By Adam McCullochWe need to get much sharper in matching the needs of people with dementia with the care homes where they will be placed
When someone leaves a hospital destined for a care home because they have been (vaguely) diagnosed with dementia their relatives are not given a thorough briefing of what sort of home is suitable and what isn't.
In our case we were handed a photocopied list of homes and told to get on with finding one because the hospital bed was needed. There was no attempt to advise, match needs or discuss preferences.
This really needs to happen because dementia is a condition with a wide
spectrum of symptoms. There is dementia where the patient seems
entirely unaware of their surroundings and has lost the powers of
speech and recognition. And there is dementia where all that seems
impaired is short term memory.
Self-funder
Maybe in our case this reticence to discuss placements was because the patient was a self funder ('oh, she owns a house.... you're on your own then boys!') or maybe it was because NHS staff aren't allowed or feel uncomfortable discussing the merits of various homes. Or maybe they just don't know.
I'm not saying staff were uncaring or unprofessional. This was not the case at all. But with dementia there seems a terrible silence in services, as if nobody has a clue what to do.
EMI homes (elderly mental impairment) seem to cater for people with more advanced dementia, whereas often people with milder varieties pop up in standard care homes where doors aren't locked at all times. It seems that the care home managers are choosing the patients to some extent; they are often seen at hospitals assessing elderly people.
Better information for relatives
But I would argue that this process needs to be far more scientific; psychiatrists would ideally assess, and social workers provide detailed information to relatives. Oh... I know why they can't. Because care homes are private nobody (NHS staff and charities) can be seen to elevate one above another; perhaps NHS staff would even be open to suspicion that they could gain some financial advantage for recommending one home above another.
The CSCI ratings aren't that helpful either: most homes are just given a '2' grading (out of 3).
Do patients settle?
Once the patient is in the home it is often difficult to discern how suitable the home truly is: often the person rebels, demanding to return home. After a while they 'settle'; or do they? Is there a serious effort to find out? Council placement advisers visit very infrequently, and have never met the patient before. Relatives, like me, are often left torn by feelings of guilt, not knowing how to improve matters, or what else can be done.
So, I know why things are the way they are, but overall it's a very unsatisfactory way to handle the care of people with a very significant medical problem. Yes, a medical problem.
Self-funder
Maybe in our case this reticence to discuss placements was because the patient was a self funder ('oh, she owns a house.... you're on your own then boys!') or maybe it was because NHS staff aren't allowed or feel uncomfortable discussing the merits of various homes. Or maybe they just don't know.
I'm not saying staff were uncaring or unprofessional. This was not the case at all. But with dementia there seems a terrible silence in services, as if nobody has a clue what to do.
EMI homes (elderly mental impairment) seem to cater for people with more advanced dementia, whereas often people with milder varieties pop up in standard care homes where doors aren't locked at all times. It seems that the care home managers are choosing the patients to some extent; they are often seen at hospitals assessing elderly people.
Better information for relatives
But I would argue that this process needs to be far more scientific; psychiatrists would ideally assess, and social workers provide detailed information to relatives. Oh... I know why they can't. Because care homes are private nobody (NHS staff and charities) can be seen to elevate one above another; perhaps NHS staff would even be open to suspicion that they could gain some financial advantage for recommending one home above another.
The CSCI ratings aren't that helpful either: most homes are just given a '2' grading (out of 3).
Do patients settle?
Once the patient is in the home it is often difficult to discern how suitable the home truly is: often the person rebels, demanding to return home. After a while they 'settle'; or do they? Is there a serious effort to find out? Council placement advisers visit very infrequently, and have never met the patient before. Relatives, like me, are often left torn by feelings of guilt, not knowing how to improve matters, or what else can be done.
So, I know why things are the way they are, but overall it's a very unsatisfactory way to handle the care of people with a very significant medical problem. Yes, a medical problem.
The feeling that you are on your own is familiar to anyone who has been through this.
At the moment there is very little sense that the community as a whole owns the problem of dementia. People just hope that they won't find themselves in the situation you describe because it is all too difficult.
Getting to grips with the funding, as the green paper is trying to do, is important, because it will focus people's mind on the fact the problem exists,is likely to effect someone in their family, and is going to cost money.
If all or most of us are actually paying an insurance to spread the risk of care charges we are going to be a lot more interested in the quality of what is being provided.
At present I suspect that many people who have drawn the short straw and end up with a relative in care put up with situations which are less than ideal because it is costing a fortune and if it was better it would cost even more!
Tomorrow I am actually going to a conference on the care of the elderly which is being organised by some of the local churches. They are beginning to realise this is an issue we should all be concerned with.
Currently what we have are imperfectly controlled private businesses where we put people, lose control of them and shut the door.
What I would really like to see is the development of small local community owned care homes,and outreach care to keep people in their own homes,with strong involvement from the local community.
As numbers of old people grow we will certainly need new solutions.
It is not a full solution, but improving the flow of information to residents and their families would help this situation. As discussed in this article about the care home market, the information from the regulator is very under-used, partly because inspection reports are not easy to interpret for most people. The growth of care home comparison websites will help drive quality by making better use of the information from the regulatory.
In many sectors, feedback from 'customers' can be used to help monitor and drive quality within a market place - there are however challenges in achieving this for the EMI / dementia sectors.
First of all, pay attention to respect for the patient, for patients with Alzheimer's disease occurred in a number of psychiatric symptoms and personality changes, such as suspicion, selfishness, hallucinations, delusions, family members should understand the disease caused by. To understand, tolerance, to give love. With a sincere attitude towards patients, patiently listening to the patient complained of nagging the patients not to willfully obstruct or recrimination. Try to meet their reasonable demands, and some can not meet to be patient and explained, should not have hurt the feelings of or damage to the patient to use the language of self-esteem and behavior, so that by the psychological damage, resulting in depressed mood, or even aggressive behavior. Even less because patients stubborn things and beat them insulting,