Assessments and care plans for carers of and people with dementia

In the UK, 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, which 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’ (regular deliveries of prepared food), 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 asked by the geriatrician.

Age at interview 80

Gender Male

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I suppose just the length of time it takes to get somebody to come and give their opinion and the endless forms you have to fill in. I think she was assessed by a psychiatrist/geriatrician when you first moved here. One county and another have different policies, so that the thing that was set up in [county] wast transferable here, so when they moved here the whole process had to start all over again. Just time consuming I think really. And the rather difficult situation when somebody comes to assess somebody who may be having a good ten minutes and the person coming in might thinkWell whas all this about, they look fine to m.

But actually, with skill and judgement they ask key questions that the patient eventually cat answer. We had a very interesting interview with the geriatrician when he first came here, and he said something likeI understand [name] you havet been very well recently. Yove had some problems with your memory. And she saidYes, it’s a family failin. And I thoughtGosh, wre not going to get anything done here, if she answers as swiftly and succinctly as tha.

But then he went on to ask her what went round her wrist to keep her watch in place, and she couldt 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 couldt say.

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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, for example 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 can be inneficient.

Age at interview 75

Gender Male

Age at diagnosis 67

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Well, when she was, in the hospital, which ve already mentioned for respite care, the hospital, the NH hospital, I, a social worker who was a, I, from the hospital contacted me. Now I thought she was an NHS worker. No-one, no-one had explained to me that she was a Social Services social worker with an office at the hospital to look after the patient interests in that hospital. And when my wife then went into the residential home I, contacted her with a query one day and she saidOh m not your wifs social worker anymore, she, the social worker is now, [so and so] and yoll contact her at the Social Services office But no one had explained, I was a bit baffled by all this. It all seemed very confusing. I didt realise, no one saidWell I only look after the interests of patients here I would have understood then straight away. Those are the kind of things that leave you a little bit confused in the beginning.

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 didt. I really didt understand the system. When I realised and started to pick up bits here and little bits of information there and realised that thers 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 thoughtWell this is ridiculous because, why aret we told this, why aret we given a booklet pointing out the transition from NHS to Social Service. A gradual one with bits and pieces here and there, what will happen first, what will happen second, what yoll have to pay for now which you didt before and why yoll have to pay for it and who yoll 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 saidWell it’s now the, it’s not the Social Services any more that deal with this, it’s the NHS he saidthe oh, this department anywayat the local hospitalOh right So I saidWell will you put a note on and ask, because my wifs got no communication, will you ask whoeves coming to see her to communicate with me so that I can meet him or her there and talk to them about my wifs needs because it’s me thas making the request anywayCertainly But of course nothing happened, there was no, that message didt get on for some reason.

Many things like that which, the services are there theoretically but there 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 cat cope with for one reason or another.

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Felt that help with company and activities for her ex husband would have been more useful than domestic assistance.

Age at interview 63

Gender Female

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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 sayingHe needs soap powder and I would leave messages back sayingThen 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 saidm pulling out, he needs full time care And the Social Worker saidThere ist a place at [name of residential home]

And actually one of, the issues that I meant to mention and I lost and m going to go back and say it that during all the time [name] wast 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. m the generation that ist overwhelmed by domestic things. I went to work, I didt particularly want to do them, I paid a cleaner.

But I can, I dot mind doing them and it didt 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 didt fit, he wouldt cooperate and there doest seem to be a way round that either, to cope with the awkward and the stroppy. And if yove been awkward and stroppy all your life yore entitled to be awkward and stroppy when yore dementing.

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The amount of support that is available depends not only on the assessment of the persons 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.

Age at interview 52

Gender Female

Age at diagnosis 57

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So they said ‘Well was I not happy?’ and I said ‘No, I wasn’t’, I wished to see the, the team member that had made the decision. Well I was then landed with a meeting of four professionals, the consultant who my husband was under, who I, neither I nor my husband had ever met; the psychologist who had decided that we couldn’t be helped any more; the CPN and the team manager. So two out of four I’d met before, and there were four of them and one of me. And it was appalling. The agenda was set, signed and sealed before any of us walked into the room and they just said that there were no, there wasn’t any more they could do, we were coping, there were other people who were more needy and that was the end of the story.

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 shed been given the, remit that we were complainers and shed 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 wed 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 weve 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.

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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 could not cope with her.

Age at interview 53

Gender Female

Age at diagnosis 61

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And then, this takes us up to the summer of 93. We had a care plan, I cant remember, I think wed worked out a care plan, it didnt work terribly well, we were going to up the level of the day centre so she was going to go twice a week and in the summer of 93 I spent a long time with her social worker working out a care plan so that we would get covered for every day, some kind of cover for every day.

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 ‘shes too difficult, shes far too restless, were not having her. I was beside myself because wed 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 Id phone him and hed 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 couldnt 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 Id got threatened to resign at Christmas and couldnt cope. Nobody could cope with her because they said she was just so stressed and so agitated at home.

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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.

Age at interview 62

Gender Female

Age at diagnosis 61

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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 hes 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 peoples 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, theres plenty of room for him to wander. So it’s transformed my life basically since March.

And that’s the situation were 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 hes in this day centre. And they’ve also allocated him a one to one situation because of his extra needs. So that’s where were 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 times 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.

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NICE guidelines [NG97] June 2018 Dementia: assessment, management and support for people living with dementia and their carers, recommends:

Care coordination

Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.

Named professionals should:

  • arrange an initial assessment of the persons needs, which should be face to face if possible
  • provide information about available services and how to access them
  • involve the persons family members or carers (as appropriate) in support and decision-making
  • give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005
  • ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate

They should develop a care and support plan, and:

  • agree and review it with the involvement of the person, their family members or carers (as appropriate) and relevant professionals
  • specify in the plan when and how often it will be reviewed
  • evaluate and record progress towards the objectives at each review
  • ensure it covers the management of any comorbidities
  • provide a copy of the plan to the person and their family members or carers (as appropriate).