With the closure of community facilities and the strict rules in care homes leading to enforced isolation for many, lockdown has been a terrible time for people with dementia and their families. See my blog on John’s Campaign which is pressing for more humane visiting arrangements.
One of the most painful aspects of dementia is the possibility that the person will longer recognise their own family. When you have been unable to meet up, this is even more likely.
After such a long time apart, even slow subtle changes will appear more sudden and extreme. ‘How can Mum not know that I’m her son?’ I have written elsewhere about this: Why does Auntie think I’m Grandma? ’Should I correct her when she gets my name wrong?’ Correcting the mistakes of someone with dementia causes embarrassment and is rarely helpful. ‘Oh no – how could I not know my own son? How mortifying!’ It’s not that your mother doesn’t love you any more, it’s just the devastating effects of dementia on her memory.
Our memory normally provides a constant stream of factual information that tells us where we are, how we got here and why we came. Without that, we wouldn’t have a clue what’s going on, or why we feel the way we do.
In dementia the storage of facts in the person’s memory system becomes increasingly patchy, while their feelings continue being stored as efficiently as ever. But with fewer facts taking up space in the person’s mind, it’s almost as if their feelings have more room to grow. This can be especially distressing if they are anxious feelings, with no context to explain them. Even without dementia, stress interferes with our ability to store and retrieve information. The more stressed the person is, the harder it will be for them to make sense of their feelings, and that can easily escalate into extreme distress. So rather than drawing attention to their mistake, it’s better just to make it clear that you know and love them, and that you’re pleased to see them.
If they complain that you’ve abandoned them, try not to take it personally. There is no point in explaining in detail why you’ve been unable to visit them safely or legally – it’s hard enough for those without dementia to keep up with all the rule changes! You can just agree with them that it’s been far too long, but you’re so glad to be with them at last. And when you go home, try to avoid lengthy explanations about when you’ll be coming back – a simple ‘See you again soon’ can be easier to process.
Our online training course ‘Understanding Dementia and Lessening its Impact’ is free of charge to family carers, and we are planning courses for health and care professionals soon. For more information, to order our booklet or join our mailing list, contact us via the website https://understandingdementia.co.uk/
‘… the truth, the whole truth and nothing but the truth.’ That’s what I promised to tell when I appeared at the Old Bailey, after witnessing a theft. But is this always appropriate when we are caring for a person with dementia? Even in everyday life it’s not as clear-cut as we might think.
Some would say that in dementia care, you must always be truthful, no matter what. People whose memory does not keep a reliable record of facts can experience deep shock and intense grief when confronted with a stark truth they had been temporarily and blissfully unaware of. So in care facilities where strict truth at all times is policy, the Incident Book and the Medication Trolley are likely to be on standby. Others have a four step protocol: first tell the truth; if that causes distress try other tactics, such as validating their feelings and substituting a need (eg if they call for their deceased husband, perhaps they’re lonely, so try taking them to the communal lounge), if that doesn’t work try distracting them, and if none of these work, you may use a carefully selected lie that fits in with the person’s biography, and in some protocols that has to have been agreed beforehand and included in their care plan. Quite how you’re supposed to avoid conversations becoming impossibly stilted, I’m not sure.
Last year I attended the UK Dementia Congress with a poster on this topic, and after a plenary debate on ‘environmental lies’, (a slightly different issue involving fake bus stops, which must be very confusing for anyone struggling to make sense of their surroundings) the discussion continued around my poster, and later on over dinner. For someone who was brought up to obey the Ten Commandments, I quite surprised myself with the voracity of my argument. I stated with absolute confidence that in dementia care, I do not believe that strict honesty is always the best policy. But let’s unpick this a little. What the Ninth Commandment actually says is ‘Thou shalt not bear false witness against thy neighbour’. Of course I wouldn’t condone that – or anything like it. I suppose what I mean about ‘lying’ to clients is more akin to chatting about the Tooth Fairy to next door’s seven-year-old, or thanking a favourite aunt for ‘the lovely present’ we didn’t actually like. It’s all to do with considering the person’s feelings before you speak, which is simply good manners.
The idea for my poster began as a reflection on a conversation I’d had with my client Arthur*. He had looked out of the window one January day, seen that nothing was growing and said to me ‘It looks awfully dry out there – if it doesn’t rain soon, we’ll have to water the garden.’ It was a strange thing to say when we’d had heavy rain every day for a week and it had only stopped the day before – just long enough for the path to dry out. But with no grass or snowdrops in that part of the garden, it did look rather bleak. There was no point in highlighting his mistake and reminding him that it was still winter – he would have felt stupid. Neither would it help to tell him not to concern himself with the garden as it wasn’t his job. The house he’d left behind had extensive gardens and when I visited he would often indicate the patch of grass near his window and describe with great pride how it extended ‘right down to the lake at the back’. But here there wasn’t even a pond. If I had called out ‘Honestly! Arthur thinks the garden is too dry!’ the staff might have been amused, but I would have embarrassed him in front if everyone. And if I’d said ‘No, you’re wrong – there’s been a flood warning!’ he’d have become very alarmed. He’d lived by the river, where flooding was always a worry. Any of these comments would have been a direct attack on Arthur’s sense of well-being, the most precious commodity of all in dementia.
Well-being For all of us, there are four elements which combine to make up the sense that life is worth living. We don’t need to be on cloud nine all the time, but we do need to feel reasonably OK. OK in our own skin (self-esteem), OK with the choices we have (autonomy), OK around other people (social confidence) and OK about the future (hope).
Applying these to our conversation, if I made Arthur feel stupid, I would reduce his self-esteem; telling him off would threaten his sense of autonomy, pointing out his mistake in front of other people would destroy his social confidence, and warning him about flooding would replace his sense of hope with one of impending doom. Arthur’s memory system no longer stored that constant stream of factual information that the rest of us rely on in everyday life, to provide the context for our feelings. Storage of facts was now very patchy and becoming ever more so, although his feelings were being stored as efficiently as ever.
We need to understand where facts may not be the be-all and end-all, especially where the person’s memory is no longer storing facts reliably. Instead, we can learn to communicate on a ‘feelings’ level. We already know how to do it in everyday life, so let’s take this skill, and those simple good manners, with us into our caring roles.
These are very strange times indeed, and people with dementia and their families face some particular difficulties. During Dementia Action Week in May I was due to speak on behalf of the charity Understanding Dementia about lessening the impact of the condition on those who live with it. That being cancelled at a time when most of the community services normally available to carers have also ceased has been a double whammy for some. I have written elsewhere about how to explain Covid-19 to someone with dementia and staying in touch with relatives in care during Covid-19. But for many carers, simply coping with the mundane day-to-day care for a family member, without access to any of the usual lunch clubs, day centres or other activities to provide support and respite, can be relentless.
Coping strategies are hard to come by and even harder to use in lockdown with the added challenges that brings. Let’s recognise how exhausting these are: the intense round of shopping, whether that involves social-distance queueing, struggling to get online delivery slots or entrusting lists to kind neighbours or unfamiliar volunteers; cooking and cleaning with no visitors coming in to show appreciation; having to give personal care when regular home care visits are disrupted; and generally trying to keep the person on an even keel when we may feel we are falling apart ourselves.
Recently there has been a lot of discussion about mindfulness. This is the practice of focusing our awareness on the present moment as a form of therapy. There have been webinars and discussion threads on social media, and courses in mindfulness being set up for people with dementia and their carers. But in my experience, people living with dementia can often teach the rest of us a thing or two about it.
Despite the popular belief that they tend to live in the past, people with dementia are often better at focusing on the here and now than the rest of us are. In fact they live in the present far more than we may realise, and often more than their families. Carers are usually too busy thinking about the future – the next meal, the next shower or bath, the next load of washing to be done, hoping that the next night will be more peaceful than the last, or exploring options for long-term care. All these require so much brain power that it’s hard to live in the present moment.
But at a time when there is so much uncertainty all around, it becomes especially important to notice the physical sensations that can keep us grounded. And if we can somehow tune in to the wavelength of person we are caring for, some of the triggers for patterns of behaviour can start to make sense. It might be a piece of music that evokes a special memory, or the way the light falls on a tree outside the window at a certain time of day that triggers a feeling of needing to be somewhere else. If we can enter in to that moment with the person, we may discover what the trigger is, identify with their feeling, and have some insight into where that ‘somewhere’ might be.
Recognising those feelings and validating them are very important. They can represent the first steps away from distress and towards a feeling of well-being and even contentment. For more information, contact me via the website http://understandingdementia.co.uk.
Illustration by Belinda Evans – email@example.com
John’s campaign was set up in 2014 to promote the rights of people with dementia in hospital to have a family member stay with them beyond normal visiting hours. This is endorsed by many hospital trusts and care homes, and to date around 1600 care organisations have signed up to pledge their support. Care homes which hitherto had resented relatives’ involvement as ‘interference’ came to see it as a vital resource. Some managers who previously feared prying eyes discovered that working more transparently could bring unexpected benefits, and even improved CQC ratings. Some have maintained safe family contact throughout norovirus outbreaks simply by training relatives in the same hygiene protocols that their staff use.
And then along came Covid-19 – requiring drastic physical distancing and shielding measures – and put a stop to all that. At the time of writing, many clinical and care staff are living apart from their families to avoid passing it on to them. So even the keenest John’s Campaign ambassadors have had to close their doors to virtually all visitors, and anyone with relatives in residential or nursing care must be going through an especially worrying time. The government guidelines specifically allow some family visiting at end of life and in dementia, but that is not always possible to arrange.
However, some care homes are developing innovative ideas to help residents keep in touch with their families during lockdown. ‘Virtual visiting lounges’ enable relatives to ‘meet’ by arrangement via Skype, Zoom, FaceTime or WhatsApp, with staff facilitating the link where necessary. Caution is needed in advanced dementia, when a disembodied voice or unrecognised face could become more confusing than comforting. But with careful management this has been a lifeline for many, enabling them to maintain connections with their nearest and dearest.
Some care homes are using technology to live-stream their exercise sessions for others to join in, and professional and amateur performers are entertaining residents from their own homes. See John’s Campaign blog for more ideas. I recently took part in an all-age disco run from the Weekday Wow Factor organiser’s living room, with a DJ working from his. The disco is normally held at one of Glasgow’s hottest nightspots and residents from a local care home regularly attend with care staff. This time it was streamed into the home, where the other residents could join in too.
If it has been hard for us to keep up with the latest official guidance, how much more difficult must it be for people with dementia to understand, let alone retain, those ever-changing rules. In most types of dementia, the storage of factual information becomes increasingly patchy, but the memory retains the feelings that went with those missing facts. If you tell the person something alarming, they may register the alarm without the message, so repeatedly trying to explain it may be unhelpful. But for the same reason, people with dementia tend to live more in the present than in the future. As a result they may cope better than their families fear they will in the absence of visits during an extended period, as long as they are comfortable and reasonably content where they are.
Shirley Pearce is an occupational therapist specialising in dementia. She set up the charity Understanding Dementia in 2018 to lessen the impact of dementia on those who live with it. Face-to-face presentations and fundraising events are currently suspended.For further advice and information about online training and information sessions, to purchase a booklet of practical tips or join the mailing list, contact Understanding Dementia or ring 0774 350 1149.
Everyone is different, and we need to tailor our responses to individual circumstances. In most types of dementia, the storage of new facts in the person’s memory becomes increasingly patchy. However, their memory still retains the feelings that went with those missing facts. This means that if you tell the person something alarming, they may register the alarm without the message, so repeatedly trying to explain the details may be unhelpful. Dementia causes anxiety, and stress interferes with memory function, so that makes things worse.
A local day centre, befriending scheme or other group who knows the person should be the first point of contact for practical help, otherwise see the local council website or ring an established local organisation eg Age Concern.
I am often asked for advice and here are a few questions that have come up recently:
Q. I’m self-isolating after contact with Covid-19. Mum has carers but I want to keep in touch. A. Try to check in at least once a day by phone, Facetime, Skype etc – perhaps say ‘I’d like to practise using this new toy – will you help me?’ Ask the carer or a volunteer to help set it up.
Q. Grandad lives with us and keeps forgetting the precautions and getting flustered. How can I make him remember? A. Try to find other/additional reasons for making changes that make sense to him. Repeatedly threatening dire consequences may just ramp up his anxiety.
Q. Dad keeps saying it’s just Asian flu and he’s had worse, so he won’t listen to the advice. A. ‘Covid-19’ might not mean anything but ‘pneumonia’ gives a better idea of what it is.
Q. Auntie’s care home is closed to visitors. She keeps asking why we’ve stopped coming to see her. A. Whether you are self-isolating or social distancing, ‘quarantine’ will be a more familiar term from scarlet fever outbreaks in the past. Ask the home about their arrangements for ‘virtual visiting’ and see Adam Purnell’s 25.03.2020 blogpost for John’s Campaign to see how care homes can keep clients in touch with their families.
Q. My neighbour lives on her own and goes out several times a day. We tried to explain but she just got upset and went out anyway. A. Her anxiety may have driven her to go out in search of comfort and reassurance. A notice inside her front door may help: “Most shops are closed today. Ring ____ if you need anything.” “If anyone comes to the door, don’t let them in or give them anything, ring ____”
For further advice and information about online training and information sessions or to purchase our booklet of practical tips, see Understanding Dementia or ring 0774 350 1149. Face-to-face presentations and fundraising events are currently suspended – join our mailing list so we can let you know when they are happening; we also plan to set up online sessions soon.
Raised toilet seats are issued daily by occupational therapists. But are they all safe to use with the toilet they are fitted to? The most commonly issued seats are incompatible with some modern toilets, even those in residential and daycare settings, with potentially unsafe results.
When my blind father had a short stay in a care home, the manager told us the care home did not supply equipment for respite clients. If Dad required a raised toilet seat, he would need to provide his own. Social Services had issued a seat for use on his toilet at home, so the manager of the care home advised him to take that with him. I only heard of this conversation afterwards, and I resisted the temptation to try and supervise the fitting, so as not to be accused of interfering.
During my Dad’s stay, we visited him on a rota system. The first family member to visit reported that the raised toilet seat was loose. She showed the staff and they refitted it, explaining that it must have been left unsecured after cleaning. The next visitor found the same thing, reported it, and staff refitted it, blaming the cleaner as before. I was puzzled when I heard this: raised toilet seats are normally cleaned in situ. Were the cleaners really removing it every day to clean it?
When it was my turn to visit, I went into the bathroom and all looked well. However, during my visit, Dad went to the loo and returned complaining that he had felt very unsafe, especially when reaching for the toilet roll. I went in and found the seat lying loose on the toilet. I called the carer, who re-fitted it and pronounced it safe. But then she said that she had already re-attached it twice that morning. That rang alarm bells, so I checked it more thoroughly. I tried to ‘jiggle’ the seat but it didn’t move under my hands. However, in the light of Dad’s comments, I sat on it and leaned towards the toilet roll, whereupon the seat suddenly became completely detached. On closer inspection, I discovered that it was impossible to secure that particular seat to that particular toilet. The profile of the toilet allowed only a tiny area of contact for the fixing screws. Moreover, as the side fixing points on the seat corresponded to the widest point of the toilet, the screws could not possibly make the required three-point attachment with the front fixing. A millimetre of movement in any direction would loosen it completely.
I requested that the seat be replaced with a suitable one urgently, and I was advised to take it up with the manager on Monday. However in my opinion it needed to be made safe in time for Dad’s next trip to the loo. I was prepared to buy a new seat if necessary, but it was Saturday morning and the nearest mobility shop would be closing at midday, so it was urgent. None of the staff knew what to look for, but eventually they agreed to show me to the store cupboard, where I found one that would fit. It was attached, under my supervision, by the chef/handyman. I’m not at all sure about the hygiene implications of that combination of roles, but I’ll leave that for another blogpost…
I then reported the issue to anyone who would listen:
The Senior Carer said casually, ‘Oh that’s OK. It’s quite firm – it only moves when he sits on it.’ I pointed out that ‘when he [sat] on it’ was the very time it needed to be secure, but she did not understand the significance of what I was saying. So I got her to sit on it and then shift her weight to one side, as if to reach for the toilet roll. Then, quite suddenly, she understood completely!
The Care Home Manager showed no interest, but just said that she left ‘all that sort of thing’ to ‘the two occupational therapists who come each week’. They were actually physiotherapists.
The Physiotherapists looked horrified and said ‘Oh no, we don’t do toilets!’ Their remit was to prescribe exercises and walking aids and to supervise their use, but toilets were of no interest to them, even when I indicated the risk of preventable injury in this very vulnerable client group.
The Care Home Owners arranged to check all the raised toilet seats they owned throughout their chain of homes. However, they stressed that they did not undertake to supply equipment for respite clients, and the only safety checks ever carried out on clients’ own equipment were for electrical items.
The Care Quality Commission (CQC) contacted the inspector for that home, but he said that CQC reports don’t cover this issue, so they did not get involved any further.
The Medicines and Healthcare products Regulatory Agency (MHRA) did not understand the compatibility issue and informed the manufacturer that the raised seat was faulty. The manufacturer was not pleased – there was nothing faulty about their equipment or its design, it was just incompatible with the toilet to which it had been fitted. Once I had explained this again to the MHRA, they ordered the manufacturer to amend the instruction leaflet for that specific model of raised toilet seat. But what about other models – or other brands? The same issue will arise whenever a raised toilet seat is fitted without checking compatibility between the toilet and the seat.
The Local Authority reminded us that this particular raised seat had been loaned to my father for use with the toilet to which their staff had fitted it. I asked whether the instructions had included a notice to that effect. If so, it could be shown to care home managers when they instructed clients to take in ‘their own’ equipment that was actually on loan. They replied that they don’t include any written instructions. Even the manufacturer’s carefully amended instructions would not be seen, as ‘Each item of equipment purchased by our service comes with a single instruction leaflet, and it would only get lost if we sent it out to a client’. There was no record of instructions, and the packaging was not kept once an item had been loaned. That meant that only the first staff member to fit a new seat would get to see the manufacturer’s instructions; on subsequent occasions, staff would just rely on their previous experience of fitting toilet seats. The end client would only be shown how to use it and clean it in situ.
The Disabled Living Foundation immediately amended their guide ‘Fitting a Toilet Seat’
(DLF 2012) and sent it back for my comments, before uploading it to their
website. I wonder how many people read that page?
The Health & Safety Executive (HSE) stated that their remit is to reduce work-related death and serious injury to employees. In care homes, that would include care workers and other staff, but not residents. They referred me back to the CQC. HSE do get involved whenever a resident dies in such an accident, but it’s a bit late by then.
This problem has wider implications. I subsequently discovered similarly incompatible toilet seats at a day centre and also in the home of a Social Services client. In neither case had anybody reported or apparently even noticed the hazard. However, the day centre manager said ‘I must do something about that immediately – someone could fall and break their hip, and they might not recover!’ At last, someone was taking the problem seriously. I also reported it to Social Services but I was not able to follow up to check whether either seat was ever replaced, because our service was reorganised and I was no longer involved.
I appeal to occupational therapists, assistants, and anyone else who issues and/or fits toileting equipment, to be aware that just because a toilet seat feels secure when tested with the hands, that does not necessarily mean that it is safe for the client to sit on and use.
Falls from a loose toilet seat can lead to injury and even death. (Daily Mail 2008)
Feeling insecure on the toilet makes it difficult to relax and can lead to constipation.
Many care homes ask respite clients to provide their own raised seat, which is then fitted by care staff. Training for care workers does not normally include the fitting of toileting equipment.
The ‘usual’ way of testing a toilet seat once fitted does not adequately replicate the user shifting their weight.
The NICE falls prevention guidelines (NICE 2013) do not cover toileting equipment.
NHS and Social Services do not normally issue written instructions with equipment on loan.
The only NICE guideline for occupational therapy with older people in residential care (NICE 2008) relates solely to physical activities as interventions for mental health.
Care homes often have no input from occupational therapists who are trained in this area.
Apart from occupational therapists, most health and social care professionals, even care home managers, have little or no understanding of the safety implications of this issue – unless they have ever witnessed the problem or dealt with its consequences.
There is an important role for occupational therapists within care homes, not just for providing organised ‘activities’ but in facilitating ordinary activities of daily living.
Going to the toilet is one of the most basic activities of
daily living and we need to ensure that people can sit comfortably and safely
while they do it.
Since writing my blogpost on Dementia Friendliness https://shirleypearceotwordpress.wordpress.com/2018/12/29/dementia-friendliness-what-is-it-exactly-awkward-questions/, I have had occasion to visit the special ‘Dementia Friendly’ ward. I hadn’t been there for a few years, and I had to ask directions from several people before I could find it. The name of this ward is missed out on most of the signs, although there is a different ward with a similar name, which appears on every signboard. However, when I eventually found the right ward, the décor felt welcoming, and there was a video projector constantly projecting nostalgic photographs on the wall. At least I think that’s what they were – it was hard to identify the pictures because there were various bits of equipment in front, including a sensory therapy machine. This reminded me of the sensory equipment in a dementia day centre I worked in a few years ago. There had been a major fund-raising effort to purchase and install it all in a special room, although I never saw anyone actually go in there, except to show it off to visitors.
While I was visiting my friend in the hospital, a commotion broke out near the toilet. Apparently a man with dementia had gone in to use the toilet, but when he tried to come out, he couldn’t work out how to open the door. The lock inside was operated by a lever which did not immediately look like a lock, and it was situated just below the door handle, so when he had his hand on the door handle, he couldn’t see the lock, because his hand was in the way. However, in case of just such an emergency, there was a corresponding screwhead on the other side of the door to enable staff to unlock the door from the outside. Unfortunately the screwhead was so worn from previous occasions that it was now virtually impossible to unlock the door from the outside.
All the time the man was trapped in the toilet, he repeatedly banged the door, tried to force the handle and was at risk of injuring himself and doing further damage to the lock. The constant rattling of the door made it even more difficult for anyone to help him from the outside. His shouting, together with that of several members of staff, who were attempting to give him instructions in a variety of different accents, attracted other patients to the area. I could see that a difficult and potentially dangerous situation was beginning to develop. I advised staff and patients to leave the area and I talked calmly to him through the door, indicated the position of the lock, and in a very short time he was able to unlock the door and come out. On his release, one of the staff advised the man with dementia to remember not to lock the door when he goes to the toilet in future.
I suggested to the staff that they mark that toilet ‘out of action’ and just use the others, until the damage could be repaired. ‘But the others are all like that too,’ they said. Sure enough, they were all the same design, with evidence of similar damage, although that one was the worst affected. ‘How soon can we get someone from the maintenance department to fix it – will there be anyone on duty today?’ I asked. ‘Not on a bank holiday,’ they said. ‘Anyway, it’s been like that for months.’ I left it for the staff to report ‘through the proper channels’ the following day.
When I visited again the next day, I saw a familiar-looking patient passing urine on the floor, and one of the nurses asking him incredulously ‘Why on earth did you go on the floor instead of using the toilet? It’s only over there.’ I suggested that last night’s events might have had something to do with it, but she didn’t know what I was talking about. When I explained, she said ‘Oh, that’s always happening,’ as if a man with dementia getting distressed by becoming trapped in a toilet with a damaged lock was such a frequent occurrence as to be hardly worth mentioning.
A couple of days later I visited again and talked to a
different member of staff. This time I was told that this issue had already
been reported numerous times but that it was apparently far too expensive to
replace the locks. Let me get this straight. It’s worth buying expensive
equipment that nobody uses in the name of Dementia Friendliness, but not
maintaining existing equipment. And it’s far too expensive to replace broken and
unsuitable locks on a frequently-used toilet in a Dementia Friendly Ward with
locks that are easier for the actual people with dementia to actually use…
When I started my nursing training at Great Ormond Street, it was almost the only hospital which had open visiting for families. Parents took on as much of the care as they wanted, their involvement helped their child recover more quickly, and we knew they’d be able to manage any ongoing care on discharge home. When I moved to a general hospital, their policy was to exclude families, apart from very short visiting hours, but this didn’t feel right. At GOS we had understood that families knew the person better than we did, so why didn’t all hospitals know this?
As my parents got older, they naturally wanted to stay at home as long as possible. When this became more difficult, one of my three sisters moved in to look after them, and after Mum died, she continued to care for our blind father for many more years. The others of us went there to help out when she needed a break. Dad was cognitively sharp and could manage independently, although his arthritis made him slow. But at home it didn’t matter how long it took him to get up in the morning or to retire at night.
When my sister needed surgery and time to recuperate on her own with her husband, my father spent a month in a care home.
Care Home 1
Even with very little sight, Dad had no desire to be washed and dressed by a stranger when he was perfectly capable of doing it himself. He just needed to learn where everything was, with someone within earshot the first time, and he could manage alone thereafter. On the first night I stayed until he was in bed, and promised to return in the morning. The staff insisted that it was their job and I’d ‘miss the whole point of respite’ if I tried to help. But it was they who’d missed the point – I didn’t need respite, and my sister was already having the break she needed. When I visited the following afternoon, the manager was furious that Dad had refused to let the carer go until he’d finished dressing – at his own s-l-o-w pace. So breakfast was very late for all the residents and everyone’s routine was upset. Allowing me to stay with Dad for as long as it took on that first morning would have avoided inconveniencing anyone else, and he’d have needed very little carer input on subsequent mornings.
Some years later, after a spell in hospital and now requiring round-the-clock care, my father was discharged to a nursing home that promised ‘nursing care second to none’ and my sister travelled with him by ambulance.
Care Home 2
On arrival at the home, the manager asked her to ‘just come with me a minute, I need to show you something’. She took her upstairs to his room and shut the door, while Dad was taken in the lift in a wheelchair, something we obviously weren’t meant to see, as it went against the hospital’s instructions and resulted in a minor injury. Dad was upset that my sister had abandoned him when he needed her, and she felt she had been tricked. She called me and my other sisters for moral support, but the manager made it quite clear that none of us was welcome.
Dad didn’t understand the carers and they didn’t understand him. As well as his sight loss, Dad had no hearing in one ear and very little in the other, so we had to explain that talking clearly on his hearing side would get a far better response than shouting on his deaf side. If carers addressed him by name, he’d know that they were talking to him, and not to each other. Otherwise, when he was hoisted, he would tense up in terror when he unexpectedly became airborne, his legs flailing against the metal frame. As a result, he was injured, repeatedly.
Dad had to learn how to speak to them too – he was surprised when care workers didn’t understand ‘passing water’ or ‘passing a motion’, or what it meant if he asked for a bottle. We had to teach him a new vocabulary that we called ‘carespeak’, including new (to him) words like ‘wee’ and ‘poo’ to communicate his needs. I am profoundly grateful that he didn’t have dementia; that had been his greatest fear, and it would have made it much harder for him to adapt. But he did have an episode of delirium, and then he needed one of us with him more than ever.
Very soon it became clear to his four daughters (with nursing, physiotherapy and occupational therapy experience between us) that the staff didn’t have the skills to care for him safely, so the main purpose of our visits became protecting our father. As time went on, we became more protective and they became more defensive, eventually banning us from his room during personal care. But to spare the blushes of un-confident carers, we were expected to submit our father to be bashed, bruised and bloodied at their ill-equipped and inadequately-trained hands with no-one to defend him.
I had no choice but to raise a Safeguarding Alert with the local authority. The manager responded by evicting my father. We frantically searched for a new home that was prepared to take on our now very frail father and his now fiercely protective daughters.
Care Home 3
We managed to find a home that was prepared to work with us. It wasn’t perfect, nor did it claim to be, but any concerns were dealt with positively and courteously. The carers were skilled and confident around us, and with our help they soon learned how to communicate with Dad effectively. They encouraged us to come and go freely, just as family members do at home.
When Dad became very ill and I visited him at night, I was made especially welcome. ‘It’s so nice of you to come,’ they said, ‘we don’t often get to meet people’s families on the night shift.’ During our father’s final week, we took turns to stay at his bedside, sleeping on a recliner chair when tiredness overtook us. At the end when his breathing changed, a carer woke me gently, did her observations quietly and crept out, leaving me to say my farewell in peace.
The first two homes viewed our family as a threat, and went to a lot of trouble to keep us at bay. The last one recognised that Dad was precious to us, that we were important to him and that we could be a valuable resource to them. This brought out the best in everyone, as instead of combat and conflict between family and nursing home staff, there was cooperation and collaboration. This benefited everyone, especially our father, whose feelings were of course the most important in this situation.
During the time my father spent at the mercy of Care Home 2, there was a distressing delay in getting my father’s care sorted out as it was Christmas and the manager was often unavailable. Moreover my sister and I (both health professionals) had been (separately) misinformed that as a self-funding client, my father didn’t qualify as a ‘vulnerable adult’ and so wouldn’t be entitled to safeguarding protection under the rules.
I contacted Action on Elder Abuse https://www.elderabuse.org.uk/ on their helpline 080 8808 8141 for advice. They clarified the situation and encouraged me to contact the Local Authority Safeguarding Team straight away. The Safeguarding Team were brilliant, sending a specialist occupational therapist to visit the care home within 24 hours. She invited me to attend the assessment, where she confirmed the care techniques and equipment were unsafe, and immediately banned them for use with my father. She then provided a detailed report for us to share with the new care provider. We will always be grateful for the support we had during that awful time, and I feel for those who don’t have family, friends or any access to the support they need.
I displayed this poster at the Royal College of Occupational Therapists’
annual conference in 2017 and at the OT Show. The aim was to challenge the prevailing
view that ‘challenging behaviour’ is just a characteristic of dementia, something
that is ‘to be expected’ at certain stages of dementia, and it’s best just to deal
with it as and when it happens.
Behavioural incidents upset everyone involved and it is often these events
which precipitate a transfer to more restrictive and expensive care settings.
If we could only understand their causes, prevention would start to become a
In normal memory, we have a constant supply of recent factual information
that provides the context for our current feelings. Dementia increasingly
disrupts this supply[i]
and consequently, people who live with dementia may misinterpret innocuous
events as threatening. In his seminal work Dementia Reconsidered, Tom Kitwood[ii]
observed that the actions of even well-intentioned caregivers can inadvertently
As long ago as 1920, Watson and Rayner[iii]
were writing about extreme reactions to perceived threats. Too often we don’t recognise
such responses for what they are, and instead treat them merely as symptoms of the
person’s condition, while ignoring the distress that triggered them. Then we
are surprised to discover that our treatments often achieve little or no
benefit, and potentially some harm.
In dementia, well-being does not depend on ‘well-managed’ behaviour. Conversely, restoring well-being can even help re-establish normal behaviour. Health professional and academic with lived experience, Kate Swaffer, highlights the preventive aspect of good care [iv]. Not only is restoring well-being the desired outcome of an intervention, but it should also be the first step in that intervention. In dementia, because feelings become more important to the individual than facts[v], this can be easier to achieve than in most other conditions, reducing the need for costly restraint and medication. If the health and social care professions understood this better, they could save people with dementia a great deal of distress, their carers a lot of heartache and our beleaguered NHS a significant amount of money. http://understandingdementia.co.uk/
Pearce, S (2016) Managing risk in dementia care: promoting well-being through the
SPECAL® method. College
of Occupational Therapists annual conference and exhibition. 28-30 June 2016, Harrogate,
Kitwood, T (1997) Dementia reconsidered:
the person comes first. Maidenhead: Open University Press.
Watson, J B and Rayner, R (1920). Conditioned emotional reactions. Journal of Experimental
Psychology, 3(1) 1–14.
Swaffer, K (2015) Not just a ‘challenging behaviour’. Australian Journal of Dementia Care 4(3) 21-24.
[v] Garner, P (2008) The SPECAL Photograph Album. 3rd ed. Hawling: Windrush Hill Books.