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Carers of people with dementia

Sources of support

People who are looking after a family member with dementia usually find that they need support from others, even if they have a good care package from social services (See 'Assessments and care plans'). Children, siblings and other members of the family were often willing to be called to help at crisis points, or when difficult decisions had to be made. We were also told of many examples of friends and neighbours whose kindness had made it possible for the person to continue to live in their home.

Friends who were willing to pay regular visits (sometimes as part of a rota organised by the main carer) were often highly valued because they helped maintain social life for the person with dementia. Some carers said that this was even more important to them than the washing, dressing and basic care available from social service.

When it came to practical and emotional support many carers said that the most useful advice they had received was from other carers. A husband explained that although he found the information from the Alzheimer's Society interesting he often only saw it after he'd had to deal with the problem, whereas other carers were a rich source of advice.

 
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Explains that he felt that the people from the Alzheimer's Society were helpful because they...

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Age at interview: 78
Sex: Male
Age at diagnosis: 68
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No, I have, really, apart from the visits being a little bit less frequent than I would have liked I couldn't fault them. Of course when I got in touch with the Alzheimer's, I think what distinguished the people that I saw was the fact that they weren't quite so official or 'officious' perhaps is the word. 

There was more constancy about the people that came. And they seemed to have a better understanding of the position, possibly because they were specialising, I suppose the psychiatric nurses would be dealing with all sorts of mental illnesses apart from dementia. Dementia is a vague kind of thing really. 

So I did feel as though, two things about the Alzheimer's representatives, one, they were less professional in the sense that they were more friendly; and two, that they knew dementia and they were able to give you an answer for almost any problem that you, well any problem that I ever raised with them, they were able to give me answers. 

So you know putting them in, into the category of professional advice then I was very pleased with what they did for me you know, not least of which was taking us on a holiday you know together, that was very good.

 

Explains that he has picked up most practical information from other carers.

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Age at interview: 72
Sex: Male
Age at diagnosis: 62
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I got a lot of information from [name] at [name of agency], not just talking to her, information, written information and also I'd got a book on Alzheimer's, which I think I got from the Alzheimer's Society. I get newsletters and things from the Alzheimer's Society but to me they never, they're interesting but not helpful. I've always found that I've got to that stage by the time I've read it if you see what I mean! It's come along afterwards, not in advance of.

I think I got most of my information from talking to other people. You see I've been going to [the day centre] carers now for five years in July. I've talked to an awful lot of carers, there aren't many of us, there's probably six of us at a time but I suppose that's when I've picked up what I call practical information. Different people's reaction, different people's problems which has been far more helpful and also when my wife was here I never got much time to read. By the time I was ready to read of an evening I was nodding off at any rate.

Many of the people we talked with had joined a local carer's support group, though they had sometimes not found out about the groups for many months. The advice and support was often described as invaluable. Many carers said that they would advise others to join the Alzheimer's Society and find out about local support groups as soon as possible rather than wait until they reached a crisis point. Several could not understand why details about support group were not part of a standard package of information for all carers. People who were working sometimes found that they could not attend support group meetings because they tended to be held during the day.

 

Suggests that other carers should get in touch with their local support groups.

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Sex: Female
Age at diagnosis: 80
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Yes, in theory care in the home is fantastic, but in practice for us it left a lot to be desired and I think with probably lots of other old people, but certainly with Alzheimer's, they need that emotional support. Somebody being there, somebody to talk to, that sort of thing more than the practical help really, but you can't get that unless the practical help is needed first.

I mean I was very lucky, again I had my own private band of friends who went in, so yes, the most helpful people were friends who rallied round and helped enormously. And again, the Alzheimer's Association (Society); I'm not sure that my own particular local group was very good in practical help, although I did join and I did go along and they were very supportive they don't seem to have got it together in practical help. I think other areas have gone on a lot better in providing practical help, but they were there and at the end of a phone and that sort of thing was enormously helpful.

Get in touch with others too; other people who are experiencing the same things, even if you can't go and visit them, there are support groups. I know our local Alzheimer's - I said they didn't, of course they do - do a lot, but their support groups are in the day, I couldn't go because I work full time. But yes, get out to a support group because meeting other people who are going through the same thing is a terrific bonding thing and you can help each other even if you just phone each other sometimes.

 

Thinks the advice and support from good friends and the Alzheimer's Society have been invaluable.

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Sex: Female
Age at diagnosis: 80
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And something I didn't say, and I know this is all being funded by the Alzheimer's and I'm not saying it because of that, thank goodness for the Alzheimer's Society as well because as soon as I knew mum had got Alzheimer's I joined. And they've got their helpline, which I haven't actually used the help line but to know it's there. And they have, I think I've bought every leaflet they've got, absolutely every, and to see things in writing and things that you wonder about and things that you think might be so or might not be so, to actually see them in writing. 

And to know there's a body that, and once or twice I have phoned up and people have been so understanding and so, 'Well I don't know but I could find out so and so for you.' So I think that has also been invaluable. And I'd say to anybody join as soon as you get, you know any carer, join because you are not alone.  

They're at the end of the phone all the time, somebody who really understands and that's what you need. And I mean I was lucky I had friends that I always said supposing somebody had been worse off than me that didn't have a very good professional back-up, didn't have good friends, perhaps a, a spouse or somebody because their friend could have died you know. And I'd certainly, I'd certainly encourage anyone to get hold of the Alzheimer's Society, immediately for whatever comes later, just to make that contact because later on it's a bit more difficult to make contact. 

Because you are not in a fit state but if you've already made that contact then it's there as a back up. It's luck of the draw isn't it? I'm lucky to have good friends and unlucky to have professional bodies who aren't so good.

Practical advice from support groups included advice about benefits, how to choose residential care and advice about how to manage behaviour. Other carers had often been through similar experiences and were able to understand and offer their own perspectives. Some carers described meeting others for lunch and appreciating the social contact and opportunity to enjoy themselves. Some local groups run drop in centres where carers could leave the relative for a couple of hours so that they could deal with household issues, go shopping or attend their own medical appointments.

 
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Alzheimer's Society gave advice about how to inspect residential care homes.

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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If I can't talk to her GP, who can I talk to? Oh, I can talk to the Alzheimer's Society who have been brilliant, absolutely superb, but I've bent the ear of the lady on the phone more times than I would like to say, less so lately but certainly for the, that period of twelve months, I was on the phone every week probably and they told me that I could ask for an assessment for my mother. 

They told me that when I inspected a home I should look for various things like a visitors book, like whether there was any entertainment, like what sort of policy they have about getting people up and putting them to bed and letting them behave as they want to behave and going in and having visitors and all this sort of thing.

And they, although I actually knew about it, through my sister and my own work, they also pointed out to me that there is an inspection unit for nursing homes to which you can have resort. And if you want to know the latest assessment they will send it to you and that is invaluable to know that somebody goes in and provides a check on the nursing home. If you're not satisfied with a nursing home then go to the inspection unit, tell them your concerns and if they think its appropriate they will look into it.

 

Explains the value of the practical information and support from other carers in the Alzheimer's...

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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And to anybody now who receives a diagnosis I would say there should be some kind of automatic procedure whereby the GP or the consultant puts the patient and carer in touch with the nearest branch of the Alzheimer's Society and also informs the Alzheimer's Society that there is a newly diagnosed person in their patch. 

Because I knew I was in denial, I didn't want to say this was Alzheimer's and the Alzheimer's Society eventually, through a mutual friend, came to me. So I think if you want help it's there, it's knowing where it is and it's also the Alzheimer's Society coming to you. So that's really around the first three or four years of the illness I would say. Well, two to four years after diagnosis I think you need a lot of help in the middle phase of the illness.

I first of all bought a book called 'The Vanishing Mind' which gave me the sort of, well like the medical picture of what Alzheimer's is and it was three years after diagnosis that this mutual friend put us in touch with the Alzheimer's Society and that's the best thing that ever happened. I was given informative literature to read and I was drip-fed information, not all at once but for my needs. 

The information came, the outreach worker contacted me, she came, she was on the end of a phone if I needed her and she would come on a regular basis and see how we were doing. And she educated me on how to deal with difficult behaviour, on how to deal with habits like hiding and hoarding and explained things, you know, that they are losing so much of themselves that they feel the need to put things that are important to them in a safe place and that's why your handbag ends up in the washing machine! And when it's explained to you and you understand, then you can make allowances because your natural reaction is to think that the person is winding you up. 

Certainly, the Alzheimer's Society's literature, the advice sheets which were again fed to me, drip-fed to me, booklets as they were published were fed to me and my nearest branch was in the next county, so I couldn't go to any support groups. But she came to me, or to us, to help me with strategies for caring for [my husband].

I was so impressed with all this, that I joined a group in [town] and we worked to establish a branch in [town] because I felt I was so thankful for everything that was being done for me, I wanted other people in a similar position in this part of the world, to have a similar sort of support. So interestingly when I joined the support group I was perhaps a person further along the line and was able to help other people, rather than personally finding the support group helpful because other people were you know, not quite so far along the journey. 

But hearing talks, like the one [name] gave on activities, because that's a thing that bothers carers a lot - 'What can we give our relative to do' - and hearing that talk, every now and again you'd have a big flash of light and I thought 'Oh if only I'd known that.' So my greatest source of information - and still is - is the Alzheimer's Society, for everything, whether it's legal, financial or caring problems.

Some of those who said they had gained a lot from support groups commented that they did not see themselves as the sort of people who joined groups. One who had considered himself and his wife to be very self sufficient said that he regretted not joining his group earlier.

 

Did not at first want to ask for help, but finds that other carers can understand each others...

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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But I've become involved now with the Alzheimer's Society and I'm a committee member. I didn't ever want to be. I always felt I didn't want anybody's help and I didn't feel they could help me. But I found gradually that yes I do need the help and also meeting people who've got, are in the same situation as yourself helps. But you don't want to live with them all the time but just to talk to them occasionally. 

A few of us meet for lunch once a month and we have, we have moments when we talk to each other about our partners but the rest of the time it's general things, and it, we all understand the other's problems to a point, although they're all different of course, but we understand the difficulties people have. And we can, all these things help you, I feel better when I come away anyway, let's put it like that. It's not easy to help people because some people are like me, I didn't want help in the beginning. I just felt I didn't need help from anyone. 

I didn't think it would do me any good. I thought I was strong enough to cope with it but no one, believe me, is strong enough to go on and on and on year after year, day after day, minute after minute, you need help. And take all the help that's going.  

 

Has found the Alzheimer's Society a great support, although he and his wife are usually fairly...

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Sex: Male
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So we joined the Alzheimer's Society which has been an absolute lifeline for us. The quality of the local branch is very high, particularly the home liaison officer. We're very much involved in their week-by-week activities. We've made a number of good friends through the society, people in a similar position to ourselves or carers who have now lost their partners but are still involved in the society and give us support and advice. That's been an enormous source of strength.

Actually that's not a, it's something that didn't come naturally to us. We're fairly, I suppose we're fairly insular people. We've been, my daughter once said to me 'The problem is you're too satisfied with your company.' We've had an extremely happy marriage; we do everything together. We don't necessarily look for too much excitement outside the house so it's been quite a change for us. We go to every pub lunch and every bring-and-buy sale and car boot sale and coffee morning that we can but that's been very, very good indeed.

 

Regrets not having joined the Alzheimer's Society earlier.

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Sex: Male
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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.

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.

People who had religious beliefs explained how their beliefs were comforting and helped them to cope with their role as a carer. Religion could also mean being part of a community that could be called upon to offer support. A woman whose mother had always been a regular church goer explained that even if her mother did not understand the significance of taking communion, a visit from the vicar had a social function and would be welcome.

 

Explains how her religious belief is a comfort and helps her to decide what to do.

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Age at interview: 52
Sex: Female
Age at diagnosis: 57
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I think our Christian faith is enormously important to both of us. From [my husband's] point of view his faith gives him a hope beyond the disintegration of this life and its, it's a great comfort to him to, to feel that he's valued and, and as precious to God as if he had no disease, with all the limitations that, that come. So that's very, very important to [him]. Its very, very important to me in that I can pray that we will be shown things that will be helpful for us that will be occupations that will help our days along in the winter, this kind of thing.

I can actually ask God to help me provide what is best for [my husband]. And ask him to give me the strength that I need to cope with this whole thing. So it's important to both of us equally. And I think it is a great help for me to be able to remind [him], not only how precious he is to me, but how precious he is to God as well despite all the limitations that come with this disease. I think, I think that's all I can say.

And I asked God to show me what my motives were and why I was doing it and I asked him to help me in my demeanour when I spoke to the Patients' Representative. I asked to be protected from negative, malicious things that weren't going to serve any purpose, just to pursue a route of justice, no more, no less. And actually to pursue a route that, my main motive was to, its interesting I couldn't lodge that complaint until my main motive, was not to get at the individual, at the man, but to genuinely try and address a problem that could prevent others suffering the same fate that we suffered. And that was very much to do with my faith. 

I wanted God to approve of my motives before I did it. When we have a big flare up and my husband really loses control and I've learnt that to try and talk it through logically is hopeless, to try and go to him and explain what's gone wrong and why is, does nothing but inflame it. I would walk away and I would ask God to give me the grace to not fly back at him but to compose myself so that I can remember it's a disease and that I've got to go and try and help him through the disease. Because you see we can't ever really now have an argument like a normal married couple. 

We are not coming from the same level playing field. If my husband feels passionately about something and I feel equally passionately the other way, I'm in, as much as anybody is who hasn't got a brain disease, I'm in control and I can see the thing reasonably appropriately. If my husband's stuck in an obsessive frame of mind, its no good me reacting as I would have done ten years ago because I'm reacting not against an opinion or a person but a disease. And I've got to adjust my reaction, and I need help with that and I would pray to God to help me. It's as simple as that really. 

And I've asked in prayer in the past to know what the right thing is. Is it right to turn my back and let the dog run out into the road, or is it right to drop it and trust and just be led what is right? Yes, and when I, when we have difficulties as a family. Now that is a great help. If I have a particularly pressing worry, I will contact the children and I will ask them to pray about that worry that I will have clarity of the way forward. And I mean that is a great help because its not only support from them, its, its actual prayer support too. 

And if we've got something looming for instance, my son got married and there was enormous potential there for things to come horribly unstuck with my husband. And we all prayed that it wouldn't happen, and we had the happiest day I can possibly describe to you. That's how I would, how my faith would int

Last reviewed February 2020.

Last updated March 2015.

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