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Carers of people with dementia

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Most carers had known very little about dementia before the diagnosis. Those who had heard of Alzheimer's disease, or dementia, usually thought that it was simply becoming forgetful or vague in old age. Few were aware that dementia could strike in middle age and some reflected that it might be better not to know in advance. Even those who had some clinical training in dementia, including a doctor and a nurse, said that they had not understood the impact of the disease.

 

Had thought that dementia only affected elderly people.

Had thought that dementia only affected elderly people.

Age at interview: 62
Sex: Female
Age at diagnosis: 50
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Not a lot. I thought that dementia was something that very elderly people got, equated it with senile dementia and that as bits of our bodies age so of course the brain ages and I had no, idea that it could attack someone in their forties, my husband was 49 when his started. Well now of course I know it can attack even earlier than that, so I associated it with somebody probably in their late seventies and eighties and I think I had a picture of someone sort of quietly losing their marbles in a corner, you know like grandma's in a corner and she isn't quite with it, you know.

I did not know anywhere near enough and of course now I realise people generally don't. For example my cleaning lady who comes in to help, she said 'I had no idea that Alzheimer's was like this, if I hadn't been so near it for so long.' So I think unless the illness strikes someone very close to you, you don't know what it entails and I think it's the changes of behaviour, the personality which I think are the most unexpected features. Because, yes people in the olden days would just tuck folks away or put them into an asylum, or maybe people never just got to live that long in some respects, so there weren't so many of them around.

Sometimes people's most pressing questions about the disease (how will it progress?) cannot be answered with any certainty. This can add to the carer's feelings of confusion and isolation. However, almost everyone said that they had also needed practical information and could not understand why no-one had told them what they needed to know at an early stage.

 

It would have been hard to predict how dementia would affect her mother. Wishes she could have alleviated her agitation.

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It would have been hard to predict how dementia would affect her mother. Wishes she could have alleviated her agitation.

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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How long it was going to be. Because, even now I mean, it's seven years since she's been in the home, there's no particular end to that you know. So it's a long time, so we're talking now, if I date it to the time that (children) was born which is sixteen years, which is when I first knew there was something. Or, I can date it now, at the time I thought she was depressed and I think I thought that for the next couple of years that she was severely depressed but that's fifteen, sixteen years with no particular end in sight. 

So that's a big chunk out of my life, certainly a big chunk out of my children's life and it's getting to be an enormous chunk out of my mother's life. So yes, it's the length of time that it could go on for. And I did read that but somehow it didn't, I think I remember seeing it could go on for twenty years in some literature that I read. But you don't take that in, the time.  

The other thing was that I wished I'd realised about the unhappiness that it causes really for the person who's demented and that spills out into everything. The fact that just you being there is not reassuring so all the time and effort that was spent into going and making sure she was alright, sorting out things for her, sorting out her cupboards, sorting out the fridge, all that.  None of that was actually, was she able to be reassured by any of that and it feels like it's a constant on-going one-sided thing.  

I mean even, she'd phone me in a frantic, saying, when she was here I couldn't go to the loo without her saying - it's like a toddler, you know - ' where are you,  where are you?' But then seeing me didn't necessarily make it better, it sometimes did. Sometimes there would be a few minutes where it would be reassuring but my saying things like 'Don't worry, it'll be alright.' none of that. I don't know if it would have made any difference but I spent a lot of time trying to think about how to reassure her and it actually didn't make any difference at all. 

Not in terms of her state of mind or'I know it's not'because now I've seen other people with dementia and you know I've seen people's progression with dementia and so I know it's not the same for everybody but her particular form was of being exceedingly agitated. And this constant, constant seeking for whatever it is, I had no idea that, that would happen. I don't know if it would have changed my mind about how I dealt with it, I don't know. But I didn't know that was part of, or could be part of, or, yes, possibly you can read about it but actually living that anxiety is a completely different thing.
 

Many were confused about the divisions between statutory authorities and the roles and responsibilities of staff and did not know where to turn for advice. Carers suggested that an ideal package of information would include contact details for the Alzheimer's Society (which supports people with all types of dementia, not just Alzheimer's disease), local information about support groups, practical details about social services, financial benefits and allowances, respite care and medical information about the possible progress of the disease.

 

Had trouble getting information and found that professionals, who were presumably familiar with the system, did not explain enough.

Had trouble getting information and found that professionals, who were presumably familiar with the system, did not explain enough.

Age at interview: 60
Sex: Female
Age at diagnosis: 72
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I think it's the lack of information. I mean real information, not just hearsay, that's quite hard at times. I mean I suppose if you've got as far as having a professional carer or care help, then you must at some stage have, have been through whatever systems there are for helping, so they probably know about it anyway. But I didn't know what there was. I didn't know what the disease entailed. I didn't know if, I did know there was no cure. I did know at that time there was no treatment. I didn't know there was any care, you know respite care available until it was far too late, even if it had been suitable it, it perhaps might have been earlier, I don't know, before the real fear and terror set in.

I think really they should just not assume that everybody knows what they're on about because they're all in their particular sphere, because they all seem to know each other. And they rattle off these names of people as though we've all heard of them, and we never have, you know, I think sometimes, not all, and this is, this is, this is a generalization and probably not true of many of them but some of the ones that I've met assume that you know there are various services for this and various services for that. I didn't know I could get a, a thing to go over the loo, so that my husband could sit properly without falling off. I didn't know I could have little handles on the door. 

I didn't know I could have got a wheelchair. I didn't even, I didn't even know there was a community psychiatrist. I don't know why I didn't know that. I suppose it never occurred to me to ask. But certainly nobody told me. I don't know whose job it would have been to tell me, I don't sort of suddenly think, 'Oh they should have told me', I don't, I don't believe this mysterious they, one has to take responsibility but it would have been nice to know from somewhere that this, there was somebody I could have spoken to, perhaps a little earlier than, you know two days before he says 'OK, he's got to go in'. But maybe that's what they do, I don't know.

Those I did meet were perfectly nice and helpful when I finally got to meet them. So I would say make yourselves known. Or make public your availability, bearing in mind that carers don't go out very often, they're stuck. Maybe, but I don't know how they could do that.
 

People who had later stumbled across the information and support provided by the Alzheimer's Society were impressed, but often amazed that no-one had told them about it earlier. The Society's factsheets, leaflets, booklets and outreach workers were widely praised. (Also see 'Sources of support').

 

Found an Alzheimer's Society booklet on caring for someone with dementia very useful.

Found an Alzheimer's Society booklet on caring for someone with dementia very useful.

Age at interview: 60
Sex: Female
Age at diagnosis: 72
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I went to the library and just looked it up. Later I joined the Alzheimer's Society and they had some very, very useful leaflets and the only really useful book I have every had came from them, and I can't remember what it's called, but, it's the standard one that they issue. I think its called 'Caring for Someone with Alzheimer's' or something like that. Something you know fairly basic for the subject. 

And that was useful. And that it listed most of the symptoms that people had and explained that they didn't have them necessarily in that order, and they didn't all get them all. And that the stages of the disease, how it developed, that it went into perhaps three, well four including the really terminal stage. I think those who are lucky die of something else first. But I didn't know anything about it.

 

Initially they found a fair amount of information themselves. Looking back he thinks they should have joined the Alzheimer's Society earlier.

Initially they found a fair amount of information themselves. Looking back he thinks they should have joined the Alzheimer's Society earlier.

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But in parallel to that, you know we did what a lot of people would do, we went to Waterstone's and we bought several books. Connie herself bought a book on dementia which is quite interesting. It is very helpful, very good indeed. I also bought several things. So quite quickly we'd got the theoretical background to it and because of having a contact, a very close friend indeed who was a social worker working in this field we were getting information not within this locality but we were getting quite a lot of information and help sheets and so on. So we found out quite a lot ourselves about it.

After about nine months when I realised that nobody was really going to come trotting to the front door to tell me things and ask how we were, I needed to reach out to find out more at which point we joined the Alzheimer's Society. And that, the Alzheimer's Newsletter and various other things, I send for all their literature, so within about twelve months we'd built up quite a bank of information about the disease and about the process of caring and dealing with the various issues, legal, financial and so on.

So most of it we did ourselves but gradually as we've come into the system we have been able to tap into those sources but initially it was a bit skimpy. I hope that's not unfair. Now I would know what to ask for but I didn't know that you could ask and that's surprising isn't it, I mean I would have thought I would have known my way around the system but I actually didn't. So there you are.

Well as I say it took me a year to get round to the view that actually you do need to tap into all these sources of support and help and I regret that I didn't do that for nine months to a year. Things changed really radically for us once we did that and I wish I'd done that. But I guess that's how it goes, that it does take time before you begin to understand that you need to look outwards towards other supports.

I suppose we're the kind of people may be, like yourself, you've been used to sorting out your own problems without going to outside agencies and it was a matter of pride that one could do this but that was kind of misguided. I try, if I meet people new to this situation I try to say this to them but I think everyone has to go through it in their own way. But I do regret we wasted a year really, I don't suppose it made that much difference in the end but I think it would have been useful if we'd got involved in the Alzheimer's Society and other things much earlier. But in general I don't think there are too many regrets in that way.
 

Many people described being left up in the air after the diagnosis. Those who had found support groups, or other ways (such as the internet, books, newsletters and articles) of finding out about the experiences of other carers talked about how helpful it was to find out how others had coped with problems.

 

Describes feeling dropped into thin air after the diagnosis - hospital test results were provided by letter but seemed irrelevant to her most pressing problems.

Describes feeling dropped into thin air after the diagnosis - hospital test results were provided by letter but seemed irrelevant to her most pressing problems.

Age at interview: 62
Sex: Female
Age at diagnosis: 50
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But the interesting thing to me was, at the point of diagnosis and at the next appointment at the hospital [when] it was confirmed that this was the most likely scenario, we were just kind of dropped into thin air. When I compare what a cancer sufferer might have, and their family, at the point of diagnosis, you know, where for us was the back-up of either a specialist nurse, or a telephone number to ring, or, I didn't even know of the existence of - well, what was then - the Alzheimer's Disease Society at that point and I certainly had no idea where a local branch might be. 

And I think we were all in such shock we needed people to come to us to help us, rather than ourselves having to go out in the highways and the byways to find help and I think that's happened to a lot of carers and a lot of patients, that they are, at the point of diagnosis, just turned out into the street and dropped into thin air. We went back to the hospital many, many times over the following two years and for umpteen psychometric tests. I was given my husband's scores and his results were conveyed to me by letter, but actually what I wanted and what I wasn't getting, were strategies for everyday living and how to help my husband to celebrate what he could do, rather than to get depressed with what he couldn't do.

Things like, given that the damage in the brain is going to be different possibly for every single Alzheimer's sufferer, what activities should he avoid in case it produced not only danger but frustration and anger. And what parts of the brain were still intact and what kind of activities therefore would be pleasurable for my husband and not give rise to frustration, loss of confidence and then difficult behaviour which I was left to handle.
 

 

Has learnt a lot about how to cope through other carers and a helpful CPN.

Has learnt a lot about how to cope through other carers and a helpful CPN.

Age at interview: 57
Sex: Male
Age at diagnosis: 56
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I think that I could have received a lot more support and a lot more information which indirectly could have helped my wife because once I started reading about dementia and understanding some of the problems then I could face, not face my wife, but I could face the situation a lot easier.  

And certainly reading from other people's experiences like for example once my wife didn't get out of bed it didn't enter my head at all that she might have forgotten where her clothes were. And I read an article in a magazine where somebody had the same problem and the wife had actually got the clothes out for her husband and put them on the bed and helped dress him. 

And that hadn't entered my head at all that my wife might no longer know where her clothes were or indeed what sequence to put her clothes on. And that simple little article helped me a lot because I then got clothes out for my wife, when she wanted to get up, helped her dress. And that was because, simply because through the Net, through purchasing books and booklets I found out that information.  

So I think that simple little experiences from other carers can make the carer think the way in which they can best help the sufferer and it's trying to, I found that I had to try and think on behalf of my wife and for my wife because she was now longer, no longer able to think for herself. And it's putting yourself in their position and trying to understand the difficulties that they have then I found the more you can obviously help them.

Most helpful I think I have found reading experience and articles of other carers. I think that, just the simple little experiences like I previously mentioned about the clothes, about food. They're the most helpful things I found.  

I found the support from the CPN tremendously helpful once we had a CPN allocated. And although the CPN theoretically is for my wife he spent a lot of time giving me support and help. And I got a lot of advice, a lot of support from him, so I think the two most helpful things have been reading articles and the support of the CPN.

One man had seen his mother-in-law develop Alzheimer's disease several years before his wife was diagnosed. Because the progression was very similar this helped him to cope. A woman whose husband was diagnosed with an early onset dementia had a friend whose husband had been diagnosed 20 years before. The friend was very helpful in steering them through what to expect.

 

Believes that he found it easier to cope because he already had some experience of dementia in the family.

Believes that he found it easier to cope because he already had some experience of dementia in the family.

Age at interview: 72
Sex: Male
Age at diagnosis: 62
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Well I knew, I'd had the experience of my mother-in-law who, I'm trying to think when she had breast cancer, in '83, she survived in her own home until I think it was 1987. We went on holiday to my old boss in Portugal and her, my mother-in-law's niece who had this retirement home had her to stay while we were away. She was still living on her own at [village] where she'd lived for years.

And it was only then that they realised that she wasn't really capable of looking after herself any longer. We didn't really pick this up. We found odd things like the fact she had a job to manage her bank account, finances and things and my wife became a joint signatory. But that wasn't surprising because her husband till he died, and he died in, early on in 19 - daughter was born in '61, late '60s, without looking it up I couldn't tell you the year. 

She'd never had to look after the finances so it didn't come naturally to her at any rate. So we didn't really expect anything there. It was only when she came, we came back from the holiday and we went in the house and discovered things like saucepans popped in a cupboard with very burnt bottoms and things like that and began to realise there was a problem.

So I learnt a bit then and then I learnt more from my sister's point of view because I used to ring them up to see how they were and they, I could tell that one couldn't remember who was supposed to pay the phone bill who, they tried to share it between them and they got very confused and in the end they ended up with summonses because the wrong person hadn't paid the bill and things like that. But theirs was not dementia in the same way as my mother-in-law so I suppose I, I, by the time my wife began it in about '92 I learnt quite a lot from my mother-in-law, I was beginning to get a feel for it. Nothing on the technical side obviously!  

But I suppose that probably helped quite a lot in that I could see that she was following her mother very much in the same sort of way. And that probably helped me cope with it because we'd had to cope with mother-in-law, I mean OK she was with her niece from '87 for a couple of years and then the niece had to give up the small residential home and they got her in to a very good, a particularly good nursing home in town because she'd lived in that area all her life and her friends used to go and visit her until they didn't know how to cope, they didn't get, when she'd chat away saying nothing, this sort of thing.
 

On the other hand, more often those who had known someone else with dementia said that the personalities, or the progress of the disease was so different that their prior knowledge was little help. A doctor said that he had not recognised the early signs in his mother, even though he had studied neurology and his grandmother had also had dementia.

 

Was unable to spot early signs of dementia in his mother even though he is medically trained and had seen his grandmother with dementia.

Was unable to spot early signs of dementia in his mother even though he is medically trained and had seen his grandmother with dementia.

Sex: Male
Age at diagnosis: 65
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I think I said I'd seen somebody with dementia before in the family from, a non-expert point of view, just as a kid seeing the way that it sort of reduced an adult to somebody who was quite obviously simple if you like. And one of the, most remarkable things is the memories that I have of my grandmother having dementia, some of the behaviours that she exhibited then that I can still remember have been reflected in what's happened to my mum, very much so. 

Obviously because I'm a doctor I went through medical training and did things like neurology and geriatrics so I've come across people with dementia before so I have some idea of the sort of physical and clinical aspects of it. But you know that didn't stop me missing, missing it in the early stages with my mother.

Information about dementia could be upsetting but nearly everyone indicated that it was best to be forewarned. Some said that they would have handled things differently if they had known more about the nature of the disease and regretted being short tempered when they did not realise the effect of the illness. A man looking after his wife described how information needs change: initially he wanted information about dementia, but then sought information about how to be a carer. He says that he wishes he had tapped into the sources of support earlier.

 

Advises others to get information as soon as possible after the diagnosis.

Advises others to get information as soon as possible after the diagnosis.

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So I did get on the computer, on the Internet and it was only then that I found out some of the devastating effects it does have on people and their lives. But certainly had I not had the Internet I don't know where I would have found the information out really, as much as I did. Because I did find out, like for instance I found out about the Alzheimer's Society which I've now joined but I didn't even know such a simple thing as that.

I just didn't know anything at all. But I soon learnt, I soon learnt from other people. I mean some people that I spoke to had been looking after people for ten, twenty years, I mean that seemed unbelievable and then I found out that you don't die from Alzheimer's. I just got more and more information like that which really I suppose is only basic but it did help in the fact that I knew some of the things that might come along and some of them certainly did come along. 

Well try and quickly get as much information as you can. Certainly try and find out all your rights and the person who's got Alzheimer's, their rights, pretty quickly. And I think the people who are supposed to know all these things really should know them better. I found looking after [name] not too much of a problem, tiring at times. The biggest problems I had was with outsiders, trying to find out things, trying to get things done. As I say we like, we all need us feet doing but to wait four to eight weeks to get somebody's feet done is absolutely ridiculous.  

 

Would have been more patient with her husband had she known more about the nature of the disease.

Would have been more patient with her husband had she known more about the nature of the disease.

Age at interview: 52
Sex: Female
Age at diagnosis: 57
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The other thing that I haven't mentioned which was a terrible trauma for us, if it wasn't Alzheimer's and we're not really sure what it is, well now, that opens up huge possibilities for a wife who is grappling with horrendous possibilities, its all very, very early stages. I actually started bullying my husband and saying 'Look, will you try harder? If you try harder, you might not do these things wrong.  If you try harder you might remember x, y and z'. And that was horrible and I bitterly regret that.

You know if I had known more I would never have put [my husband] through that. And I think I, I caused my husband to doubt the validity of what, was he ill? Was he well? Should he go back to work? I certainly doubted it because I was not being helped to find a proper diagnosis. That was dreadful. So yes, I, I wish that I had just gone on saying 'Look he's ill, will somebody listen to me?'

 

His information needs changed over time - from physiological and psychological explanations to how to manage the caring role.

His information needs changed over time - from physiological and psychological explanations to how to manage the caring role.

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Initially I think you're looking for an explanation of what has happened so I wanted to know what dementia was, exactly how it affected the brain, in quite a lot of detail you know, I wanted to know that kind of physiological and psychological data and I got that and that's not difficult to get hold of. There are several books that gave me that information. I also found it, I was going to say - I haven't thought about this so I'm having to kind of reflect on this - all that material about the role of the carer and how he or she can play the role, what the issues are and so on, at that stage I think passed me by. It took a long time before I began to reflect on that, other than just the day-to-day coping way. I can remember someone coming and saying 'Well you ought to think about power of attorney.' All this sort of went in one ear and out the other really. 

It's the last few months that I began to think more and more about information about the role of the carer and how it can be played effectively and so on and so forth. Which I suppose is why I wanted to be involved in this project. So initially it was 'What is dementia and where does it come from?' You know you begin to think 'What are the explanations, what are the factors here, is it genetic, is it to do with the accident, why is it happening to my wife?' That was what I wanted to know initially but you know now that's neither here nor there, it's about how we can live our life most effectively over the next few years that I want information about. I like talking about that sort of thing and that's why I belong to carers' groups and so on 'How can I play my role as well as possible so we can both go on having a pleasurable sort of life together?'

Last reviewed February 2020.

Last updated March 2015.

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