How could non-specialist health care professionals communicate better?

[Prof Carol]

Hello everyone,
My name is Carol Haigh, my colleague and I work at Manchester Metropolitan University and we are doing some research into how health care professionals who are not specialists in dementia care communicate with patients and their family and friends. The primary outcome of this research will be the creation of educational tools to help doctors and nurses communicate better. We are particularly interested in those health care professionals who work in the cancer field but we'd like to hear what your experiences or concerns are. We'll make sure your anonymity is protected at all time but we would like to use quotes from what you tel us in the learning material we develop.
Please give us your opinions.
Thank you for your help

[jenniferpa]

Just to note: Prof Carol has permission to post.

[nitram]

You may have seen this already.

http://preview.tinyurl.com/7erazux

Tinyurl with preview, original link too long for forum software.

[jenniferpa]

I think Carol is looking for personal experiences and concerns.

P.S. Nitram - I don't think it's the link length that is a problem but something to do with the original link construction as this works.

http://www.agelessdesign.com/InfoID/...anage/Zoom.htm

[nitram]

Agreed the request was for personal concerns but the article represents the author's personal concerns.concerns.

My link contains a space
.....FolderID=104%20&SessionID....
Your's doesn't
.....FolderID=104&SessionID.....

(ASCII code for space is 20 in hex)

Over to IT support

[jimbo 111]

I do not have a vast experience , but my wife suffered with Alzheimers amongst several other ailments that affected her adversely
During the latter stages of her illness we were often at clinics and hospitals and had to deal with many professionals who were not particularly familiar with the problems caused by dementia
Because of her illness I always had to ask that I remain with her , this sometimes caused problems because they would insist it was not appropriate ,or their policy, I then had need to remind them that my wife suffered with AD and they were risking the possibilty of adverse reaction from my wife, which would only be wasting their time and upsetting my wife
When they asked questions , if my wife could not understand , she would always look at me and although she would not say anything I knew she wanted me to answer for her But what was important is that sometimes ( and far to often) if the person asking the questions then started to ask me by saying "Does she - or- Will she
my wife for all of her lack of comprehension somehow seemed to sense this change ,where they were asing me the questions rather than her,and her reactions were often forthright Why are they asking YOU the questions
It was then difficult to explain to her , after this she would invariably say " that person does not like me and she would be upset
It may not seem an important issue , but to those who are familiar with the problems of caring , it can mean additional difficulties in getting someone who is already opposed to any medical appointments
I am sure more members will be able to give you instances in their own experience that will be of assistance to you
jimbo 111

[Jancis]

Hello Carol,
I don't think my uncle had many 'dementia care specialists' involved with his care to be absolutely honest.

I'm sure many of his professional 'carers' were well-meaning but they didn't appear to be 'specialists'. I'll give one example if I may which involved my relative's appointed consultant psychiatrist.

This eminent individual was involved in many Best Interest Meetings that my family attended with my uncle present. He was brusque, remote, arrogant and showed no human concern for our relative or indeed myself and my family. When I said we really didn't like the home that had been chosen by the authorities because it looked and smelt like an institution he said that uncle would have no conception or awareness of his environment, that he would only get worse and it really didn't matter what the environment was like. At that time we knew very little about the disease. It was awful as the matron and manager of the care home were also invited to the meetings and naturally took great exception to our criticism.

I disagreed then, and I disagree now about environment as I believe it can and does matter to some people suffering from dementia. My uncle is now in a different home with a different environment and he has been mentally stable since his move. In my own mind I believe we have proved this so-called specialist wrong - but I do understand where he was coming from with hindsight and having gained more knowledge of dementia. But my point is that the psychiatrist's lack of ability to show compassion caused us so much unnecessary distress. And I should add that the consultant's comments were made openly in front of my uncle. Uncle didn't appear to take in the comments but how does anyone know what a person with dementia takes in and understands? My uncle was suffering extreme depression and had been sectioned twice when the psychiatrist made this assessment.

As a result of the meeting I've sited, our lives were turned upside down. We challenged the NHS and the local authority and after many months Social Services involved the Court of Protection as they appeared to run out of ideas to stop us from trying to battle with the 'professional' psychiatrist. Fortunately the COP's involvement saved my uncle and our family in many respects - the ensuing story is too long to relay here.

Best wishes Jancis

[ggma]

My Mother has had to go to A & E several times, and also had a longer spell in hospital after breaking her hip.

My main concern was that the Dr's and nurses both in A & E and on the ward did not understand how Dementia affected my mother, that loss of memory means every day functions are very difficult and put her at risk. Mother could not understand what they asked her, she could not remember what had happened and why she was there, she could not remember any instructions, (like to pull a cord if she needed anything, do not get out of bed!) Was not able to remember to drink fluids, was frightened by strange surroundings and thought that people were inflicting pain on her so fought and screamed for help, and many other things that would not apply to someone who did not have dementia.

Putting together some training material sounds a great idea, but lots of lip service has been paid to dementia training for professionals in the past, but it has not so far made any difference. I hope you are more successful.

[Izzy]

I don't know how relevant this is but my husband took part in a project called Patient Voices. It involved dementia sufferers talking about their lives pre dementia. The resulting film clips were intended to be used in the pre and in service training of general nurses.

This is the general link:
http://www.patientvoices.org.uk/

This is the link to my husband's story:
http://www.patientvoices.org.uk/flv/0548pv384.htm

This is another of his group's stories:
http://www.patientvoices.org.uk/flv/0551pv384.htm

Sorry if this isn't relevant.

[sussexsue]

I do not wish to be disrespectful to the many members on here who suffer with Dementia but are articulate and can respresent themselves very well. I am only writing from personal experience with my mother, during the period from moderate to advanced dementia. A few things spring to mind.

Try and communicate as much as possible with the regular carer. The person with dementia can appear very articulate, but could easily provide the wrong information, often the exact opposite of what they should be telling you.

The person with dementia will have little concept that they are ill.

Do not ask questions. They will try and give you an answer as that is what is expected, but is unlikely to be correct.

Do not put everything down to Dementia. Dementia sufferers are just as open to other illnesses.

Do not spend time explaining what is happening, what is wrong, what the treatment is. It will just add to the confusion of the sufferer.

Treat them with respect, and continually reassure that everything is OK. Along the lines of "you are ill, you are in hospital, we will make you better".

Remember that in the head of the dementia sufferer the only thing that is wrong with them is they sometimes forget things. They can often be totally unaware of the reality of their condition, including facts such as the inability to walk.

Be aware of an almost total fixation of "going home". However home is actually a place from their past where they were happy fit and well - it no longer exists.

Be aware of sundowning and observe the person both in the morning and late afternoon in assessing discharge.

Do not presume that because they look capable of doing something, they are actually capable of doing that thing.

Putting food in front of them does not constitute eating. Packets need opening. Encouragement is needed to eat.

The above all relates to several stays in hospital for my mum over the last three years.

[piedwarbler]

In my experience they need to actually understand and have training on dementia before they start to think about how to communicate better. Sensitive professionals will agree to meet family separately, so as not to upset the sufferer. I had a CMH tell Mum all sorts about her illness in front of her, no way was she well enough to be told, he terrified her. Doctors have been very very obstructive in getting a diagnosis because they took Mum's confabulating at face value and just didn't stop to consider dementia.
Professionals talk too fast in general. Mum processes very slowly and people use too long sentences and move conversations on before Mum has had a hope of following. They also often shout. Mum is not deaf.
Mum's SALT therapist has been the best of a bad lot. Even her neurologist communicates clumsily and insensitively.
Sorry to sound critical. I would love to be involved in designing a training package. As a teacher of English I think I have Some skills to offer.

[piedwarbler]

Mum had cancer treatment and dementia concurrently as well , if this helps I can tell you more.

[Prof Carol]

Thank you all for the very helpful comments you have offered. For those of you who have expressed an interest in being involved in a deeper way - thank you, we will be in touch.
I appreciate the time everyone so far has taken to help this work develop
Caz

[strawberrywhip]

My experience is that EMI care homes..although supposed to be specialists in this field..do not take the long view and look at the different stages of dmeentia and prepare the family as time goes on..they deal with day to day issues, but shoudl also take an overview.
For example Mum in law was in an EMi home for 5 years..she died 2 weeks ago...in her sleep having gradually lost weight over a long period of time and then been put on pureed food we discovered..
2 days before she died we discovered she was on the Liverpool care pathway, her son flew over from Australia but she died before he arrived. No reviews were ever instigated by the home and no one took the long view. We knew what would happen at the end but I had to instigate end of life discussions...and no one mentioned she was in the end stage of dementia. which with better monitering and communication was obvious. Carers were kind..but clinical leads simply didnt get involved..and this was a home registered for EMI patients. Scary! Happy to help with any research

[FifiMo]

I have provided details of my experiences before on a similar thread and have repeated it here in case you find anything helpful towards your research. I'm more than willing to become more specifically involved if you wish...

In my experience I have found that general wards are not suitable for dementia patients who are mobile. They are already confused about the unfamiliar surroundings and this, coupled very often with sundowning and the need to get "home", means that they will abscond off the ward. My mother got off her ward regularly - was found outside at 2am, set off the fire alarm in the middle of the night as she went out the fire exit 3 floors up, and one evening made it outside and on to a bus! To be fair to the staff, particularly on an acute ward, they are not resourced to give the dementia patient the time that they need in order to settle them. It is one thing to understand and have the knowledge about dementia, it is another thing entirely having the time to apply them.

It is not just the staff that are challenged by dementia patients, other patients and their relatives are too. When my mother was in hospital for a prolonged period of time relatives made formal complaints about her - for what reason - for her speaking during visiting times!!! She wasn't aggressive - just a friendly chatty lady with dementia! During the night her restlessness and talking and shouting out made it difficult for other patients in her ward. So perhaps one aspect to be considered might be placing the dementia patient in an area where there is least disruption perhaps? Single room perhaps? Relatives asked to bring in some things that might be familiar to them? One thing they shouldn't do in my experience is put them in a ward on their own with an unconcious patient - thinking that the patient wouldn't be disturbed ! They did this to my mother and she thought she was being forced to sit with her mother who was dying and was distraught by this. The staff however paid no heed - think they thought they had a temporary "fix" on their hands.

My overall view of what should happen is that the dementia patient is best served in the elderly mentally infirm ward, or similar, if you have such a ward in your hospital. These wards and staff are set up and staffed to deal with the patient quite frankly. They are normally secure wards and are more tolerant of such things as walking around during the night, wanting to go "home", just wanting company and a chat. I know that this would probably mean them having to be transferred to another consultant but in terms of smooth running of the hospital, would this not be the preferred thing to do for all concerned?

To my mind what is apalling is to try and manage the dementia patient by use of a chemical cosh! We all know that it happens and to my mind it is wrong wrong wrong! And whilst i'm on my high horse, the staff on the ward need to communicate with relatives of the person with dementia - of all things that I could advocate this would be the number one thing you should insist on. As much as they might have medical knowledge I can almost guarantee you that they have no knowledge about the needs and the challenges of the individual and how to deal with them. Sometimes the arrogance of the staff is what frustrates relatives and lack of communication, particularly hiding behind such excuses as data protection and patient confidentiality, particuarly when it is clear that the dementia patient cannot in any way speak for themselves, is something which they really need to address. Relatives are more than willing to help, to share information, heck we'll even come and sit through the night with them if it is that bad (we did this more than once when the staff couldn't cope and had had an influx of urgent cases) - we do afterall have the best interests of our relatives at heart.

I do appreciate all the work that nurses and doctors do and I don't blame them with all the stresses and demands of the other patients on general wards, if they find that they don't have the time to give the dementia sufferer all the individual attention that they need. Maybe it needs to be addressed in another way perhaps. Maybe dementia becomes the primary illness every time and a suitable ward is found based on this and not perhaps the other "illnesses" that they are presenting with? I will be interested to hear what the outcome of your study is - that is if you feel you will be able to share some of it with us here on TP. I do hope so.

Fiona