Before people get labelled as ‘a person with dementia’, they have the right to confidentiality, privacy and respect, like everyone else. When they become ill these rights often become confused and in some cases lost.
Here, carers discuss the problems they have in trying to maintain an ethical position towards the person with dementia and also do justice to the wishes that person expressed before they became ill.
One of the earliest conflicts for the carer concerns confidentiality. Several carers, particularly those who did not live near to the relative they suspected might be developing dementia, ran into trouble when they tried to get information about their relative from a doctor or social worker. One carer reported how a GP had insisted that he would discuss with her mother whether she should take medication or not although the daughter knew that her mother was unable to understand or remember such a discussion. She described how the doctor at hospital had asked her mother whether she minded her sitting in on their consultation and so got round the problem of confidentiality.
The friend her mother consulted about her memory refused to discuss his findings with the daughter.
Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.
The carer may eventually have to make decisions on behalf of the person with dementia and bear the responsibility of deciding on the best interests of that person. This is difficult for the carer who might wish that it was possible to ask for permission from the person the decision is going to affect.
Describes the difficulty of making decisions on behalf of someone with dementia.
Carers who have known and loved the person with dementia before they became ill may be very conscious that one of the results of the illness is that they have become negligent about things that in former times they minded about. Several carers felt sure that it was right to make efforts to see that their relative was neat and clean, even elegant if that is what they used to be. As dementia progressed it often became difficult to maintain their visits to the hairdressers, or to persuade them to accept changes of clothes. One carer described her acceptance that there were advantages in allowing her mother to dress as eccentrically as she wished, raising the possibility that too rigid respect for her former self was not helpful in coming to terms with who she was now.
Describes the unexpected advantages from letting her mother be seen as an ‘eccentric old lady.
A less difficult form of respect for the former person took the form of trying to continue to do things the way they would have liked it. However, several carers describe the problems they had when they tried to carry on activities which they had enjoyed with their partner or parent before the onset of dementia. There were visits to concerts ending in the carer losing their companion during a visit to the toilet. One carer describes how for a time she could let her husband continue to go to the golf club.
Describes making meal times pleasurable in a way he felt his wife would appreciate.
Has to decide whether in allowing her husband freedom she is taking an unacceptable risk.
Some carers worried that it was wrong to talk about a person’s condition behind their back. But many had felt it necessary to inform some outsiders that the person they were caring for had problems with their memory. In some cases, the result was an increase in support and friendliness from neighbours and local tradesmen.
Does not have a problem with disclosing her partner’s condition to people.
One carer who is a doctor describes the legal and medical reasons why he thinks information must be shared with other people.