Module 3: INDEX
Why do people decide to follow particular actions or activities, towards a goal? One way of understanding motivations for care is using a simple theory shown below.
Our findings suggest that some of the difficulties involved in providing care in the best way is because of beliefs around whether the care is needed, and whether care will help. Sometimes, older people with dementia or mental health needs might be labelled as ‘lacking insight’ if they cannot see their need for help. There may be some truth in this, but we found that support workers would be careful not to make too many assumptions about what a service user could, or could not, come to notice or believe. This research found that reframing care can often have a positive influence on the motivation and efficacy of the service user when working to achieve positive outcomes
Support workers we spoke to talked about different approaches to their care that helped to remedy these difficulties.
Those we spoke to cautioned us against any approach that might be too directive. Support workers would rarely tell service users what to do, or what was going wrong. Instead, support workers preferred to guide people to reflect on where they think things could be different. As one support worker we spoke to said:
“I think most people, even in their darkest moments, can see that things aren’t right but they don’t always have the wherewithal to know how to put it right, or the motivation, or the willingness, or the understanding, they don’t have that.
You know what you want them to do, but you have to go about it the long way round, to get them to come to the decision that they want that to happen. Because what would be the purpose of going in and saying .. look at your cups, you’re drinking out of mucky cups”.
Another practice that helped service users to reflect on what might change included “planting the seed” of ideas that you might want to come back to.
“What I tend to do is I’ve got all the information, but I only give them a little bit at a time. So I might say to someone, “oh, I know someone who does Walking Tennis, and I basically leave it then for the person to want more. They might come back straightaway, “oh, that’s interesting, where is it?” And of course, I will answer that question, but if they ask the next visit or the visit after that then you’re building up on that…
So what I try and do is almost make them think that it’s their idea rather than me telling them what to do. So giving enough to tease them and say what do you think about this, but always let it be that it’s them that’s making the decision or in a way they think they’re making the decision because obviously my job is to try, not force people, but to try to get them to engage.”
These support workers may be drawing on some of the ideas presented in motivational interviewing techniques. Motivational interviewing is a guiding style which supports the engagement of service users, helping them clarify their strengths and aspirations, evoking their own motivations to change and promoting decision making. Motivational Interviewing is beyond the remit of the HOPES work. However, Rollnick (2008) identified four general principles to motivational interviewing for practice:
Resisting the urge to try and change the older adult’s course of action through dictating what they should do.
Understanding the older adult’s reason for change (not the practitioner’s) as this will result in behaviour change.
Listening. This is important is the solution lies within the older adult (not the practitioner).
Empowering the older adult to change their behaviour.
One challenge for some service users is believing that engaging in activities will yield success. This may be because of fear of failure, or not perceiving the benefits. Support workers routinely staged their activities in small activities, maximising the chances that those with care needs will succeed in completing them. By building ‘virtuous circles’, confidence and self-belief had room to grow.
Each staged activity could be small, but it would be significant:
But I said why don’t we set ourselves a little target, and we wrote this little chart out on just a flimsy piece of paper. Because I used to see her every week, so I’d put… you know, with [female name] and then I’d put today we are going to tidy the cushions or something like that, or we’re going to hoover the floor, you know. And again, I had the time to be able to do that, … I’ve just spent an hour with this lady, I’ve driven away, all we’ve done is checked and fluffed cushions but she did it, you know, she wanted to do it, she wanted to be engaged in it.
As highlighted above, the support worker was careful not to direct the service user, but to work together. In helping self-reflection, success was reinforced by keeping a visual reminder of the “target” being met.
Many tasks were broken down in this way, into “bite-size” activities. If a full shower, bath or strip wash is rigorously rejected, support workers showed that there might still be a way to start small.
Personal care like showering and bathing can be particularly difficult for people with dementia or severe mental health difficulties. As well as staging the task carefully, support workers we spoke to found ways to introduce it quite differently, and try to make it as pleasant as possible.
“She would refuse help with a wash if you asked her, but what we did was we found that we managed to wash her feet and her legs by just saying, I’m just popping to the car, [female name], and then you’d come…you’d kind of go in the kitchen, you’d have a bowl ready and fill it with water and white bubble bath and you’d go in and she’d kind of look at you and say, “what do you want me to do now”. You’d say, “would you like to just take your socks off and your shoes off and pop your feet in here, it’s really nice and warm and lovely”, and she would do, she would do it that way.”
The example just shown highlighted the importance of ‘positive feeling’ in support work. The HOPES research noticed that support workers built a relationship so that the older person felt they were ‘on their side’. Establishing yourself as helpful and trustworthy person was found to be extremely beneficial when delivering care.
One support worker noticed that a family carer was struggling to wash and dress her husband, but she was very reluctant to have care workers do it. Possibly, she felt threatened by having formal carers take over, and that it might be a sign of failure. The support worker recognised this, and tried to re-frame her role as being a little bit of help, not as replacing what she was doing
I said: “I’m not here to take over, you’ve been doing fantastic all this time, it’s just a bit of support, that’s all, that will help you look after him for…you’re doing it 24 hours a day, seven days a week”. So it’s also letting her know that I completely understand what it’s like and “I’m here to help: let me help you”.
Being ‘on their side’ meant validating their experiences, and demonstrating active listening.
So, I would sit down for ten minutes, have a good chat with her, let her have a good rant. She’d rant about [name of a care worker] coming in. She had big issues with [name] coming in, and I’d let her talk to me about it. I would just validate those feelings, because I would say to her, “it must be awful”, listened to what she was saying, “yeah, I would feel really crap about that as well”, and just validate what she was saying. So, she felt like she was being listened to and heard.
Some caution would be needed when doing this. This support worker was careful to validate the service user’s feelings, but without getting into a dialogue about what the care worker might have done wrong.
Activities: When things go wrong
The HOPES research also heard from some homecare workers who were having difficulties engaging with older people with mental health needs. There were some clues as to how they might have approached things differently.
How might this homecare worker come at things differently?
“Oh gosh, I’ve just thought of one really resistant person. Oh, this one lady, she definitely doesn’t like me. I have never done anything wrong, but maybe I think it’s because I’m one of these people that – when I know somebody needs the care – I will say: “you really need to do this”, or, “you really need to do that”. And, she does not like that at all.
She has cellulitis on her legs and sometimes needs cream. She’s gone through four different brands of the creams that the doctor’s prescribed because she says that it’s really itchy. I’m not joking, she will literally be shaking, saying “it’s so itchy, it’s so itchy”, and it’s literally just E45 cream!
I’m not saying that she doesn’t feel those things, but she’s one of those people that once she gets something stuck in her mind, she doesn’t want to do anything. Like, if you offer her something for tea and she doesn’t like it, she doesn’t want anything else, she will throw the plate down, she will say, “get it away from me”. She’s very stubborn.
How was this older person labelled?
Was this care worker “on their side”?
How might this care worker have approached this differently?
The support workers in the HOPES research found that effective practice was not all about ‘doing tasks’. Wherever possible, support workers would link their practice with spending ‘good time’ with people.
This was not just about having fun – though there is nothing wrong with that – it was about building a reservoir of ‘positive feeling’ about the relationship that could be drawn upon at other times. Having happy memories that can be referred back to during the delivery of difficult care tasks was found to be very beneficial in terms of lightening the mood, whilst sharing memories together which could (in the future) be referred back to as something familiar and that you have in common.
Spending good time with people meant doing things together that the service user and yourself enjoy. This could be going out for coffee, going to the cinema, or going shopping.
“And we’d do nice things as well, not only just thinking about shopping and showering. There was a time we went to the pictures, and it took me a while to get her there, but she always remembered it, because it was quite a strong emotional memory. And I would say, oh come on, do you remember when we went to the pictures and she’d laugh about it and she would recall things from that visit. She used to have some really strong emotional memory come back and I would always bounce back to that if she was starting to get upset with me or a bit distressed.”
Humour
There were lots of examples of support workers using humour to build positive feeling. Some older people might forget some of the activities and tasks that come along with a support worker visit, but they often remembered if they laughed.
“We have a lady who phones us, it’s usually every Wednesday, and she’ll go, ‘I’m feeling like x, y and z’. And then before you know it she’s laughing, joking. And she said, ‘oh I’m glad it’s you that answered the phone, you do cheer me up, you make me laugh’. I probably talk broken biscuits”
As well as positive feeling, and strengthening the relationship, humour was used in very specific activities that could help lighten the mood, especially around personal care.
And then I’d make her laugh, I’d say: “come on then, let’s get them out”. Again, it would be going from how she responds to things: she’d be a bit cheeky and she was a bit of a “character”, so she wouldn’t mind me shaking my boobs in front of her and she’d do the same. Again, making it light-hearted, because again it’s not nice, is it, getting undressed in front of a stranger
Depending on the personality of the older person, and the nature of the relationship, support workers would describe ‘banter’ as being helpful. This type of humour would make fun of a situation, or involve gentle teasing of each other. Banter can help defuse what might otherwise appear to be a stressful situation. Similarly, ‘dark humour’, making light of a serious predicament, can help to keep things in perspective. A manager of support workers that the HOPES research spoke to said:
“I’ve seen a lot of our support workers walk in somewhere, where it’s been heading towards a Mental Health Act assessment, and they’ve diffused the situation with either some dark humour or some comment that might not be “textbook”. They might be saying something that’s possibly inappropriate in a textbook, but it’s not, and it’s what’s needed to diffuse the situation. So there’s a lot of things that you won’t get from a textbook that the support workers do naturally.”
Obviously, using humour, and especially banter and dark humour, demands that the support worker knows the boundaries and limits of what is acceptable to the older person.
Sometimes an older person’s care journey involves some negative experiences that are unavoidable. A common example might be hospitalisation due to their mental health or dementia, and sometimes this may not be a voluntary process. Where possible, support workers would avoid becoming associated with these.
“I do go onto the ward because my patients do get admitted from time to time if the need arises, but I try not to be too much of a part of their ward experience because I need to follow them back into their community living. And it’s always a bit problematic, I feel in my experience, if you become too involved in what’s happening with them as an inpatient, then you can dissolve some of that relationship that you had previously.”
Our research also found that where there was a negative experience with one of the carers in the organisation, then this could lead to a breakdown in trust entirely between the service user and those visiting from the organisation (or group of organisations). So particular care needs to be taken to ensure that, where possible, you are not associated with events that may erode the older person’s trust.
As seen earlier, older people are motivated towards care activities where they perceive it will help improve their situation. People’s confidence in care is linked to their being in control of what happens. As a general rule, people feel empowered when they are directing their own support. They feel enabled.
It is usual practice that carers would not presume to undertake care tasks that older people can achieve themselves. This can undermine confidence. Perhaps more importantly, carers would also use the minimum support necessary to enable care to be completed. For people living with dementia, and many mental health problems, the only support needed may be prompting, simple supervision, or help with motivation.
One support worker was helping a husband and wife with social care, and found that the husband was more capable of self-care than his wife had been enabling:
“We both made the bed; we cleaned the bathroom together and he was downstairs having his breakfast. So, in that short amount of time he did everything himself. Literally he only needed prompting a few times. He had to say, “oh, what am I doing now”, because his sequencing with getting dressed is all out of sorts. He doesn’t know what to put on first. So, I went “there’s your underpants”. Did it himself. All I had to do was wash his back. And because it was just his lead, he was in control of everything, everything runs so much more smoothly than all her anxieties going on to him and rushing him. Even she couldn’t believe that he was downstairs ready for his breakfast at that time.”
Another support worker discussed her work with a lady for whom cleanliness and hygiene within the home was a challenge. Targeting food preparation areas, the process of support work began by recognising that there was little point just cleaning for her. The support worker could only guide and prompt towards the work that was needed:
There’s no way she was going to let anybody near her kitchen and transform it from what she considered to be perfectly okay, to what I would consider to be okay, because they were miles apart. But I would lead the conversation around, you know, “shall we have a cup of tea?”. “Let’s see if we can find a cup. Oh, there’s a cup. Oh, these look a bit grubby, don’t they”? So she let me clean her cups. And once she saw she’d got clean cups it was like, “oh, well, I’d quite like a nice plate to eat my sandwich”. “Well, let’s do your plates then”.
Took me months, you know, to get to the point where I was looking at her through the frosted glass to the point where she was asking me to bring her in some Flash. Because I never ever wanted her to feel that she was having to do something, that I was making her do something, it was always about her making the decision to realise that things needed to change.
Although this is quite a well-recognised principle of support work, the HOPES research heard that it was easily forgotten: “I think there’s a very fine line between enabling and disabling, and in care I think you can cross that line quite easily without realising it”.
A final lesson in building confidence in care came from support workers who would try to find overlap between their own aims, and the person’s own agenda. Put simply, trying to find motivation for care is easier where the impetus comes from the older person themselves.
Our research found that common ground can usually found between agendas through finding out the following:
- What hobbies the older person would like to continue
- What the older person would like to achieve
This is demonstrated below:
“So I just said, you know, how are you feeling, I can see…I said, your garden’s looking great, you’ve got a beautiful garden back out there. And that’s it, ice-breaker…So he said, yeah, I can’t go to the garden and it frustrates me…I didn’t do assessment, we just talked about it. And he said the wife is like a shadow all day long… So I went the next week and …said, well, you know, how about if I actually get you a little perching stool and a walker so you can get to the garden and sit there, without your wife having to shadow you. And yeah, and then he started agreeing. And then I pulled out the assessment form.”
Another support worker found that he was able to use the older person’s reluctance to receive care as a motivational force for promoting the support worker’s own involvement, and to encourage self-care:
A lot of the time, if people don’t want the carers, my conversation is just to be on their side, and just to say, well, “let’s me and you do this, and we’ll show them that we don’t need it”.
Echoing a point made earlier in this HOPES resource, the sentiment that ‘services are not needed’ needs to be used carefully. It may help to establish a common purpose, but in the event that other services are later required, the service user may feel let down and may make them more resistant to the idea of care.
Case study 1: Saima
Hello, My name is Saima. I am a retired nurse and have a daughter called Sayeeda who I see as often as I can. In my spare time I like to contribute to my community by helping out at events and being an active part of my local mosque.
After establishing an initial relationship with Saima, she begins to let you in for a chat and for several weeks now she has opened up to you about the fact she is still grieving for her husband. Although she is now open to talking to you about her husband, she is still struggling to get out of bed and she is still not looking after herself as her fridge still seems poorly stocked. However, she re-assures you she is managing to engage with friends; stating she is now attending community events again and reconnecting with old friends over coffee.
When discussing this with her daughter Yameena though, she says her mum still has not left the house, and is still not engaging well with friends either. She is unsure why her mum would give the impression that things are improving when in Yameena’s eyes nothing has changed yet.
Case study 2: Daniel
Hello I’m Daniel, I used to be in the armed forces, and have a keen interest in military history. I have been happily married now for over 40 years to Linda. We have two beautiful children called Lisa and John, although I don’t get to see Lisa very much. In my spare time I enjoy going for a walk and gardening.
After several failed attempts to get into the house to meet Daniel, he finally lets you in when you realise the affinity he has for his son and GP and say that you’re visiting as they are worried about him and that you only want to come in to have a cup of tea with him to see how he is getting on. However, you are struggling to move beyond this point.
He often appears thirsty and hungry when you meet him, so you manage to succeed in getting him to have a drink with you, and this can sometimes be accompanied by bringing round some biscuits and other bits to go with it (that you often sneak into his fridge when chatting). However, you are still struggling to meet his other care needs in terms of food shopping and encouraging food and liquid intake throughout the day. He could also do with some support in washing.
Case study 3: Jane
Hi, My name is Jane, I live alone and have no immediate family. I was married once, but this came to an abrupt end and I have been alone since. I used to get enjoyment from listening to music and going out for a walk when it’s quiet. I also had a friend I used to speak to called Gwen, but she passed away several months ago.Case study 3: Jane
After your colleagues’ initial attempt to visit Jane, they decided to leave as she was so angry. Then yourself and another support worker return the next day.
Going on the presumption that she didn’t mind visiting the GP (and therefore should trust them), your colleagues says you have come to see her as the GP is worried about her. With this understanding, she lets you in.
Upon going inside, you noticed there are several immediate dangers, with it being clear that she has been using a bucket downstairs as a toilet, she’s not washing and struggles to go out for shopping – mainly doing this in the middle of the night. You offered to fill a hole in in the wall (downstairs) where Jane says the neighbours are spying, and you also offer to bring Jane some shopping when you visit next. However (despite your efforts), she still won’t go upstairs for fear that the neighbours will be better able to see her as quite a lot of the plastering has come away. Upon further discussion, it seems that most of her needs have arisen from a fear of being spied on.
