes it works. But you can't lay it on to thick or she will call you out. She not mean just smart and refuses to be taken care of.

I love that idea of complimenting her and putting it gently. Keep playing off of that if it seems to work.

Thanks for the great AMA! You have given wonderful answers.

I have recently championed an education initiative at the hospital I work at dealing with " Dementia/Delirium management in Acute Care Settings". In the education there are a lot of references to Teepa Snow, a Dementia Care Expert. She has amazing and entertaining educational videos on her youtube channel for anyone who is coping with a friend or family member with Dementia. It is wonderful for regulated caregivers as well!

http://www.youtube.com/user/teepasnow

Awesome, thank you so much! I am actually at work right now, haha, so I will watch this as soon as free minute! Any and all education is always valuable. How excellent that you championed that initiative as well. Do you have any other websites you would recommend? And thank you for your kind words.

How often do you see patients whose family members had Alzheimer's, too?

My grandma's aunt on my mom's side had it. My great-grandmother on my dad's side died of it and my grandmother on my mom's side is showing early signs of it. I really, really don't want to get it. It's one of my biggest fears.

There was a woman I had mentioned that was diagnosed with dementia in her 40s and she was placed in skilled at the same time her mother was. Her mother was entirely intact mentally. It really varies and depends. Some people have dementia from Parkinson's from injuries or the war. Some types of dementia are genetic. That's the other thing, there are so many types of dementia it is hard to pinpoint. Do you know the diagnosis? Keep maintaining a healthy lifestyle, that's all you can do! How old are you, if you don't mind my asking?

I'm not sure of their diagnosis. I didn't know the other two people personally and my grandmother's doctor just told her she was "per-Alzheimers".

I'm 28.

Out of curiosity I googled whether or not Alzheimer's is a genetic disease. This is what came up: http://www.webmd.com/alzheimers/guide/alzheimers-genetic

It seems to be the assembly of a variety of factors.

My grandma is now in a home for dimensia and I have no idea how anyone could work there. Kudos. I suppose it affects me more since my grandma has had a very sharp decline but I think that place is the most depressing place in the world.

I am deeply sorry to hear about your grandmother. It must feel very depressing to be there, especially when a loved one moves in. Most people have this perception and view it as no possibility for hope or happiness. I hope there is some brightness in her day. Visit as much as possible! Was there anything that triggered the sharp decline, if you don't mind my asking?

I hate visiting because all I can think about is how she used to be

It's like grieving while she is still living, I would imagine. That's really rough :(

Oh the sharp decline was her husband dying on February 4th (slipped on ice and died later that day) of this year and then her son (my father on the 22nd of February, train wreck cancer) all at once. We had a normal Christmas in 2012 and then everything went to shit in February. Every time we visit her (weekly) she is worse. She doesn't understand anything, we basically have to tell her every time that we visit that we are just passing through town and that we don't need her bed to stay in, and she doesn't understand why my father doesn't visit because she forgot that he died even though she was in the room. She only remembers her childen's names, she knows that I am related to her but that is it at this point.

If you've ever heard the classic stories about sweet grandparents, that was what mine were. Nothing they had they wouldn't give.... and now they are both gone along with my father.

That's a lot of trauma for an elderly person to take. It sounds like you have had a rough past year. Take it easy, okay? Take care of yourself. I can't even imagine- I just lost my grandfather unexpectedly a couple of weeks ago. I can't imagine how it would be to lose a grandfather, father and have my grandmother going through this turmoil. Best to you.

What is the most uplifting experience you've at the retirement home? What's the funniest experience?

Hm uplifting... We have residents that help other residents out. For instance, there is one woman that was deeply concerned when her roommate was sick in bed all day. Whenever she left the room, she checked on her and made sure she was okay. She asked staff. She is such a caring person and especially to care for this complete stranger that she interacts with only in her room. In fact, I don't think she could recognize her outside of the bedroom.

Funniest? There is a SLEW of funny stories. A touchy-feely, boisterous Italian woman came up from behind me once and completely grabbed my boobs before I could have a chance to respond. Same woman opened the refrigerator door and pulled out the staff drawer and peed in it. How this resembled a toilet, we still are not sure. We have had streakers. One woman would constantly undress in the living room. A funny personal experience was trying to clean a woman's BM and toilet her, but she was a pacer. She would get up the second you left her side. So I had to run to the closet and open the door, go back and make sure she was sitting, pull out pants, go back, close door, go back, clean her up and make sure she was situated.

Another hilarious thing was when Michael Jackson died, a woman, formerly a school teacher, loved referring to people by their name. She said, "Our poor Michael." The day after it happened and followed it with a bunch of salad talk. We had a British resident that would rifle through the trash and then the silverware drawers. We had to get a lock for the drawer after that. Just things they say and do are hilarious and fun.

Hahaha these stories are great. Good job on attracting Italian women, I guess.

Yeah I guess is right. I definitely wasn't expecting my first lesbian encounter to be with an 87 year old!

whats some of the games / activities do you do for mental alertness and helping with memory, etc?

In prevention of dementia or for residents with dementia's minds to stay intact as long as possible? I'll answer both:

For prevention: Crossword puzzles, sudoku, reading, traveling, essentially anything that opens different parts of the mind. Puzzles, chess, quilting, knitting. Hobbies and activities that keep you mentally alert.

For residents: Word games, scrabble, physical exercise, trivia, sing alongs

nice. I donated a MindFlex Duel to an alzheimer's center close to my house last week and gonna go play some next week. http://www.youtube.com/watch?v=cAT9QGZ6wGw $40 on Amazon

Awesome! Good for you.

[deleted]

Awesome question! Love it. Usually someone with dementia dies because of complications from it. For example, aspirating pneumonia is a common cause of death due to lack of not remembering how to eat. It's usually complications as the result of the deterioration of the brain.

[deleted]

Yeah, as the supervisor that directly relays situations to family, I can completely understand their position and yours. First of all, there's a whole liability thing. If someone says something that COULD happen to a person and it doesn't or the opposite, that person could complain to the DPW or take it to the director of nursing or whomever is in charge above the person that says it. It gets hairy. Also, we tend to be real about things where I work. Nothing but the facts, but also nobody likes to be the bearer of bad news. It's a tough balance to have.

Today at work I saw one of the residents talking to a fire extinguisher on the wall. For 10 minutes she told it to come inside because it's dinner was ready.

Haha! That's silly. Do you work in a retirement facility too?

I do. There's never a dull day.

No, there really isn't.

I lost my grandfather to alzheimer's and he passed when I was 10. I am 28 now, and volunteer for four hours a week playing piano for the patients in a retirement home near me. I enjoy playing in the dementia wing the best, because nobody, I mean NOBODY, goes in there, even so-called volunteers. I get great responses when I play hymns, and you can see a little light go off and they might even sing along.

Thank you for what you do, and the patience required. Keep being kind, and never forget those who have a lifetime of experiences behind them. We tend to forget them on the whole, as a society.

That's amazing that you do that!! Music heals the soul. It's something familiar to them, a little piece of home. What an incredible gift! We actually have an independent living resident that does the same.

It is so true, too, that our society does not regard our senior citizens as having a lifetime of experience and wisdom, but rather as waste, because they can no longer produce. It is really a shame. Thank you for your kind words and continue to do what you are!

Part of my business is long term care insurance, and it is the only reason my mother has the funds to stay at home since her stroke. Otherwise she'd be in Medicaid spend down or living in my spare bedroom.

What kind of struggles do you see among the children of dementia patients as they deal with each other, the cost of care, and the decisions about care for the parent?

Thank you for your patience, I wanted some time to process this question. There is definitely turmoil between siblings, I am sure. We have had siblings that call and try to obtain personal information, but they are not the POA (power of attorney) and therefore we cannot give them anything. it causes rifts emotionally, financially and psychologically, which is truly a shame. I haven't seen anything like this recently, but then again I'm not behind the scenes with them as much.

My nan has just been diagnosed with Dementia. She's in her late 60s. The deterioration was really sudden and because I live so far away from her, calling her is terrifying because she's changed so much.

Any tips on how to talk to her/deal with it?

She was basically there for me when my parents weren't and the fact that she's not herself anymore is really fucked and I just don't know how to deal with it.

Edit: Your AMA is depressing me. I think my nan is very early stage and the problems and symptoms you've listed for mid-late stage is upsetting. Not your fault at all, but I definitely regret being here.

I would say, with most people with dementia, you have to go with the flow and amuse them. Provide them with patience and respect. It is a downer of a topic, especially when you have someone close to you that has it. Take care of yourself and do something to make yourself laugh tonight.

No questions, but I just wanted to say kudos to you for doing such a hard job. My ex-wife worked as a CNA in a dementia wing, and the stories I've heard amazes me how someone could keep at it. I wouldn't be able to last a whole day doing what you do.

I appreciate this comment, thank you. It can be tough, but on the whole, I really enjoy it and wouldn't trade it.

Why the hell don't the nurses fill out god damn icd-9 codes?

I don't know what this is, but I'm sure one day I will, since I'm in nursing school.

First off I wanna say how I have the utmost respect for you and what you do and applaud you and thank you for doing this AMA. Second, and sorry if this has already been asked, but how often or normal is it that someone with Alzheimer's has severe depression? My grandpa is on a steady decline and while he still remembers us he does not remember what he did the day before or something. The worst part right now is he is very depressed he is being treated for it but I don't see it helping. He has told my grandma on several occasions he wishes he would just die so he would be out of her way. And a few times he has gone to bed at 6PM and not eaten dinner. He gets up 8 or 9ish in the morning so it wasn't that he was exhausted. Is that common thing to happen with Alzheimer's?

I appreciate your kind words, thank you. And yes, one of my inservices actually has a statement that says that dementia and depression are not one and the same, but they tend to come hand in hand, especially in the beginning. Think about it, some people are aware of their mental decline and are used to being in control. They know something is off. That has to be horrible! That is awful to hear that is telling your grandmother he wants to die. People with Alzheimer's are case-by-case but I have seen it where people don't know what to do with themselves and fidget and pace all day, trying to find something to do or the complete opposite, which seems like it may be the case for your grandfather, and sleep. I would suggest maybe trying to revive him by partaking in activities with him that he enjoys? Sometimes it is hard to shake the depression for some people, but just do the best you can. That's all you can do. I hope for the best for you.

Based on my family history, I'm operating under the assumption that I'm going to develop dementia about 50 years from now. I'm childfree, so I'm also operating under the assumption that I won't have anyone to take care of me.

Do you have any advice about things I can do now that will make it easier/less unpleasant to live with dementia when I'm old, and to ensure the best possible quality of life if I don't have anyone to advocate for me?

If you are very certain, I would have a friend POA or niece or nephew. Do the research ahead of time, but things change so quickly in our personal lives and in the facilities we look at. Time changes everything. The best advice I can give is to live in the now and not focus too much on that, but when the time comes (maybe in your 50s and 60s?) Start to look around.

my grandmother has dementia and it is the saddest thing i have ever seen. my grandmother used to bake these peanut butter cookies and now she doesnt know my name. I'm crying just thinking about it. i cant imagine my moms position. watching someone you love wither away fucking sucks. were trying to put her in a dementia/alzhiemers specialty housing near us. she lives out in long island thats another problem she will freak out because she doesn't know what is going on. always cherish the older memories

:( Take care of yourself during this difficult time. It is never easy and it sounds like you are dealing with it well by going through the motions as they happen.

not sure if you may have already answered this, but I work as a nurse's aide in AL. once in a while, we get residents that should be in a dementia facility or memory care. it gets frustrating when we have someone move in that can be overly aggressive/confused 24/7.i always fear for my other residents safety, and we are also locking all their doors, as he wanders in their rooms at night. this is not the first (extremely aggressive) dementia resident I've dealt with in assisted living.

my question is do you have any tips on how to limit aggression and/or confusion? there's so much repitiveness with these residents and I just feel so helpless. I've tried redirection; try to get them involved with activies with our more able residents, but it just causes more issues. thanks!

Yeah, that is definitely rough. Sometimes we have the same issue with overly aggressive residents that will confront other residents and start problems. Usually we interfere as it happens and try to keep the person occupied 1:1 or independently. It can be a challenge when there is limited staffing and assistance though. It isn't fair to the other residents to have the attention focused on the problem behaviors. That's where agency comes in!

I lost my Grandfather to alz/dementia a few years ago. It was especially difficult because he was a father figure to me. What foundations or charities are worth donating to help with research or those already suffering from the disease?

Great question. I usually donate to Alz.org. They have organizations that help fund research.

Have you ever heard that coconut oil (organic pure) can help with dementia? Do you use it?

I haven't heard that! In what way does it help? I sometimes use it for chapped lips.

There has been a little more information popping up recently about the specialty retirement homes, like the one you work in. What kind of training did you go through? The news story I read about was that the average was an 8 hours of staff orientation (which was the standard in the memory support facility the story was done on), they had someone mention that 8 hours could not be enough time to teach the intricacies of dealing with dementia patients.

Oh wow yes 8 hours is definitely not enough on the educational end. I had the same type of training but we do inservices which are like continue education bits. Experience is the best way to learn and like every other topic, there is always more to delve into. Everyday you learn something new. I've worked all shifts which gives an insight on how the disease affects the person throughout the day. Second shift is definitely the hardest for them; they experience what is called sundowning. It's behavioral related and results in responding to the slightest stimuli. That's a whole other subject.

There was an article in the New Yorker that was an interesting read on how to reduce stimuli by especially removing television and approaching with a calm demeanor. There is actually an entire project being developed around this called the Greenhouse project which started in Arlington, va. It focuses on creating a home-like atmosphere and much less institutional place for Long term care where the nurses do everything, from laundry to cooking. It's incredibly fascinating and where I work we can definitely feel the shift beginning. It's a wonderful thing just too damn expensive at the moment. Here's a link for more info: http://thegreenhouseproject.org/

I'd like to hop on and add to this question. Do you work for an independent memory care facility or a larger chain? What's the ratio of staff to patients? Thanks for doing this AMA. This is really interesting to read especially after the recent PBS/Propublica Frontline story.

Absolutely thank you for your interest. Awareness is everything. Where I work it used to be independent but it has joined with 2 other small scale retirement communities in my area, which is still small scale. It is a nonprofit religious affiliation. The unit I work on has a 22 max capacity and there are 2 aids on in the morning and evening plus a guide and one aid and one guide overnight. So it's 11:1 resident to aid but 7:1 all staff to resident to staff during the day and evening. It actually is a cozy amount at the moment since we don't have too many exit seekers and people that require more attention plus during the day we have activities from 8-7 most days during the week.

Just out of interest, did you or any of your colleagues watch that Frontline documentary? If so, what was your/the general reaction? Also, do you support more regulations on the industry? Thanks again for doing this!

I haven't! But I will definitely check it out. Hadn't even heard of it so thank you for the recommendation. In terms of the regulations, it's a bi o a shame because it makes thinks more institutional and, again, makes things more broad spectrum instead of looking at things case by case. For example we need to lock up all poison control hygienic products in the residents room because they may eat them. However, only 1 or 2 people at any given time are likely to do that based on their level of dementia. The stronger residents come in with their routines, such as brushing teeth after meals. So simple. But we have to keep toothpaste locked and they may stop that routine as a result. If we are aware of it, obviously we accommodate but sometimes we aren't and it becomes a whole dignity issue. Yeah regulations are an enormous topic that we could get into for hours, especially after working the frontline. :) my pleasure to do this! It's a passion. Ask anything else you may think of!

I recommend the Savages too. Great movie with Laura linney and Philip Seymour Hoffman. Really touchs on the subject.

You say it's a religious affiliation--what religion/denomination? Is your retirement home specifically religious or does your religious "sponsor" just fund the place?

It's called Mennonite which is a Protestant Christian sect. It is specifically religious, but we have more than just Mennonites that move in. It used to be very strict.

[deleted]

Some common signs and symptoms are, naturally forgetfulness. Forgetting where they are going or why or what. Getting lost when driving somewhere. Repeating oneself and repetitive behavior. The later into the disease someone goes, the more it develops into personality change in various ways. It can be that someone that is more quiet becomes more outspoken, someone angry can become more pleasant. A person can lose their inhibitions too.

Sometimes there is nothing you can do to prevent it. Since there are so many ways a person can acquire memory issues, such as genetics, a traumatic event or lifestyle, there's no sure fire way. They say nutrition and fitness and an active lifestyle helps. Not drinking alcohol. However there are no guarantees. In fact, one of my most helpless residents was the valedictorian at her school and opened a library. There's almost no way of knowing.

[deleted]

What are some symptoms you are experiencing? I'm 24 and I say dementia is contagious because my short term memory can be a little off after working. They are finding younger cases but usually as early as the 40s. It may be stress related or another health issue. Don't worry too much about it.

[deleted]

No worries. You're just human:) and at a pivotal part of your life. Being a teenager is always a mess. I remember when I first started working there I thought I had gotten dementia but it was really just the immersion of being around it all of the time and worrying.

What's the best thing you think someone could do for a family member with dementia? Do they all appreciate visits from family?

Oh my goodness yes. The one thing I have reassured family with over and over is no matter how far along in the digression, they recognize you whether they can say it or acknowledge it or not, they know when a loved one is there. With each person they respond differently but they act a certain way and you can almost feel it. Energy is one thing I have come to believe in front working with people with dementia. They pick up on the most subtle of body language and cues and exude much of it as well. It is a difficult thing to explain through text naturally.

The best thing you can do for a resident is also individual based. There's not one thing that will go across the board, but some things are more general that seem to work. Family photos, pleasant air fresheners, plants and flowers, hobby or interest based items. For some people they are used to being at work all of the time (wonder how our generation will respond!) and desire work related items like clip boards. Is there someone you have in mind that you want to do something for?

Luckily no one in my family (that I know of) has had to deal with dementia, but I'd like to know just in case to make sure that if they do face that problem later on that I'll be there for them. Thanks for answering my questions.

My pleasure. Predict and prevent is a great strategy!

Do you folks use those cameras (from Microsoft Research, think they were called LifeCams or something) - basically slightly better than cat collar cameras - and if so do they help people?

I have not heard of these. Could you send me more information or explain them? That sounds interesting

Is it possible to go from "normal" to demented in a short time?

I'm asking cause my grandpa was pretty normal (he had his moments of forgetfulness, but nothing serious) until last Saturday. On Sunday he fell down and suddenly he is a completely different person. He is in hospital right now and will be sent to a retirement home next week where he won't be allowed to leave on his own. He didn't have a stroke.

That is not uncommon. When a traumatic event occurs to an older person, they may exhibit behaviors and bouts of forgetfulness. It should hopefully be temporary. I have seen it with my residents. Also consider having him checked for a urinary Tract infection. This also causes an increase in falls, change in behavior and mental status. Let me know how it goes! Will be thinking of you. Best of luck.

Thank you very much!

Oh and thank you for the awesome job you guys are doing. During my civilian service here in Germany I've had the chance to meet some people who were working at retirement homes and you guys simply rock. So much caring, so much love for strangers, I'm still amazed!

That is very sweet of you to say! Thank you :] It takes a certain person, for sure. How are the retirement homes there as compared to the USA?

I think it depends on how much money you want to pay. The retirement home we chose for our grandpa has a good reputation so I hope he'll have a good time there.

The retirement home where I partly worked at (run by the Red Cross; I mainly worked for meals on wheels) was really nice: large rooms, great entertainment program, a large park area close to the building, located close to the city centre.

It takes a certain person, for sure.

Yes! The people I met there were definitely the greatest people I've ever met. Inspiring! Unfortunately the salaries are really low, you guys deserve more!

That's awesome. It really makes a difference when nature is close by, too. Our facility has a courtyard where they can sit and there are beautiful gardens, including a vegetable garden that they maintain as an activity. That's amazing you work for non-profits! How has that experience been for you?

Just to make this clear, I used to work for the Red Cross as part of my mandatory civilian service. Right now I'm busy becoming a teacher, unfortunately I don't have any time for extra work now. But I will bust my ass for my kids, that's for sure!

How has that experience been for you?

First of all, I think the whole experience gave me a lot of confidence. Suddenly this shy, introvert kid had to deal with total strangers, had to take over responsibility. It was scary. But it also turned me into a grown up man, I matured. Unfortunately I also had to experience lots of heartbreaking moments, lots of elderly people have to live lonely and sad lives. The thought that some of my loved ones might one day live like that almost killed me.

Exactly. I would have to say the same- going from being a reclusive angsty teenager to exposure to real, pertinent issues and also learning how to talk with people. My experience has been incredible and obviously life-changing, I've worked there more or less full-time for the past 4 years.

What's the predominating mood of the demented people there?

It depends on who is working and what time of day and what's going on. The majority of the time, there is a flat affect. In fact, that's how you can really tell if someone has dementia is the glaze in their eye. There is a woman at my work that has an aggressive nature and when she works, the residents are more unsettled and anxious. Generally when I see them, they are calm and confused and trying to find something to do. In the afternoons, their behaviors really come out.

My mother had a moderate stroke in 2012, but is still living at home with live-in help. If the time comes to go to assisted living and possibly a memory unit, what are two-three things you would tell her children to look for to obtain the best possible care?

In terms of belongings or in terms of what to look for in the facility?

Well, when she had the stroke I went through 17 (I know, prolly excessive) asst living and rehab facilities before picking the one she rehabbed in for four months. So, I'm used to putting staff and admin through their paces and on their toes in order to get to the truth. However, that doesn't make me smart, just kind of a thorough person and sometimes a bit of a dick. I guess what I was looking for was advice on getting them to produce fitness reports about the place, how incidents of alleged abuse were handled and things of that nature.

BTW, let me tell you that I think that people willing to work with the most damaged among us are doing something very special.

Thank you for your kind words. It's not excessive at all; it shows concern and care. It's a hard decision to make.

Also, I am terribly sorry to hear about this. It is such a stressful event, on so many levels. My heart goes out to you.

What is the saddest part about your job? How do you keep the sadness from affecting your daily life?

Honestly, at this point I have learned to dissociate myself from it. It's somebody else's life that has crossed my own, for which I am grateful, but it is their path. How I view it is to go into work with the best of my ability and give them my all so when I leave, I feel fulfilled my duty. The saddest thing I have seen, though, is a woman with dementia that went into the skilled facility and her mother, who was completely mentally intact, also lived in that part of the facility. Heart breaking. It is also hard when people are looking for home or ANYTHING that is familiar to them. They are constantly searching, you can see it in their eyes and in their actions.

That's good you can disassociate work with your personal life. I had a friend whose mother worked in elderly care who couldn't separate life from work. She was depressed and upset everyday and it ended up costing her marriage. She has since quit her job and is still divorced.

Wow! That's intense. What a shame! It's definitely not meant for everyone that's for sure. Some people get angry at the residents for being in their state which is disconcerting. They can't help it! We are there to help not control them. That gets under my skin.

Dementia is strange. My father would have dreams that he couldn't separate from reality. Sometimes it was benign, like dreaming there was a non-existent restaurant up the road, but once he dreamt that my mother had passed away, and was inconsolable until she showed up. This was at 4AM.

Thank you for your hard work. It's something I could never do.

Wow that's awful!! What a horrible dream. It must be very helpful to him that you are so empathetic as well. Thank you for your kind words.

My mom is 64 and was diagnosed with early onset Alzheimers 2 yrs ago. She has recently moved into an assisted living facility and this whole experience has inspired me to get my masters in health admin with a concentration in gerontology. I do not have a health care background, where do you think is a good place for me to start applying to jobs? I worked in a similar facility as a waitress in high school.

I started here as a dietary server. My former coworker worked her way up the latter here, too, and went for her bachelors in health admin. It would be beneficial for you to do the same I think especially working as a nurse aid. You see the fundamental issues that come up and the basics. Financially it's not the greatest, but experience is great. I recommend applying at retirement homes or home health care agencies. Best wishes to you and your mother as well. That's wonderful it has inspired you!

My grandfather is currently in a nursing home for people with dementia. First off, I want to say I really appreciate everyone in your line of work. I know for our family, the nurses at the facility have made a world of difference, not only for him but for us as well. For Christmas they made all the residents scrapbooks of their families with names by the pictures, with money out of their own pockets.

Unfortunately, this type of dementia is genetic, and my dad is already showing the early signs. We've heard rumors that solving puzzles and problems can help the mind last longer. Do you happen to know if this is true? We know that there is no permanent solution, but we've all come to terms with it and try to make light of it (my dad always forgets to take his memory pills and that still makes me laugh).

I've definitely heard the same. I would compare it to exercise. Physically we encourage the residents to do as much as possible for themselves, because if they don't use it they will use it. Same goes for the brain. Keep it up! Anything helps. Keep him stimulated! Best of luck.

I just wanted to say thank you for everything I do. I lost one of my grandmothers to Alzheimer's disease and it is one of the most awful things I can imagine someone going through. We were extremely hands on and present for it all and I'd never wish it on anyone. Sunset is the saddest time of day. Compassionate people that provide the real hands on care are true heroes in every sense of the word. It seems you worked from the bottom up so congratulations on all of your success and future endeavors.

That is horrible and I agree it is one of the worst things to happen to a person. It has to be so difficult watching someone you love transform and gradually lose their former self. I appreciate your kind words. Thank you for sharing too.

What can you do to help keep people with poor memory happily entertained? My partner's grandmother is a good fifteen years older than his grandfather, and has what has apparently been termed "severe memory loss." Partner and I try to keep her busy so that his grandfather can have an hour to play a computer game or some such without her sitting beside him and trying to get his attention, but she won't usually stay. She hates it when he naps, unless she is going to nap as well. She's a sweet lady, not at all combative, but it must get tiresome. All I've found to do is leave the dishes undone when I cook a meal - she insists I shouldn't have to cook and do the dishes, and she actually seems quite content while doing them.

Awesome! You have cracked a code. She likes washing dishes. Does she like other house chores? Folding laundry? Vacuuming? Dusting? Finding activities to keep some one with dementia occupied is highly individual. Trial and error! That's great you are so helpful with that. I'm sure her husband appreciates it

My father-in-law lives with us and has made sexual advances and overtures. I know this is the dementia, but I find it interesting that he seems cognizant enough not to do anything in front of others ~ especially when my husband (his son) is around. Help me understand this please, because although I try not to let it anger me, it does. Did I mention he's almost 90!

That's understandable that it angers you. Does your family believe you about the advances? It is a weird thing. Men seem to understand that because they will advance on the workers here behind closed doors. They just seem to understand it for whatever reason! Good luck with it. Just be firm with him and ignore/avoid. What tactics have you been using?

Are you ever tempted to play pranks on the patients?

No that hasn't occurred to me. Respect is my aim.