Engaged caregiving and stage-appropriate activity for individuals with frontotemporal dementia.m4v

so when you have a man who looks like my husband suffering from what he's suffering from when you've lost all your friends when you've lost your job when you've lost your humor you have to somehow exist and I needed to figure out how to exist with this new man in my life once I knew that he was a child I thought well how do i how do i best interact with you and I was doing what was socially correct initially I was playing the brain games I was playing crossword puzzles I was having him write in a journal every day because I tell ya that's what you're supposed to do to keep the brain function happening and he was doing this but not happy about it I think he was hoping I'd go back to work so when my granddaughter was staying with us she had a little doll and the doll was just one of those little baby dolls and she was had her grandpa sitting outside at the cabin holding this little doll rocking this doll back and forth and I went out to chastise her say what are you doing with your grandpa don't treat him like that he could hardly get down let alone get up and and she says but nanny he's having fun I said Lexy he could push you on the swing he can play catch with you all the things you know I thought were socially acceptable and I turned around and looked at dawn and he was humming this little song with this with this little doll in his hand and I have never seen him happier and that moment I did a 360 degree turn and I thought you know what I don't know what studies have been done but that isn't working for frontal temporal dementia we need to do what is stage appropriate if it can be age-appropriate - boy that that's terrific but the most important thing is stage appropriate once I figured that out we started doing some of these things and we'll show you some of them but we were still having such a problem with his sons sons are grown sons and they didn't want to see dawn playing with the toys they kept saying to him come on dad just sit down come on come on dad you can just sit down and I said he can't sit down he'll sit down if you give him something to do can you imagine yourself saying to an 18 month old come on Sally just sit down come on you can just sit here we're going to chat we're going to have fun but you just sit and be a nice little girl all the time it doesn't work if you want a toddler to be behaving you have to give them something on the plate you have to give them some sort of interaction so that's what we what we are now doing with this active engagement we are interacting at the stage that resident in this case my husband is we developed it for frontotemporal it now is a program that anyone in long-term care benefits from if they're a higher functioning resident you know what they become a teacher helper and they help the person design whatever is being designed if they're a severe cerebral palsy or another ill disease like that we have the teacher helpers help stimulate them because you and I and you probably wish you didn't get 300 stimuli daily but you and I get 300 stimuli daily and on those exam days you probably get more than that whereas a dementia resident typically gets 40 stimuli daily so when you do the math that's a reduction in stimuli by one hundred and eighty seven percent sorry by eighty seven percent yes so that's reducing the stimuli by eighty seven percent think of yourselves in school think of yourselves with miss hunter if she reduced the stimuli she gave you by 87 percent besides sleeping in your seats every class not learning anything what God gave you between your ears would start to diminish because you wouldn't be using it in schools when children are at home as teenagers what did we as parents do stimulate and give you everything that we possibly could so why when a person's losing those abilities do we decide huh let's just not stimulate let's make the tube most important things in your life be putting a bib on and waiting an hour for supper and watching TV of which we can't even understand anyways now tell me why that's okay because it's not and that's why we started this program so I'm going to let Steve tell you a little bit about the program and then we'll just sort of keep going back and forth talking about it Thank You Donna excellent well my first twenty-two nursing for Donna we checked it out I walked into the University on this was a lock unit called memory lane list while I work in at this 12 beds and I looked and there was just the people were here's what they were like this I walk in now six months later I walk into the place and it's a good morning and they just go room if they're just they're alive they're happy to see me because they know I'm gonna interact with them I'm gonna do something they'll build stuff for me and they love it because they know what happens that their work their minds by playing with toys they sleep better they sleep all night they're happy they don't get agitated when you give them drugs what happens they they lose their legs in and then they follow her break their hips whatever back leg and they get edged in it so then they just give them drugs I said no what we can do we use toys stimulate them and you know this works we found out now it works a hundred and ten percent even example what happened one day I'm I was working my pod and just simple pins here and III working with Polly I was thinking we don't go down to down the spot and and take a look and see what's happening there so what can I just and I been toured to one the tables and all of a sudden feel that a tremendous pinch on my butt I mean like wow eyes well whoa this lady walks around that cell she does this pinch that's not she does so we tie just develop this and then what you do you just put in people's you know I'm people shirts or whatever you know and you could pinch without on this board and no daddy Emily's from pinching other people now see that's one way of doing it so I thought work so now she's happy because she's doing this now we see the pinching people who I reach it out that's odd mark stayed there for three weeks my but it hurt nothing we do is we have these we had the school Carleton high school McDonough thought four years make these for us and I get the plywood for nothing day long Bears give it to us they donate bolts nuts and bolts and what they do I say okay I give to a resident I said could you help me with that could you maybe clean this board is dirty so we'll take the nuts and bolts off the washers they take a my lofty they wipe the board clean you know because they've got all day right so then they start putting a bolt on I don't have to help them I just asked me to do it for me you know and they do it and they just it takes maybe two hours to get this done we got about 75 of these made and they work 100% for the residence all right tremendously well usually to speak man when we're talking about these types of things what we're doing is we're respecting the obsession of the prey of the patient my husband's obsession is picking things up so when I have him work with puzzles and I've got all the puzzles over here when I have him work with puzzles what I would do is dump the puzzle just dump it right and he has to then physically get up and down up and down and pick it up and he wants to be picking things up people ask me how do you know what stage they're at and what what's what type of puzzle should we be using with them so I always I guess I guess it's maybe the high school in me or whatever from teaching I I always start with a puzzle like this now if you notice this puzzle has a border that has design on the border so anyone who's challenged they hopefully can see that gee if I add some of this designed to to the border I can I can make it fit that can i there we go so now my husband can't do these puzzles anymore initially he could and my kids they were upset that I was giving him these spider-man puzzles and Tinkerbell puzzles they're upset because this is their dad and how dare I and I said kiss he doesn't care if it's a hunting puzzle because he was a great hunter if it's a hunting puzzle or if it's a spider-man puzzle he cares that he can get it done and do it so when we go into the homes we have to assess gee what level are they at so this type of puzzle would be for someone who really has some lots of shaking happening and again I don't know what anyone suffers from when you guys are working you'll know what the ailment is but I don't so I can just go by by what they're showing me so this lady came over to me and I was working with puzzles like this and I said would you like to help me I'd never met this woman I was just out in the rotunda my husband was helping me put some stuff away we'd just done a presentation so she wheeled up and I gave her some of these puzzle pieces and all she was struggling and she was trying to do it and I put the puzzle on her lap she was in the wheelchair and so I thought Oh too difficult because of the movement so then I gave her a puzzle like this and she worked and worked at that I left and she's still working at the puzzle so I just went to the nurse and I said could you make sure that puzzle gets to her room now when her family went in they again because of society right they're upset that it's a puzzle like this so I told the nurses the family will probably be questioning give them my phone number and I can explain why that's the puzzle that their mom or grandma needs once I explained it showed them how all this works they so got the idea so when when we're trying to pull things together for residents there's a whole gamut of abilities that you need to work with and so you need to have lots of different options for them this one that we respected the pinching this one we're respecting my husband's idea of picking up and and needing to always tidy and get things right when he's in long-term care if ever he gets agitated or starts pacing because he's missing me they take a puzzle turn it upside down and he's pacing he sees it sits down all the energy all that negative energy goes right there there's no risk for staff because we're taking care of it we are allowing that obsession to have a home and I challenge that every person will have something that will challenge that energy and it's up to us to find it for about six months I worked in this unit and twelve people there's three ladies that sort of stuck together and I've tried everything with these ladies one lady one day would pick up this and insert blocks and pieces into that took her forever but I said you know there's gonna be more to this than that so I took a ball a beach ball and I said I walked over to Agnes and I said Agnes we play ball with me and she said he she looked at me as if he didn't say anything I said would you catch a ball she didn't also he says will you throw it to me so I gave it to her and say we throw the Baltimore she didn't know how to throw it so I just teach her how to throw the ball it's eventually about two ministries know how to throat tell Sherwood you catch the ball she said so I threw the ball of could fell right through her hands so I said no he got a hold hands together so about ten minutes into this two other ladies that used to Chum around with this lady joined us and first you know we start playing catch okay so pretty Kelly back to I backed up a little bit each time if we playing cash back and forth so the day was done and so next time I come into my pot and I color the pod so I come in and just one of the ladies that works with the residence system nice team and I said what did you do with those girls yesterday says oh I thought it was in trouble I said what do you mean what do they do he says well I we have never ever seen them laugh or smile it's really I saw I haven't seen that but maybe you have said what are you doing so you know when you're done your work you can see what I do with them well she couldn't believe it's just something as simple as a dirty little beach ball could make the people laugh these ladies never left four years perhaps I made them laugh and be someone be somebody and use of some energy so they can sleep better at night they slept great they said they slept awesome every night after the abyssum exercises and not doing school or whatever or puzzles but doing something that would maybe they knew how to do like this or building real blocks or playing with this here item as if it's a windmill it's amazing these are little simplest things in life remember simplest things in life how they work we never even think it in real life it says oh no it can't be what it does it does work we found out in over a year that we be doing this it works a hundred and forty percent I mean I believe in it because it's working the people are happy you know so that's all we need to make them happy as they could be because you know their lifespan is not very long it'll make it us as best we can for these people because they're human beings they are really human beings the care for a resident is only 50% of what they need they need the cognitive stimulation as well as the physical needs I just have one of those puzzles like that still has the plastic on it so those of you who couldn't see it when I was sort of trying to juggle with it so again you can see that as you take these pieces out there's enough on the border to allow a person to know exactly how to fit it in so that that's why that type of puzzle is good um my dawn he you know what is good about him he will try anything that I give him and he'll take great pride in doing it so I asked him I said we've got all these little pieces could he make this flower for me sure he could sure he could he worked and worked and worked at it and this is his flower the reason I show you this is there is never a right and a wrong when you're working at this type of thing there is only a completion or a degree of completion and is always right however the the resident does it it is always right so from here we can then talk about circles and I can ask if he can find any half circles now he couldn't understand any of that now but back back when he could have so you need to always remember that it's that it's in doing the project that is important not in doing it right this little log house Steve made a really good job of doing this can our residents do that well it depends on what they're suffering from but most of them could never make something this great but you know what they can do is they can place these things one on top of another if the resident can make a fence that's what we make if the resident can only sort these things that's what we do we sort all of a sudden playing with magnetic puzzles how that is for for the grown children to manage they're now getting that this is healthy but it's taken me a long long time for them to understand that and so whenever you are dealing with someone remember this is so much better than waiting for my meal I've got an item here that's it looks the color coordination is not right is it yeah it's silly but as long as they do it as long as they put it together it just colors the meter thing because they think you know boredom is a disease of its own boredom these people is great so if you don't get them active what we're trying to do they'll be so bored it's just there's no fun in life there's they have nothing to live for you know when we come in they smile they laugh they they want to hold out then when I rang out to us and hold our hand they're so happy to see because something's going to interact with them so we'll nibble on somebody that for me I think great this is the greatest thing I've seen because look at that I don't care about the colors but they've done something they're doing something with their mind they're working the money set that we took to the holes and doesn't look real our only sort of question mark with this money was we don't want any of the residents to get arrested trying to spend this in the chute you know because you're going on outings and one of the girls today we had a meeting before coming here and she said we know where all the money went here's this guy and he's got a big wad and he's taking money out of his pocket and it's Eleni ways again this is age and stage appropriate my dawn used to be a banker so sorting money is real good sort and coins he's not so good that anymore but he can pretty well get to get the the bills where they supposed to be so what I do is stop I found the best thing for him to take the longest to sort beans I buy these you could eat him very okay they're the animal they're not cooked of course but he'll sort beans you know he does a wonderful job he sorts them I said no cheating now and he will not cheat you put the right colors in the right places and it takes him three four hours so I have some time for myself that I can read or do something else well he's doing this he will not leave it alone he will not leave it till his finished old all this stuff there's more than that into these proper places he will I mean he will not believe it of what I do for the money is I put him in the garbage bag the coins and the bills there's a lot more than that and shake him up real well in a big black garbage bag and then put him in a bowl and sit Donald you sort this money up please like I look what I dropped today the money is not sorted and he just like a banker you know I said no cheating he might put a five or the 20s a lot not all your Gina do it him all again so he thinks he'll money out again and bang bang bang bang bang in about two hours time he's got him all sorted and it's amazing what I would give this man going and he loves it he just loves that's a passion of us you know and it's amazing how these little things like people tick you know daily and he does it every day this another little toy that we have my grandchildren and joy at Steve and I are driving to Calgary to take the ground children home dawn and the ground children are sitting in the back seat and I'm driving and I said okay I want to see who can make a big long ladder and see who can count go from the back seat to the front seat and so the little ones are in car seats and Don's sitting between them and he's stealing all their things because he wants to win like like really it's stage appropriate and I've got two little ones crying this thing's coming past my ear and it's hitting the windshield he was so happy and the other kids I would then give them something like this and say try to make the letter O try to make the letter T try to make the letter E be whatever and the little ones they're doing that don't just keep stealing and stealing because he liked to be the winner so when you have frontal temporal dementia even though you'd lost your reasoning you've lost your judgment he knows that nice feeling of being a winner and doing this he felt he was winning Steven I've been friends for years and years so I had his support I had my family support but I certainly didn't have our neighbor or a friend support we've now taught them and allowed them to enjoy playing a game we've taught my neighbors that you know what you have fun doing this too and so now they will go and visit dawn in respite and each neighbor has one particular toy that they're sort of you know king of the castle with and doesn't come out until that neighbor goes so then it's special but it took teaching it took my sort of starting to move away from Don interrupting with interacting with his male friend and sort of like two kids in a sandbox so - giving them permission to play and for the other adult male to feel okay with it I was so angry because I just wanted to say buck up if this were your husband I would be there and the women were much better at being there than the men but the man they'd always say so how's the house that a big boy how big a guy today and I I just take him for coffee and find out for yourself how the big guy is so when we started doing things like this the male friends thought okay we can do that if we can sort a ratchet set they felt comfortable sorting a ratchet set again this is stage appropriate and also age-appropriate they felt better about that but dawn no longer can sort the ratchet set we had to teach people that when you go to visit the communication that you expect I mean it's not there you get the odd yes the odd no that's all you get from Dawn yeah family members would bring magazines we can't read we just went for an eye exam you want to tell me how difficult that is when you go for an eye exam and I'm saying to her like I don't I don't know how we're going to do this and you know you have to adapt and good for that that doctor she really adapted and she was praising dawn and five minutes would be the most he could concentrate and then she'd praise them and would get up and walk around so you just need to know that we need to keep changing things up all the time and you need to give yourself permission to play as you would play with your two-year-old at home you need to give yourself permission to do that and you need to give your patients that permission because Society has sort of got us going over here and we need to pull it back what works so the resident who's who's really has done nothing they've been there for two or three years and have done nothing they don't know how to get involved there was one lady three years she'd been there all she did was keep her little oxygen mask on and I went over to her and started rolling this back and forth and she caught it then we started doing other things she since passed on but we trained 90 students and every day for two weeks we were training these students and I knew exactly what that lady had been playing with for those full two weeks and the last day of training I just told one of the students we'll go and get a and this is what you do and she wasn't there she had died we were all so upset and the nurse came up to us and said she's had the best two weeks of her life every day she had someone like you guys playing with her and playing something different so we knew that that a good thing had happened and she went from doing nothing to doing everything that you've seen here there wasn't one thing that we would give her that she couldn't do and the staff there said she won't do a thing she's never done a thing the reason she's never done a thing is because you haven't offered her something that she could do so preface anew telling them telling them residents that I need help or school children are coming or grandchildren are coming poker chips both age and stage appropriate help me sort the poker chips I have to keep an eye on the time here so when they're sorting the poker chips we're sorting we're doing colors if they were of a higher level you could do some adding with it with the money I used to have envelopes with people's names on it that's they done we're doing payroll today and you know there would be 10 envelopes with with numbers on them and he used to fill the envelopes and really he thought we were doing payroll then he just started stuff in the envelopes with any amount of money and I knew all okay there goes there goes that that level and now it's just sorting it's just sorting it so you're always changing and adjusting because a resident will be at this level one day here the next and there the next day so you always need to adjust but the one thing I have learned is every time Don goes into respite he goes in at one level and he always comes out lower and that's because he is not getting enough of this he is getting some of it now because we've been working there for a year and a half and boy they see Don and they know bring out the toys and they see us and they see us working with twelve or fourteen residents and everyone really enjoying it so it's starting but it's not enough and so when we get out there when you guys get out there and you're seeing patients you're wanting to write on your writing tablet three cognitive engagements daily one physical engagement daily equally as important as whatever meds that person needs because would you want the meds or would you want something like this when you're there I have something here to read that the staff the working staff of these pods have written and their own handwriting and they just initialed it it said here once that the resident needs something to do other than sleep eat and watch TV kr brings the staff and residents closer together giving them a fun social activity together mr11 is boredom boredom remembers boredom is a big disease of its own limb is boredom good to do during downtime yeah because they have a lot of downtime activities keep residents mind motor skills sharp and it does it helps them I found that you know they say that the mind goes I don't think so we could bring it back maybe 10 15 percent because I know they can do things I when I when I first started they couldn't do this build something for me now they can because means that their mind is starting to come back a bit they're learning some skills and it's so important to have these people be active again you know it's one of other human beings stimulation lots of people with dementia don't get their primary senses stimulated and so you know what this is sort of nice anyway just like sit this rolling it up and down your arm you'll see in a video later one of the gals the one about the necklaces who you could tell was higher functioning she became my teacher helper and there was a severe cerebral palsy resident and this is the same day she was telling me you don't have my grandchildren do it and I should be doing it on their I thought well I'm going to turn you in to help her right now so I gave her this ball and I said that little gal over there could you go and just roll this ball up and down her arm and then I was thinking hopefully man I don't know that she's not going to stuff it in her mouth like I don't know right so then I'm sort of working with residents here but keeping a pretty close eye on Dorothy and she just rolled this all over the the residents head and down the arm every day for twenty minutes she does that we've had to replace this ball I don't know how many times because that's what she does so she's feeling great about it and so is the resident and we have her do this - it's the same as running your fingers through your hair remember how we all still like that I really like it when it's a shaved head I really like that feel anyways you know how we like it so if we like it the residents like it and so it's it's just time to do some of those things we're gonna have to wrap rate okay I like a few more to read here but they what do you have to say about what we're doing instead the resident seemed to feel a sense of self-accomplishment even though they only finished one small task which is important even smaller thing they do is very important I think they need more volunteers this is all on the pods but beneficially residents definitely built it from it and they do benefit they notice it apparently resident that take part in the activities are more likely to have a good night's sleep and there isn't that some that they recognize that now that they have a better sleep okay but Donna and I received the ball on the two yard line on our theory our line and we're going against the wind I guessed a very negative defensive team negative we're trying to propel the ball to the other side down I working our butts off we are working where we're down to the one-yard line and the third down one yard to go for attach them to win the game you know something we need people like yourself professionals like you if you get in the health field to help us get the ball across the goal line for the touchdown to win the game okay I'm gonna need you not to drop the ball we need your help we just gotta do it okay thank you you

Channel: The Canadian Centre for Rural & Ag Health

Views: 68,275

Keywords: frontotemporal, dementia, frontal, temporal, fronto-temporal, FTD, FT, lobe, syndrome, engaged, activity, activities, appropriate, long-term, LTC, active, engagement, purposeful, caregiving, caring, carer, Alzheimer, RRMC, Rural, Remote, Memory, Clinic, RUH, Royal, University, Hospital, Saskatoon, of, Saskatchewan

Id: KOgkDE3brkE

Length: 31min 27sec (1887 seconds)

Published: Thu May 03 2012