Carers of people with dementia
Assessments and care plans
The GP, Social Care and the Community Mental Health Team or Memory Clinic work together to ensure the person with dementia and their carer’s needs are met. This should involve assessments of the person with dementia. This may take place in their home, perhaps by occupational therapists, nurses and/or social workers; they should also offer a separate “carer’s assessment” to see if the carer can be supported in their own right. Services offered may include aids and adaptations in the home, respite care, home care, meals on wheels, day care, residential care and nursing home care. Social services have a duty to arrange to meet the needs that they identify, whether the person is living in their own home, with a relative, or in residential care. A care plan is written to describe the needs and the way that they are to be met. It should be reviewed regularly, especially when the situation changes. (See Alzheimer’s Society factsheets 'Assessment for care and support in England’, ‘Assessment for care and support in Wales’, and ‘NI factsheet: Community care assessment' for more details of what is available and how to apply).
The first step in arranging a care plan is to have an assessment carried out. The person's GP should be involved and will often start this process, and the local social services department will be able to supply details to the family carer about how to apply for an assessment. A carer can also request an assessment directly for the person with dementia with their consent, and can also request an assessment for themselves for their caring needs. Having the assessments done can be a rather worrying time for the carer as well as for the patient. However an elderly man commented that he was impressed with the careful and skilled questioning by a geriatrician.
She was surprised how long everything took to arrange, but impressed at the way questions were...
But actually, with skill and judgement they ask key questions that the patient eventually can't answer. We had a very interesting interview with the geriatrician when he first came here, and he said something like 'I understand [name] you haven't been very well recently. You've had some problems with your memory. And she said 'Yes, it's a family failing'. And I thought 'Gosh, we're not going to get anything done here, if she answers as swiftly and succinctly as that'.
But then he went on to ask her what went round her wrist to keep her watch in place, and she couldn't think that it was a strap of any kind, and, could talk easily about the war, and who were allies and so on. That was not a problem at all, but current things, days of the week, months of the year. Even the year I think at that stage couldn't say.
Carers we talked with were often confused about the professional responsibilities of the various health, social service and voluntary sector people who were involved with their relative. People were particularly confused about the responsibilities of hospital social workers (who are not employed by social services), occupational therapists (who sort out adaptations to the home) and about the boundaries between health and social services.
A daughter could not understand why her mother was unable to leave hospital with a supply of continence pads and was expected to wait 6 weeks for a visit from the continence advisor. Many complained that the professionals seemed to assume that they knew how everything worked, yet it was common to feel completely at sea. Several said they could not believe how slow the system was. Sometimes by the time a solution was found the situation would have changed to the extent that it was no longer applicable (e.g. an adaptation at home would be offered after the person had gone into residential care). A woman who had separated from her husband explained that she was content to help with his domestic tasks but felt that he needed some company from other people.
Says that the different responsibilities of professionals are poorly explained and that services...
The new social worker contacted me and yes she, was very good but even then it was all assumed that I understood the system. And I didn't. I really didn't understand the system. When I realised and started to pick up bits here and little bits of information there and realised that there's was this dividing line between Social Services and the NHS and yet the Social Services had a worker in the hospital. When I started to understand the system then I thought 'Well this is ridiculous because, why aren't we told this, why aren't we given a booklet pointing out the transition from NHS to Social Services'. A gradual one with bits and pieces here and there, what will happen first, what will happen second, what you'll have to pay for now which you didn't before and why you'll have to pay for it and who you'll have to pay. And, none of this was explained properly at all.
There are so many services available, finding out who provides them is so tricky it's not true. Recently I asked for some kind of an aid, a walking aid, a support for my wife and I asked them, I asked the GP if he could arrange for anything. And he said 'Well it's now the, it's not the Social Services any more that deal with this, it's the NHS,' he said 'the,' oh, this department anyway 'at the local hospital.' 'Oh right.' So I said 'Well will you put a note on and ask, because my wife's got no communication, will you ask whoever's coming to see her to communicate with me so that I can meet him or her there and talk to them about my wife's needs because it's me that's making the request anyway.' 'Certainly.' But of course nothing happened, there was no, that message didn't get on for some reason.
Many things like that which, the services are there theoretically but they're not always available when you want them. And we know money comes into it and time and everything costs money but having said all that, sometimes I feel it would be better if less services were provided but provided, those that are provided, provided more positively and quickly. Perhaps sometimes the authorities try to encompass too much which they can't cope with for one reason or another.
Felt that help with company and activities for her ex husband would have been more useful than...
And I realised that progressively they were expecting me to do more and more. There was money for them to buy anything he needed by this point and they would leave me messages saying 'He needs soap powder,' and I would leave messages back saying 'Then get him some.' So for three weeks no washing was done. So we had reached the end of the line. And I got flu. And it was snowing. And I phoned the Social Worker and said 'I'm pulling out, he needs full time care.' And the Social Worker said 'There isn't a place at [name of residential home].'
And actually one of, the issues that I meant to mention and I lost and I'm going to go back and say it that during all the time [name] wasn't here the help that I wanted was company and for things for him to do. And all they would offer me was washing and ironing and cooking and cleaning. And I could do that. I'm the generation that isn't overwhelmed by domestic things. I went to work, I didn't particularly want to do them, I paid a cleaner.
But I can, I don't mind doing them and it didn't matter, but I wanted him to have company, I wanted him to have stimulus and that could never be provided in any way. And he didn't fit, he wouldn't cooperate and there doesn't seem to be a way round that either, to cope with the awkward and the stroppy. And if you've been awkward and stroppy all your life you're entitled to be awkward and stroppy when you're dementing.
The amount of support that is available depends not only on the assessment of the person's needs, but also on what is available locally through social services, health and the voluntary sector. Some carers compared notes with people in other parts of the country and concluded that the provision in their authority was less generous. One woman described her experience of challenging the assessment and getting a care plan she believed was more appropriate to her husband's needs.
Describes making a complaint about her husbands care plan. Describes digging her heels in when she felt her husband wasn't getting the care he needed.
Well, I went back to my, our poor long-suffering GP who was so appalled that he said he would write his own letter of complaint to the Chief Executive because he then felt totally unsupported. He is not an expert in an unusual dementing illness and basically we were thrown to the wind with the buck stopping at him. I again, sat down and wrote my own letter to the Chief Executive. This is all at a time when one is totally devastated because one feels abandoned. Either you sit back and accept the abandonment or you have to gather everything and start fighting, yet again.
So I wrote to the Chief Executive, our GP wrote to the Chief Executive, and the result of all that was, after a long and tortuous time of meetings with various people, funnily enough I think the thing that did it was my husband writing quite an offensive letter to one consultant that used to be a colleague of his, again offensive as in consistent with his disease. All I can tell you is that after that letter, things started to happen!
A new CPN was assigned to our case. I think she'd been given the, remit that we were complainers and she'd got to come and sort us out and smooth troubled waters and jolly well pull out all the stops and make sure things worked, otherwise we'd be complaining again and so on. The upshot of it was, now I, my, complaint was based on the withdrawal of two, one hour sessions a year. That's one hour every six months with a CPN. We had an hour, three times over a period of eighteen months, both my husband and I with the psychologist. So those had been withdrawn. Because they were withdrawn my husband refused ever to speak to anybody within the unit again.
So they'd not only lost the carer, they'd lost the sufferer as well. As a result of that and as a result of us making a formal complaint I now have a CPN who meets with me well, so far we've probably had twice as many meetings as I ever had before. My husband has a placement in a, actually a psychiatric unit because of his age and the Alzheimer's unit would be wholly inappropriate. He has transport that collects him from home and takes him in on a Friday morning. He has a session in a carpentry unit under supervision, he has lunch there and he has transport back again. Now if the problem was finances, resources, I would suggest that it wasn't terribly well managed in respect of what they've ended up having to fork out if that really is the problem.
Sometimes the carer spent many hours working out a tight package of care, only to find that one part of the jigsaw fell apart almost immediately. A woman who had been counting on a day centre for her mother found that her plans were scuppered when the centre said they could not cope with her. Even when a care package works well it can still leave a lot of responsibility on the carer.
Her mothers care plan did not work when the day centre, and eventually the home carers, said they...
They got an agency to help; she got the maximum amount of help from Social Services and day care. That included going to two sessions a week to the day care centre. We spent hours on this thing, this plan and getting the carer mum knew, getting an agency with three separate carers so that each meal time was covered, the day centre, so it was quite a tight package you know.
I spent most of August sorting it out and the second time she went to the day care centre after we left, they discharged her, said 'She's too difficult, she's far too restless, we're not having her.' I was beside myself because we'd spent all summer working out this care plan that included the day centre.
I actually wrote complaining letters to everybody I was so angry. The Social Worker really was very helpful and he tried to see how we could rearrange it so that we could get more agency help. I asked the Nurse to visit more often to kind of cover that and we sorted out the care package.
And he, I would liase with him and I'd phone him and he'd check on the care package and see how it was working, so that went on to about January '94 when it was quite obvious we couldn't keep mum at home any longer and we had a conference when I was up there and the agency that was providing the other care and the Nurse at the, the carer that I'd got threatened to resign at Christmas and couldn't cope. Nobody could cope with her because they said she was just so stressed and so agitated at home.
When a carer feels supported by a care plan this can have a positive effect on their relationship with their partner or relative. A wife describes how the NHS funds her husband's care plan and how her life and relationship with her husband has been transformed. (See 'Home carers').
Describes how a good care plan has transformed her life and her relationship with her partner.
And they had, they had it actually they had decided the social worker that the best thing they could do was to go for a continuing care plan so they filled in the forms, not there and then obviously. But the psychiatrist had to fill, do you know about the continuing care plan?
It's run by the local health authority and it's funded by the NHS and it is to try to help to keep people, to provide people with their needs basically. To have an assessment done, but it's done through the NHS rather than through the Social Services. So they have the psychiatrist has to fill in a form, the CPN has to fill in a form, the social worker has to do one and I have to sign it, or sign something anyway. Then it goes to a panel which meets once a fortnight in [county] which is where we are based and they say yea or nay.
So they said yes and within a fortnight of these forms being filled in he was in this place he's in now so they, they granted five days a week day care, seven hours a day and thirteen weeks respite care during the year all funded through the NHS, we don't have to pay anything at all. And this will go on, on and on and on because once they've granted it they can't take it away.
And they are fantastic, it has transformed my life. And the home itself is a privately run EMI nursing home. The woman, the people who own it are a doctor and his wife. The woman who runs it is a qualified nurse and qualified CPN who went back to do a nursing degree because they wanted her to and when she came out she said I couldn't go back to being a CPN because I couldn't stand going to people's houses, telling them what they needed and then not being able to provide for their needs, and she is brilliant.
She doesn't just allow me seven hours, she allows me as many hours as I need. So when I'm working I can take him in at eight o'clock in the morning, pick him up about quarter to six at night. And it's a big Grade 3 Listed building, there's plenty of room for him to wander. So it's transformed my life basically since March.
And that's the situation we're in now. Five days a week I take him and fetch him and then I have him in all you know in the evening and at night and at weekends. Apart from that he's in this day centre. And they've also allocated him a one to one situation because of his extra needs. So that's where we're at the moment.
Sometimes I feel very angry with him. Not so much now. I've come to terms with the situation a lot more as time's gone on and as I've got this continuing care plan which, I know the NHS has got lots of problems but I have, I think I've been very lucky. I really do, I have nothing but praise for the people with whom I've dealt and am dealing now and the fact that it's being funded through the NHS and it's not costing us anything is wonderful.
And it's given me an opportunity to get some of my life back and this is what the woman who runs it says to me. She says don't look on this just as an opportunity to work, look on it as an opportunity to get your life back and it has, it's made a tremendous difference. So my relationship towards [my partner] has changed in as much as I feel very protective towards him now and I can laugh at some of the things he does.
When he goes wandering off in town I think well, it doesn't matter because I've got five days a week when I can come into town when I'm not working. So when I'm with him I tend to give all my attention to the things that I can do with him.
In February 2009 the Department of Health launched ‘Living Well with Dementia' A National Dementia Strategy’ that was implemented in England over a five-year period to 2014. It set out 17 objectives for transforming dementia services, with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at all stages of the illness and in all settings.The following objectives are quoted from that strategy'
• Objective 3: Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care.
• Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.
• Objective 5: Development of structured peer support and learning networks. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services.
• Objective 6: Improved community personal support services. Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, and people who pay for their care privately, through personal budgets or through local authority-arranged services.
• Objective 7: Implementing the Carers’ Strategy. Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers’ Strategy are available for carers of people with dementia. Carers have a right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good-quality, personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected.
Since the National Dementia Strategy 'Living well with dementia' was launched in 2009 by the Department of Health there have been many improvements in the care and support of people with dementia and their carers across the country however services differ across the country. In 2016 the Department of Health published the ‘Dementia Atlas’, an interactive map of England, which shows standards of care by area.
Last reviewed July 2018.
Last updated July 2018.