What to say to people with Dementia?

[Joey86]

Hello,
I am a second year adult nursing student currently undertaking an independant module about how to communicate with people with dementia.
When dementia patients talk about their past e.g you must let me go I have to go and see my mother or when trying to stop a patient from falling out of bed when they insist that they have to go and catch the bus otherwise they will miss, how should one reply?
Some people say you must be honest and tell them their parents are not alive while others speak of agreeing with the patient, lying and saying there will be another bus sooner.

I would appreciate it and thank anyone who has any views or comments on this topic.

Joey

 

[Amy]

Hiya Joey,
When people are sundowning, hallucinating or just very confused, I don't think that there is any reasoning with them. With my mum, and now with a gentleman I talk to in her Nursing Home who is constantly saying"Where am I? I don't know where I am. ", I adopt the approach of speaking calmly and quietly, just trying to reassure them that they are safe where they are, that they are cared for, that there is no need to "go" anywhere. With my mum when she wanted to go and see dead relatives we did sometimes try and explain that she was getting mixed up - in fact I think that was the line that we normally took, but I think the thing that you cannot do is be too adamant or confrontational about it. The person with dementia is confused and looking for a time and place where they felt safe, we have to try and make them feel that they are safe in their current mist.
Amy

 

[Brucie]

Some people say you must be honest and tell them their parents are not alive while others speak of agreeing with the patient, lying and saying there will be another bus sooner.

Take each person as an individual, but past a certain [in my experience very early] stage, there is no point in trying to reason with them. You need to experiment to see what works, and whether this related to a certain time of day - ie sundowning - or simply their wish to return to some time or place.

With sundowning they usually become agitated. Most residents of dementia homes will make some mention of the past which, if they are not sundowning, will not cause agitation and can become a topic to talk to them about.

Some people say you must be honest and tell them their parents are not alive

I'm so glad I have not met such people..... but give them time and they will probably learn with experience. That's the thing, we all enter this tunnel with 'normal' conceptions of all sorts of things. But most of us learn.

 

[Norman]

Bruce
I still think that you r short answer made time back says it all."You cannot reason with the unreasonable"
Norman

 

[Dearth]

Howdy Joey.

From my own experience, it all depends on the situation, and on the skill of the person who is interacting... plus, a rapport has to be established prior to any interaction (that is common sense really).

Try looking up the following re: dementia care:

Validation Therapy.
Reality Orientation.

Personally, I find it cruel to tell someone that their parent is long dead and would hate to see what it would do to me if the roles were reversed... yet some people think it's the 'honest' thing to do.

A way of getting around this may be via a 'guided learning' technique... here's a brief example of how it can work, although NOT a definite... just to give you an idea:

One gent I was looking after said that he had to go home because his Mum would be looking for him.

I asked him where he lived and some questions about his Mother (you'll find more re: this in 'Validiation Therapy').

I then asked him had he any brothers and sisters - he told me that he had a brother, but he had died recently aged 74.

Anyhow - to cut a long story short, he came to the conclusion that if he had a 74 year old brother who had passed away, then he himself was advanced in years, and thus told me that his Mother had passed away some time ago.

Although this made upset him somewhat, he was able to ventilate his feelings and we had a discussion about his family and some of the joys and experiences that they had shared together.

Now I feel that is a HELL of a lot better than just saying:
"Your Mum's dead - you're an old man!"



Hope all this makes sense.

All the best to you.

Neil.

 

[Joey86]

Thanks

Hi to everybody who has replied thus far,

I have much appreciated all your thoughts and I personally normally talk around the subject. Looking at research and your comments I plan to adopt the idea of guided learning that Neil mentioned.
I have now finalised my ideas and am now awaiting to hear back from the university as to whether my assignment theme is acceptable.

Officially I dont start the module until the next academic year (sept 06). Presuming that my assingment goes ahead, I will probably be putting some more posts up on here nearer the time to help aid me with my assignment - for those who don't mind replying to them!

Thanks again to everyone who has taken the time to reply so far.

Joey

 

[Dearth]

Good luck with it Joey... let us know how you go on.

By the way... here's a link to a book that you might find useful... I'm not suggesting that you buy it (as it's ruddy expensive I reckon) - but you should be able to borrow it from your university library or similar.

http://www.amazon.co.uk/exec/obidos/ASIN/0335198554/026-8457327-6207647

Hope it helps.



N.

 

[Lila13]

Yes, people said don't reason with them, but I said she isn't a "them" she's my mother, they may know whether it's any use trying to reason with their mothers or other relations, I will decide for myself when and how and to what extent I can reason with mine. I said perhaps some of her brain cells have gone but she still has plenty left to work with.

So many people wanted to turn her into a helpless baby (offering to get a commode, plastic feeding things etc. none of which she needed).

Perhaps one day she will be lose what is left of her conscience and her reason, perhaps we all will, but that time hasn't come yet.

Lila

 

[Dearth]

So many people wanted to turn her into a helpless baby (offering to get a commode, plastic feeding things etc. none of which she needed).

I absolutely HATE that!

I'm in a job where you try your damnedest to promote an individual's independence... this is not specifically dementia related - I have done this all through my Mental Health training.

At first I thought it cruel to 'not help' - but that's not what it's about... it's hard not to jump in and say 'let me do that for you' when you've been brought up 'proper' - but there are times when you have to stand back and let people do things for themselves (otherwise you have to consider how they will manage when another person is not there).

Again, I'd like to mention Tom Kitwood:

Kitwood T (1997) Dementia Reconsidered: the person comes first Buckingham: Open University Press

He refers to people being treated such as you mention thusly:

Disempowerment — this is when you do not allow a person to use the abilities that they do have; or fail to help them to complete actions that they have initiated.

Infantilization — when you treat a person very patronizingly (or ‘matronizingly’), as an insensitive parent might treat a very young child.

His book provides 17 examples of 'Malignant Social Psychology' - I won't post them here due to copyright issues, but if anyone would like to see my notes which give all 17 examples feel free to p.m. me.

Again - these are very interesting and not specifically 'Dementia related' - I can apply many of them to a previous job and how a lot of staff were treated by senior managers!

Let me know if anyone wants the info.



N.

 

[sam.p]

Hello, this is my first attempt at posting a reply so here's hoping I get it right.
In my experience as an 'adult nurse' knowing what to say is dependant on time place and circumstance. Providing care for people with a coincidental dementia in an acute care setting is particularly challenging. I am sure you are aware of the concept of personhood; this I have found to be central to any attempt at communication. Knowing not only what makes the sufferer the person they are but also information relating to family members. Being able to talk about what is familiar, I have found, can calm a potential situation.

I agree that Validation Therapy is good, however not recommended by the DOH; there is a huge document discrediting it, of which the title escapes me. The Journal of Dementia care carried an article entitled 'Fancy Footwork' this I found informative and easily transferable to practice.

I intended to focus my dissertation on communication techniques for use with dementia patients, however there is a paucity of research evidence. What to say? I don't think there's an easy answer, if I can be of any help don't hesitate to contact me, I have amassed quite a library and may be able to help you with that all impotant quote.

 

[Dearth]

I agree that Validation Therapy is good, however not recommended by the DOH; there is a huge document discrediting it, of which the title escapes me. The Journal of Dementia care carried an article entitled 'Fancy Footwork' this I found informative and easily transferable to practice.

Nice to meet you by the way - I'm Neil... you're another one up late I see (or early lol) - I'll be off to bed shortly as I am on a Late Shift tomorrow.

Anyhow where was I?

Oh yes... the above quote - do you know a link for the 'Fancy Footwork' reference, so it can be viewed online?

And the DOH document... that's intrigued me - if you do know what it's called at some point, please post here as I would like to have a nosey at it!

Right... I can hear the pillow calling for me - not literally you understand... I ain't got a haunted pillow as far as I know!

Nice to meet you - look forward to reading your posts/replies.



N.

 

[Brucie]

My wife Jan was very involved in drama, professionally when she graduated, and in an amateur role later in life with our local drama group. I was involved at the fringes, being a shrinking violet, so to speak.

Some of what she did rubbed off on me though and I have found that if I treat each visit to her as an acting improvisation as far as the other residents are concerned then that appears to work in some way.

For example,

"D" is an old lady, late 70s, who has always been a bit of an organiser at the home, of other residents and also of things, furniture, ornaments, etc. So I seek her out, and always say "Hello D, how are things today? Is everything under control? Are the staff doing what you tell them?" and so on. She always smiles and makes some remarks about the state of things.

"P" is another old lady, sometimes prone to very minor violence with other residents. She is the one who once answered the main phone at the home when I called and would not let me talk to the staff in charge, at least not until I called a third time and said in an authoritarian voice "may I speak to the nurse at once please, this is the doctor!" Nowadays P is a shadow of that self, but she always holds out her hands to me when I arrive and calls me doctor - though she has no way of knowing I was the one on the phone who said he was a doctor. We have a short and totally meaningless conversation at the end of which I always reassure her "just sit there a while longer, everything is safe" and that seems to calm her. She is often fantastically worried about everything and a few words can make a huge difference.

"A" is a man in his 70s, who at the drop of a hat will sing "La donna e mobile" , in perfect tune and with all the correct words. He smokes throughout the day in a designated area. I always say "Hello A, isn't it a lovely day - how are you today?" and we exchange some very basic banter. He has arguments with "P" saying she is a rude, wicked old woman.

"P2" is a very small lady who has never uttered a word in the 5 years I have known her. I generally go up to her and ask how she is though, secure in the knowledge I won't get a reply.

"M" comes from Trinidad and comes in regularly for several days respite. She sings gospel songs all the time and praises her god and her good fortune. Early on whenh I first met her I thought I'd get into the banter with her and asked if she had any ganja [marijuana], only to be greeted with a horrified expression and a slap. Quite right too! Nowadays we have short but happy conversations when she is there.

"K" must be late 60s and can't really speak, but her husband visits daily, clearly under huge strain. I always talk to her whether he is there or not, and always compare notes with him. She expects me to hold her hand and she grips mercillously, with a huge toothless grin on her face. I ask her if the 'old man' is looking after her, or is out on the town or, on sunny days, if he has brought her bikini in. She is an endlessly cheerful person.

"I" is 95, still walking around wearing her best hat. She comes up to us and touches Jan's hand and says "Sad..." We once would have quite long conversations but she has deteriorated recently in her speech.

"S" is about Jan's age, 65, and she wanders endlessly. Her husband has shown me pictures of her in the 1960s and she was a stunner then, bizarrely perched on the bonnet of his Reliant Robin [he still has one!]. Not much time for speech with her as she has to be off to somewhere else in the building.

"L" is about the same age and would at one time cause huge amusement as she stole things from anywhere she could. If anything was ever missing her room would be the first place to check. It was a real Aladdin's cave. These days, she steals no more, but wanders up at vast speed and stares into my eyes, a ghastly leer on her face. As soon as I say "Hello, L, how are you today?", she leers more widely then turns on her heel and is off again.

"A2" is a big man and looks quite frightening because he advances on people and stands towering over them, with a fierce expression, and huge hands. At one time I avoided him, but one day I was afraid for Jan's safety as he held her hand, so I said "Hello A, have you met my wife Jan?", at which his face broke into a wondrous smile and he tried to reply. His speech is completely compromised so I never understand him, but I always smile when I speak to him and he always returns my smile. He always tries to make sure Jan is safely cared for, in his way.

"G" is the same age as Jan and his wife visits weekly. He fell some years ago and split his lower lip which has never healed, so he constantly dribbles. His chin also sits on his chest. I think he can speak but he does so in such a quiet whisper that I can never understand him. But if I ask how he is and if his wife is well, I alwsys get a smile, and he looks at me and tries to converse. I once invited his wife to lunch at my house as we were both at the end of our tethers. A couple of years later she told me that lunch had been a turning point for her, that someone had wanted to be with her for a while. As a result, she lost a coiuple of stones and now looks very trim in her jeans. She has found a companion which makes her life better away from the home.

Each one an individual, each one a different approach, each one in their own way, a gem.

I could have gone through the other residents as well, but I've rambled enough!

Main point is they are all individuals, though they have a serious illness. They deserve to be treated as such, and I believe that is so for carers of other residents to take on board as well. We are all in this together. At Jan's home, we all chat to each others loved ones, if the relatives are not there at the time.

 

[Dearth]

Bruce... I have to say when I looked at the length of your post I thought "Gordon Bennett... he's written an essay!"

But to be serious... I'm glad I read it... thanks for sharing.

It's made me think of a lot of people I have been involved with... again as you rightly say, all individuals... the only thing that each had in common where that they had dementia issues of one form or another... from Pilots to Seamstrisses, Fairground Boxers to Accountants... there are many, many examples and your post made me think of all these people as I read.

When I think of all the conversations (not all verbal or coherent... I'm sure you know what I mean by that too) that I have had with folk, the more I wince when I hear People with dementia being described as 'empty shells' or some other analogy... here's where I go a wee bit poetic for a sec. you will have to excuse this, but I used to be well into Creative Writing and it's still with me:

Even a glowing coal sheds some light

What I mean by that is, even towards 'the end' there's still that 'spark' in some people... that smile, or the look in the eyes... the movement of a hand.

Involuntary?
Coincidence?

You have to know people to make up your own mind on this... communication being the key thing... knowing when to see things that others can't see.

I'm finding this very hard to explain now lol, but anyone who's had experience of Dementia Care, either as a carer, professional, visitor, or a Person with dementia will probably know what I mean... and anyone who has an interest in this area WILL learn about it.

Hope that makes sense!



Thanks once again Bruce.

N.

 

[Lynne]

Bruce

Thank you for "introducing" me to some of Jan's companions. As you say, each one a gem, and all very precious to someone.

I think that posting would be very helpful & reassuring to someone approaching the dreaded decision to place their loved one in a care home when they have gone beyond home & family care.

 

[Brucie]

Lynne

I reflected on my post and your kind reply and found that, as a bloke, I was rather amazed to think to myself that in a funny sort of way I love all these amazing people in Jan's home. They are part of my family now.

My Mum [who never had dementia] will be somewhere in Heaven rolling round in laughter at my saying that! I was never a real family person in my previous life!

 

[Dearth]

I think that posting would be very helpful & reassuring to someone approaching the dreaded decision to place their loved one in a care home when they have gone beyond home & family care.

I fully agree with that statement.

Iwas going to type something else on the subject... but for once can't think of anything. I think that statement says it all is why Lynne - a visit to a care envirionment followed by reading Brucie's thread would certainly be a good thing I reckon if one of my Loved One's required care.



N.

P.S. By the way... I'm being genuine here - not simply trying to flatter - a compliment well deserved Bruce. My best wishes to you.

 

[mocha]

why can't he speak?

Thanks Brucie for giving us descriptions of different people in Jan's home. When you are only involved with one sufferer you really don't know how other patients are affected. My husband has never really gone on about the past except when we were out he always seemed to be saying that men we saw had worked with him at the ICI. I believed it for a while until they got too numerous. I know a lot of people work there, but really. Sad to say he has lost most of his coherant speech and it is very hard to see him trying to tell you something lengthy. He absolutely adores babies and toddlers and makes shopping in the supermarket quite a lengthy business. Luckily most young mothers are very tolerant. An ideal situation would be to leave him at a creche whilst I got on with things. I'll save anything else for another post as the trouble with starting is finishing. Best Wishes to everybody.

 

[jc141265]

Carer for many

Brucie,

I like you have gotten to know quite a few of the people at my Dad's home...on the topic of this thread I have to agree that its like acting with improvisation, you have to just go with the flow and my god at times you will not be able to say anything that calms the person down, makes them feel better, but as a step-mum thrown into the role of motherhood unexpectedly as well I think you just have to face the fact that some days you are going to be **** at handling the situation, you just have to forgive yourself, move on and keep trying to do your best, be as kind as you can be.

Another thing to remember is you don't need to lie. Instead change topics, change the drift of the conversation, start talking about yourself or ask the dementia person what they think you should do, (i.e. take the focus off their concern about the long dead husband they are looking for) remind them of something good that's going to happen (i.e. with 'A' at Dad's home I know she gets phone calls from her son, so I ask her about whether he has called yet today, and then start chatting about when that might be if he hasn't yet, or what a good son he is, if he has). I really cannot see the point of telling someone who is already confused about a love one being dead, or saying, 'oh for god sakes woman u r crazy thats why they lock you up in here'. Change the truth, afterall truth is all about perception, some might say that people are crazy thats why they are locked up, others would say that where better to be than in this place where they do all your housework for you, feed you, provide entertainment and keep you safe?

But now to the original reason I started writing this post. Brucie...don't you feel though sometimes despite the fact that these other people have become your family...that you just don't want to, hate having to stretch your caring and your heart any further. I find although I don't resent any of Dad's fellow inmates for squeezing their way into my heart, sometimes I just bloody wish that I didn't have to care about all these people, that it hurts more than enough just worrying about Dad without having all these other people, without having to see another one die. Sometimes I think that the hardest thing about visiting Dad is having to care about all the other people. Some nights when a sweet old lady again calls out to me 'Can you help me dear' I just want to go find some of the frikken staff and yell 'Enough already, will someone other than me please give a frikken damn about these people, will someone else please pay them attention, I am so tired of being the one who has to care' I am so close to breaking point, can't any of you see that I can't deal with anymore of this?????'

But then maybe that is a symptom of the kind of homes we have in my area, perhaps staff where Jan is at are far more there for the people who live there, or perhaps I am just extra freaked out by all this, because I have to say, I feel pretty much a minority in the home, there ain't too many my age wandering the halls! I feel out of my depth.

Anyway thats my whine. I really really need to go to bed now.

G'night

 

[Brucie]

don't you feel though sometimes despite the fact that these other people have become your family...that you just don't want to, hate having to stretch your caring and your heart any further

One thing I have noticed in everything in life is that it is all or nothing.

You can't just choose what to do in this or that.

I live just outside a tiny village. Jan once played organ at Evensong at the church while I read lessons and produced the monthly church magazine. Jan participated in the activities of the local drama group and I helped with technical stuff. Jan did the same with the drama group in the next village too - I did the photography for the dress rehearsals. etc. Now I'm helping the local amateur historian to write her books and catalogue the history of the area, and then I'm helping her record the memories of the older inhabitants before they are lost for whatever reason. We can't seem just do one thing.

Same goes for caring. If you care, then you seem to care, that's all. Whether you like how widely you have to spread yourself or not.

And somehow, you stretch to accommodate that.

Oh sure, it is exhausting, but on balance, I'd prefer to have to care more widely that I'd choose - rather than not to care at all.

All the good, all the nice, people I know are carers, generically.

And that goes especially for TP members.

 

[jc141265]

Well I guess then maybe you are better/kinder than me, maybe I don't 'care' as such but simply do what I know is right.

Caring I would think involves knowing the person, I don't know these people, they seem like either nice old people, but possibly before the dementia they were nasty (after all why don't they have any family visit?) and then there are the nasty ones that I always wonder if maybe had been nice before the dementia came?? I don't care for these people, I grow attached to them, I think I might see the real them, but basically I don't care for them, I am simply doing what is right, by looking out for them.

Most of them are fairly rude to me or my father ( they think he's a disgusting old man having an affair with this young girl, they hate how he yells and disturbs them, they talk very loudly about what they think of him/us, simply because they are half deaf and have dementia) some of them even try to hit him or push him over when he walks. I don't 'care for these people, I do what is right, I understand that their behaviour is due to the dementia, I forgive their actions, I smile when I think I see some of the real them, I am saddened that they don't get visitors, it upsets me to see them distressed, it shocks me when I find out that one of them has died. BUT, I don't care for these people, often I resent them, I don't like them for hurting my dad, I don't like them for being mean to him, I don't like them for being rude, despite the fact that I know that they are in the most part not at all responsible for their actions.

Obviously you Brucie are a saint, but I am under no false impressions, just like I am concerned for my mother always despite not liking the woman she is, I resent having to be so for people I don't know, don't necessarily know if I would like, don't necessarily like as the person they are today, people who take my time away from my father.

If there is one thing that residential staff should try to do I think is to not let people like me, who are almost beyond functioning sometimes trying to contend with their grief over their own parent, be further distressed by the problems of others. Fair enough, some might get a kind of joy from being involved with these other people, but all I can see is more horror, more suffering, more death, more pain, and it gets to a point that just the smell of the place makes me want to throw up.

Perhaps more people would visit their loved ones if they were protected from the heart wrenching experiences of having to try and console the unconsolable, i.e. the lady who just always wants me to take her home and then yells at me for not doing so, the other one who is continually searching for the way downstairs (there is no downstairs) to find her husband, the one who despite looking delightfully quaint calls me an f'n b and rams her walker into the gate, when i lock the gate behind me and don't let her out, the man who tells me that he is dead already, the other one who just yells 'Help me, help me, please somebody help me' all of the time...oh no thats right he died last week. My god, u tell me that this is a wonderful thing to 'care' for all these people??

I can switch off, I want to switch off...every body else manages to, I know I am able to, but the one thing I can't do is NOT do the right thing.

I am not a good hearted carer, I simply have rock solid morals. And I think its about bloody time some other people got some too so they came and saw their loved ones, so I don't have to, so that the staff would stop whining about how hard their lot is over coffee and biscuits while I provide the emotional support and attention needed by the 15 people in Dad's section. Whilst I am 'caring' for others, it makes it harder to care for Dad, I RESENT that he gets less of my time, that I find it difficult to be as cheerful for him because of these others.

Ok now Brucie its your turn to tell me why in actual fact, its good for me to have to do all this??