Module 4: INDEX
Many of the principles introduced in other modules are similar when working with family members. Building trust and confidence in care is paramount. Family dynamics may complicate care delivery, but may also be an opportunity to improve support.
The difficulties older people face when engaging with social care is often entangled with relationships with family carers. For example, it may be that the older person expects their family to provide care, but that this is becoming too difficult as care needs increase. Where the spouse is providing this care, it is feasible that they may have their own care needs. This can be very challenging for the older person to accept. However, it can also prompt complex feelings for family carers too: they may feel guilt associated with feeling burdened, or at being unable to fulfil all care needs.
A common experience heard within the HOPES research was that the emotions involved in caring for a loved one meant that family carers’ attempts to control their circumstances led to counterproductive care efforts:
“The first initial visit was just to get to know them and to talk to them, and also to see how their relationship works and straightaway I could pick up she was extremely stressed. Every time we stood up it’s “what are you doing”, “sit back down again”, “where are you going”, bombarding him with loads of questions. He didn’t know why he was standing up to walk around the living room, and she was constantly watching him and her anxieties just seemed to pass over to him..just too many commands, too many questions, just bombarding him, and it made things ten times worse for him, because he just couldn’t understand what was going on.”
Just as seen in Module 2, trying to understand how and why this might come about can give clues as to how to help for the best. In this example, the support worker identified the nature of their relationship as being the root cause:
“I think that’s just the way that their relationship is. I think she has taken charge of everything. So their whole life I think she’s always taken charge of bringing up the children, running the house, looking after people, and obviously she’s got to…she’s even said to me “I’ve always said, ‘no, I don’t need any help, I don’t need any help’”, but she’s getting to a point where physically she can’t do it any more. And I think sometimes it’s really hard to just let go of the reins and let a stranger basically take over. Must be so difficult. So, I think it’s more work with the spouse, like in this case, than actually with the person [needing care].”
In many circumstances, support workers would offer advice and education to help family members to identify where their help could be done differently. In the above example, the support worker showed how staging care slowly, with prompts, might mean that her husband could get dressed independently and with minimum stress.
In another situation, a support worker helped a family member to find different ways of helping their loved one to drink sufficient fluids.
“There have been incidents where I’ve been to people’s houses and their partner’s in bed, and they haven’t drank for three days. And she says, “well I’ve asked him if he wants a drink”. But yeah, they have asked, but he’s said “no”. Whereas, I’ve gone in, and I’ve stayed for an hour, and I’ve made sure they’ve drunk a full cup of water or a full cup of tea. It’s a different way of dealing with that situation. It’s not just asking, you’ve actually physically got to put the cup to their lips sometimes”.
Support workers would be very careful with their communication, because they would not want family members to think that they had failed, or that they were not up to the task. Recalling Module 3, that self-efficacy and building confidence in care, support workers would be fulsome in their praise and reinforcement of their efforts. All the support workers the HOPES research spoke to recognised the strains of care for loved ones. This recognition was a common way to try and encourage family carers to accept help.
“Why can’t you give it a trial? As a carer, you need to look after your health because that’s very important as well, you need your break as well. You do a fantastic job, so don’t worry about it. You don’t feel guilty about it, there is guilt as well sometimes, they feel guilty, why can’t I look after my loved one? So, you have to break that barrier as well, it’s nothing about guilt, because it’s your right, your own health is very important as well. So you have to be very, very patient.”
Support workers found that some of their activities involved ‘outreach’ work, especially with families from minority ethnic groups . It is commonplace for older people from some communities to face difficulties in accessing health and care support, and support work can help to facilitate access. Support workers can also help informal carers to access culture-specific support groups for peer support.
A crucial element of support work appeared to be in facilitating access to other community services. This builds on the notion that a service user’s journey should be one of ongoing support, rather than one punctuated by cliff-edges. During the HOPES research, we learned that support workers would contact a wide range of organisations and groups to provide the necessary networks for ongoing care. Many support workers had links with voluntary groups, and would know other key service managers by their first name. They would also problem-solve to identify key individuals who may be able to help. Examples include contacting the local church, or the housing association, or others that may be able to provide occasional input that might make a difference.
However, the research found that the support work role was much more than just ringing around, and the nature of these networks and how they were used were nuanced.
Introducing other services and support
The way in which other services are introduced appears to be important. There are many ways in which this might be done. Mostly, new support would be introduced in a very gradual way, with initial ‘low-key’ contacts. For example, a day centre was introduced by one support worker as follows:
“So, it was more about introducing him in a roundabout way, oh, we’ll stay for a coffee, and then next time we’ll go for a coffee and have a game of bingo, and to lunch. And at the initial stages I would stay with him. I’d have a cup of tea with him, and I’d play bingo with him. You know? So he’s not sort of being left to his own devices. And then gradually, I would disappear in the next room, or go and talk to somebody and leave him talking to whoever else was at the table”
The following example suggested that support workers in this area built significant bridges with community support after cognitive stimulation therapy came to an end, enabling entire cohorts of service users to be referred as a whole:
“So after the CST sessions finish, we facilitate a group meeting, a group introduction to a day centre. So myself and my fellow support worker will be at the chosen day centre and we’ll have our own table there and the seven people that have finished their CST sessions are invited to come and join us. So we introduce them as a group to a day centre. We do it with individuals as well, but we do it that way sometimes. Well, we do that every time after the CST groups finish because the people often want to maintain friendships with the people and the social contact, so we facilitate that. And then we also introduce people to the Alzheimer’s society meetings, cafes, singing groups, whatever is going on at the time. We introduce to them and that’s where this chap was sort of discharged back to the GP. He was going to day centres; he was going to the Alzheimer’s society and he was engaging with everything”
Introducing other services was quite a challenging prospect for many support workers. There were examples of where it could (and did) go wrong. In one instance, the visit to a new day centre was described as “just a cup of coffee”, but on visiting the older person became very distressed. The day centre was attended by many people with quite advanced care needs, and this provoked a very strong and negative reaction from the service user.
“So we went and it absolutely frightened him to death. There was people there who were more impaired than he was, there was people there who had other mental health conditions, not necessarily dementia. And I felt quite deflated because I felt that if he was going to be with other gentlemen, then he probably would be able to get some sort of camaraderie and, you know. But it just completely backfired on me, it really did and I never saw it coming at all. He was extremely upset, he got very angry. …
And I felt that I’d put him in a position where I should never have done that, but I did it in the best of intentions that I thought right, you’re a gentleman, you live alone, you could do with some social inclusion, this is a specific group for gentlemen.. And I just thought that would be so ideal but how wrong I was…
He was very vocal about, you know, “did I think he was like those others”, “did I think he was a mad person”, “what do you think of me if you think I would be interested in something like that”
And I never got that back. I did visit for some considerable time after but he got less and less tolerant of my visits.
Getting to know key people
Having good working relationships with local service managers allows support workers to tailor the experience for the service user, making access that much easier. For example, one support worker was considering a day centre for a lady she was supporting, but was careful to ensure that it had a small, non-threatening and ‘homely’ feel to it. Her knowledge of local services meant that one particular day centre would be suitable. She also knew the person who ran it, and was able to arrange a “trial run”, where the older person would join just for a short visit. It appeared that the service manager felt comfortable making a special arrangement, since she trusted the support worker and had previous experience of this working well. We found many examples of support workers building these networks, across formal services but also third sector and community/voluntary groups
Tip: When recommending attendance to a group specifically developed for those with mental health needs, liasing with the group beforehand can help ensure that you are encouraging the service user to join a group that they will find helpful.
Where the service user is shocked or frightened by the severity of illness in those attending this was found to breakdown service user and carer trust very quickly.
Support workers are recognised as providing a time-limited involvement, in most cases. In the HOPES research, there were many examples of support workers introducing homecare agency services, as a way of ensuring ongoing care. In all instances, the introduction was achieved by staging the involvement of new services. Where this was successful, support workers gradually reduced their own involvement over time. For example:
“The first few times I went about an hour before so that I was already ensconced in a chair in [the service user’s] lounge having a cup of tea before the knock on the door. And then I started to turn up just as the carer had got in and things…you know, just sort of like weaning her off a little bit. And then once the carers…which again, I say it but it took weeks and weeks and weeks, you know, once the carers were there and were able to do the basic things like…and she would accept a hot meal or a microwaved meal and a cup of tea, that’s all we wanted. Instead of then going once a week, I went every other week and then I went every three weeks, and sort of weaned myself away”
Exchanging information with new care workers appeared to be important, so that knowledge could be shared. The HOPES research suggests that this was wide-ranging, from biographical information, nuanced knowledge of what care work might entail with the service user, and messages of moral support for when things may get heated:
“I printed out like a list of step by step, things to do with the carers. And I’d give a life history, I’d give them about her personality and what to expect. She can be a bit fiery, she might say things, don’t take it to heart, let it go over your head. Don’t be scared by it either, because sometimes when people are firing things at you, you think I need to get out this situation, I’m making it worse. But actually, she’s just venting off a little bit. Just agree with her and don’t take it to heart. She also sometimes used to accuse people of things, so the care companies beforehand used to send carers in twos and that really didn’t work at all, because the moment the two carers started to talk to one another she’d be “what the hell are you doing, my house, you’re here to see me, not to talk to one another”. So again, it was that respect thing, “you’re here to see me, your attention should be on me”.
It may also be helpful for support workers to make suggestions about how best to match the characteristics of carers to the older person’s preferences e.g. the care worker who may be most likely to be able to provide continuity of care or sending an older carer if the individual prefers.
Not all service users can remain in their own home, and ultimately transfers of residence to a care home is common amongst older people with dementia and mental health needs. In the HOPES research, this was not often seen as “defeat”. Often support worker intervention delayed entry to a care home, or provided a better quality of life for the time they remained at home. Also, it appeared that support workers were important in easing the transition from home to residential care, such as in this example:
“So we managed to get her to agree to care and then she decided she wanted to go for a little trip down to see her brother. So her niece took her down. She went to look at a care home down there and then she came back and talked about it. So we, sort of, talked about it, how she liked being down there because she had more people down there to see. But she eventually decided to go into care. But it was just the thought of packing up, so her niece came and spent a week with her, helping her pack up. So we did a lot of work with her, for her to then go into care unfortunately. But she would never have accepted doing that prior to having me going in as well. Because she wasn’t keen on the idea of services going in.”
