Interview 07- Carers of people with dementia

Brief Outline:

Gradual onset mistaken for depression. Diagnosis given jointly to husband and wife. Slow progression. Problem with restlessness and wandering. Very involved with the local Alzheimers disease society. He tries to involve her in decisions where possible. Initially prescribed antidepressants later given trial of Reminyl. Later benefited from sedatives and sleeping tablets.

Background:

Carer is a husband who has so far managed to care for his wife at home with respite care every 8 weeks. They have two children. She was diagnosed in 2000.

Further information about this participant can be found on socialcaretalk.org - Carers of People with Dementia

The doctor's honesty when diagnosing his wife with Alzheimer's means that they were able to...

 What I observed while we were waiting to be seen was, people going in and out, husbands, wives, family members going in individually, obviously to be, to discuss things with, the professionals. And I imagined quite incorrectly that what was happening was that they were being given information or a diagnosis separately from the, from the patients, but that turned out to be incorrect.

 

But I suppose the, second, reason was I suppose I thought again incorrectly perhaps that consultants would be reluctant to, give a completely honest diagnosis when you're dealing with an illness which is, which is pretty distressing to contemplate, where there is no apparent, treatment or cure for it. And the long term prognosis is a pretty grim one and I just felt that maybe they wouldn't want to do that quite directly and openly, but that didn't prove to be the case.

 

And then when we eventually went in it, was, to see the consultant, it was just the fact that without any preliminaries, he simply came straight out with the diagnosis, not wrapping it up in any way at all, and causing us both, quite naturally, considerable distress. I understand now I think why he was doing that, but it was quite a shock at the time.

 

Yes. Why do you think...?

 

Oh, I think that, if you're less than honest, if the patient is not made aware of the nature of their illness then it simply cuts you off from a great deal of the, support and advice that you can get. I mean not least, it makes the future dialogue between the consultant and you and the patient, a less than honest, and therefore a less than helpful, dialogue.

 

And I just think that as far as we're concerned, everything that has flowed from that moment in terms of, medical treatment support for both myself and [my wife], has stemmed from the honesty and the directness of that first diagnosis. So I'm, now absolutely convinced that in almost any case that I can think of you really should be as honest as you can. And then you come to terms with that, and I believe most people will find a way to come to terms with it, and then you can kind of move forward in terms of, leading your life as naturally as you, as you can.