When bogs aren’t bog standard

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.

The raised toilet seat safely fitted with 3-point attachment to Dad’s toilet at home.
There was good contact between the fixings and a flat area on the side of the toilet.
The care home toilet (with a different raised seat fitted) showing its problematic profile.
With no flat area, there was very little contact with the fixings.

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.

Disabled Living Foundation (2018) Fitting a toilet seat. Available at:  https://www.livingmadeeasy.org.uk/scenario.php?csid=327 Accessed on 06 July 2019.

Daily Mail (2008) Toilet trouble: six people injured and one dead after falling off faulty raised toilet seats. Available at: https://www.dailymail.co.uk/news/article-1080018/Toilet-trouble-Six-people-injured-dead-falling-faulty-raised-toilet-seats.html  Accessed on 06 July 2019.

National Institute for Health and Clinical Excellence (2013) Assessment and prevention of falls in older people. Clinical practice guideline. Available at:https://www.nice.org.uk/guidance/cg161/evidence/falls-full-guidance-190033741 Accessed on 06 July 2019.

National Institute for Health and Clinical Excellence (2008) Mental wellbeing in over 65s: occupational therapy interventions and physical activity interventions. Available at:  https://www.nice.org.uk/guidance/ph16/chapter/1-Recommendations#occupational-therapy-interventions Accessed on 06 July 2019.

Dementia Friendliness – what is it exactly? A postscript

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…

A tale of three care homes

This was originally published on John’s Campaign website https://johnscampaign.org.uk/  recalling my family’s experiences of three care homes.

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.

Fight, Flight or “F*** off!” Challenging our understanding of behaviour in dementia

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 possibility.

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 cause distress.

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/

[i] 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, UK.

[ii] Kitwood, T (1997) Dementia reconsidered: the person comes first. Maidenhead: Open University Press.

[iii] Watson, J B and Rayner, R (1920). Conditioned emotional reactions. Journal of Experimental Psychology, 3(1) 1–14.

[iv] 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.

Dementia Friendliness – what is it exactly? Awkward questions…

What do people with dementia need – more people wearing badges, lots of tick-box actions, or for the rest of us to understand how to lessen its impact?

When David Cameron introduced the Dementia Friends campaign in 2013, I was intrigued. At the time I was doing some consultancy work for the Contented Dementia Trust http://www.contenteddementiatrust.org/, an organisation dedicated to promoting the lifelong well-being of people with dementia through its SPECAL method. The Alzheimer’s Society has publicly denounced SPECAL https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/specialised-early-care-alzheimers-specal. However there is some evidence of its effectiveness in terms of quality of life for individuals living with dementia[i] and their family carers[ii].  

Dementia Friends sessions use an analogy to explain the condition. Memories are represented by books stored on two bookcases: a sturdy oak one for feelings and a flimsy plywood one for facts. The top shelves store the most recent memories, with older ones lower down. Dementia shakes the bookcases, causing books to fall off the plywood one, especially from the upper shelves. Those from the lowest shelves are more likely to stay put and the oak bookcase isn’t affected at all.

At these sessions, each person pledges an ‘action’ and gets a badge to show that they are now a Dementia Friend.

There are over 2.5 million Dementia Friends, but I sometimes wonder where this number comes from. I probably account for a few myself. I got the second of my four Dementia Friends badges when I attended a Dementia Friends session to see what all the fuss was about, and the third when I trained as a Dementia Friends Champion to find out what they are taught. As a health professional specialising in dementia, I felt it was important to learn everything I could.

I asked questions during the DF Champion training session to help me understand it better.

  1. What evidence is there for this explanation? (Well, as a health professional, I had to ask that …) Answer: ‘It’s not meant to be scientific.’
  2. How do the ‘books’ get back on the ‘bookcase’? In other words how does the person recall something that they couldn’t recall the previous day, or even a few minutes earlier? Answer: ‘It’s only an analogy.’

I hesitated to ask a third question, but I wondered what explanation would be given for new memories of experiences that happen after the onset of dementia. In my view this is a key difference between normal memory and dementia.

We were each asked to pledge an ‘action’. Some of the suggestions sounded rather unhelpful to me, but the trainer accepted them all. She had started by admitting she had no expertise in dementia, so perhaps she didn’t know which to reject.

That evening, the trainer rang me: ‘I think you are going to find it difficult to deliver the Dementia Friends sessions because being a mental health professional, you know too much.’ I haven’t come across any other field where knowledge of that field is considered a hindrance to spreading awareness. I haven’t delivered any Dementia Friends information sessions, not because of her advice, but because I knew I could guide people to a better understanding of dementia in other ways. I have since set up a training organisation called Understanding Dementia http://understandingdementia.co.uk/ to bridge the gap between awareness and a real understanding of the condition, how it affects the person and how we can lessen its impact.

Although the Alzheimer’s Society does not call Dementia Friends Information Sessions ‘training’, there is a lot of misunderstanding, even among professionals. During my preparatory market research, a care home manager told me her care staff didn’t need any dementia training as they were all Dementia Friends. Other health-related companies said that registering with Dementia Friends made training unnecessary, and even that Dementia Friends training (sic) is accredited by the Alzheimer’s Society. Getting training accredited requires rigorous testing and high standards, and it is time-consuming and expensive to achieve. However these beliefs are understandable when the government is offering a financial incentive to businesses to sign up. One of the criteria for NHS England’s Quality Payments System for pharmacies is that 80% of the staff become Dementia Friends https://www.england.nhs.uk/wp-content/uploads/2018/11/quality-payment-guidance-february-2019-v2.pdf p37. There doesn’t seem to be an exemption from this for staff who have done any actual dementia training – as if even a PhD in Dementia Studies is somehow trumped by being a Dementia Friend. But of course that’s no problem, because you can easily become a Dementia Friend online by watching a 5-minute video during your coffee break. I have no wish to knock any attempt to raise awareness of the condition, but one of the unintended consequences is that some healthcare companies see it as a cheaper alternative to specialist training. It’s as if attending a session or watching a video has somehow acted as an inoculation against the need for further learning.

I received my very first Dementia Friends badge simply for attending a conference on dementia, when they were handed out to all delegates. I guess that one of the organisers was a Dementia Friends Champion, keen to see how many ‘Dementia Friends’ they could notch up, and we were a captive audience of well over 100. There too I asked awkward questions. A hospital doctor gave a presentation on making one ward ‘dementia friendly’ at a cost of £200,000. It was decluttered, reorganised and redecorated, with new non-reflective and non-slip flooring and improved signage. All of these benefitted everyone, but I was unclear how his project made the ward any more ‘friendly’ towards people living with dementia, so I asked how much of that £200,000 was spent on staff training. ‘Oh no,’ he replied, ‘it was nothing to do with training, it was all about making the place more dementia-fr— Oh! I see what you mean!’ It hadn’t occurred to him that staff education might have a part to play in improving the experience for anyone with dementia. Ironically, the improvements to signage did not extend beyond the ward entrance, so when I went to admire the end result, I had great difficulty finding it.

I did say that I had four Dementia Friends badges. When I had a puncture recently, I found the fourth one embedded in the tyre.

[i] Pritchard EJ and Dewing J (2001) A multi-method evaluation of an independent dementia care service and its approach. Aging and Mental Health, 5(1) 63-72.

[ii] McCrae N and Penhallow J (2018) SPECAL: first evaluation of a course for carers. The Journal of Dementia Care 26(6) 30-33. ff

Behaviour in dementia – an alternative view

Behaviour that challenges? Behavioural and Psychological Symptoms of Dementia (BPSD)? Dementia-related behaviour? Or is there a simpler way of looking at this altogether?

Without dementia, our behaviour in response to our feelings is normally tempered by social norms and beliefs. However, in extreme circumstances, with neither time nor headspace for reflection or moderation, we act directly on our ‘fight or flight’ instincts. People without dementia aren’t normally criticised for lashing out at an attacker or trying to escape from extreme danger.

In most dementias, the person’s memory retains facts less and less reliably over time, but it continues to store, as efficiently as ever, the feelings those facts have generated. So those feelings can exist without any context to explain them. We all need to find facts to fit our feelings, so that we can make sense of them and decide what to do next. Feeling fine without knowing why you feel that way is one thing, but unexplained distress can be deeply disturbing, even terrifying. Trying to interpret feelings using out-of-date or misinterpreted facts can create a mismatch, resulting in seemingly odd behaviour. For a carer, trying to deal with behaviour you don’t understand has risks for both you and the person concerned, and your response can unintentionally make it worse. So understanding the cause is the key to responding in a way that makes the person feel valued, free, accepted and safe.

Aggression – verbal or physical (unacceptable negative response) This may be a perfectly normal response to extreme fear, pain or frustration. Sometimes the context isn’t obvious to the carer or even the person concerned, so quizzing them won’t help. They are unlikely to be able to join you on your wavelength, but you might be able to find theirs. See also illusions, irrational behaviour and PTSD.

Appetite changes If the parts of the brain that process sensory information are affected, the senses of smell and taste can change. Even favourite foods can lose their appeal, but a liking for sweet things seems to increase over time, especially the comforting yumminess of chocolate. When that is combined with lack of stored factual memories of whether the last meal or snack was recent or longer ago, it’s easy to see why someone with dementia might accidentally miss a meal, eat twice or have a less healthy diet than before.

Confabulation (fabricating ‘imaginary’ experiences) Most of us piece together the elements that we’re sure about from a past event, and then ‘join the dots’ to complete it, using memory, logic and common sense. The necklace isn’t in its place. Granny is forgetful and the carer remembers her losing it before, so she’s ‘obviously’ misplaced it again. Granny says the carer took it. Obviously. She must have done. That carer has daily access to the drawer. However, neither of them saw what happened, so maybe they’re both wrong. Perhaps Mum noticed the clasp was damaged when the carer wasn’t there and told Granny she was getting it mended, but Granny’s memory didn’t store those facts. The carer ‘jumped to the wrong conclusion’ but Granny ‘confabulated’, because that’s what people do when they have dementia. Actually, they both got it wrong for similar ‘joining the dots’ reasons; it’s just the way it’s described that’s so different.

Crying (for no apparent reason) You may not know why someone is crying, and they might not know themselves, but upset feelings are real and painful, so don’t dismiss them just because you don’t understand why it’s happening. Physical pain, frustration, sadness, unexplained loss or bewilderment – all may be possible explanations.

Delusions aren’t behaviours – they’re false beliefs. In dementia these are usually caused by illusions, misinterpretations or ‘joining the dots’ errors (see confabulation).

Disinhibited behaviour (usually behaving inappropriately in public) This can be a response to emotion without context (see paragraph 3) or may be caused by damage to areas of the brain concerned with impulse control, social and sexual behaviour, as in Fronto-Temporal Lobe Dementia.

Falls People with dementia are more likely to fall and there are many reasons (see illusions, incontinence, hoarding, sleep disturbances, pain, disinhibited behaviour, irrational behaviour, PTSD) as well as difficulties in managing balance and mobility issues.

Hiding (deliberately?) Putting something down somewhere that seems logical at the time, but then not being able to find it later, is easily done at times when our concentration has lapsed momentarily. See confabulation: the carer might assume that Granny has ‘hidden’ her necklace, when perhaps she has ‘misplaced’ it, or it might even have been moved by someone else.

Hoarding (keeping things ‘in case they come in useful’, even when that’s not likely) Many older people have lived through times of deprivation or shortages, when this type of behaviour might have been normal, even sensible. But when that habit is combined with memory changes in dementia, the result may appear to be a pointless accumulation of random things that are of no possible use to anyone.

Illusions (misinterpretations by the brain when facts are missing) This can happen fleetingly to anyone when startled. Sensory impairment causes extra problems when combined with dementia. If we don’t see or hear clearly, we use memory to fill in the details – that loud bang was probably a door slamming (if someone just left the house), a firework (if it’s Bonfire Night) or a dropped pan (if someone is washing up). See also confabulation and PTSD.

Incontinence (escaped wee or poo) This can be a matter of not getting there in time, not managing to hold on, leakage, not knowing you need to go, etc etc. Factors include distraction, not finding the toilet, not managing clothing, mobility issues, constipation, infection, bowel disease etc etc. These can happen to anyone but dementia can make them harder to manage, and ‘just in time’ can easily become ‘just too late’.

Irrational behaviour (behaviour for which others can see no logical explanation) The person behaves in line with their feelings, which may have been caused by something the carer knows nothing about (see paragraph 3 re mismatch). See also illusions, PTSD.

Mood swings Recent factual memories give context to our feelings, so our mood tends to remain stable unless something new happens. But in advanced dementia, when there are few reliable recent facts to go on, a feeling can easily trigger out-of-date and possibly traumatic memories, and the person’s mood can change in an instant. (See also illusions, confabulation, PTSD.) Fortunately, it can improve just as quickly, if we know how to respond.

Paranoia (false belief of personal threat) This can be associated with illusions, hiding etc – when memory hasn’t stored the facts of an item being moved, it can seem ‘obvious’ to the person that someone else did it with malicious intent. However, unless you know the facts, it isn’t safe to assume that they didn’t either. Anyone with dementia can be vulnerable to financial and other abuse, so if the person raises a concern, don’t dismiss it without checking. See also PTSD.

Perseveration (repeating an action or part of an action) If your memory didn’t store what you’re in the middle of doing, you can get ‘stuck’ part-way through the process.

Poor appetite Eating alone can be a cheerless activity; being watched can be distinctly off-putting. Eating is a multifaceted occupation and an important social ritual. Care workers are rarely encouraged to eat with their clients, and may not even be allowed to do so. They often use the time to complete other tasks or paperwork, or if the person can’t feed themselves unaided, they spoon-feed them. Better to eat with them as a social activity whenever possible, giving any help required as unobtrusively as possible to preserve their dignity. See also swallowing difficulties.

Post-traumatic stress disorder (PTSD) If people with dementia have been through horrific experiences in the past, sometimes their ‘joining the dots’ errors can lead them to memories of past trauma. Such memories, without their context to explain them, can become self-perpetuating, which must be unbearable.

Repetitive questioning (asking the same question over and over again) If your memory hasn’t retained the answer, you won’t know what it is, so you may well ask again – and again.

Restlessness (a feeling of wanting to get going and do something) If your memory didn’t store what you were about to do, it can retain just that restless feeling. This is sometimes linked to physical discomfort and/or lack of exercise (see also irrational behaviour, sundowning, wandering).

Seeing things differently This can be the result of damage to the back of the brain eg in posterior cortical atrophy (PCA). Sometimes, however, it is simply misinterpretation or illusion, as we normally rely on context to make sense of what our eyes see.

Sleep disorders Disrupted routines, night staff in day clothes and noisy night-times can all make it hard to distinguish night from day. Bright or daylight-type (blue toned) light in the evening and night can upset our body’s circadian (day/night) rhythm. Inactivity and memory changes affect our ability to gauge the passage of time. Pain and anxiety can cause insomnia and some prescribed medications can cause sleep disturbance as a side effect.

Social withdrawal (avoiding social situations one used to enjoy) Limited access to recent facts can lead to embarrassing social encounters, so it can become easier and less painful to stay away.

Sundowning (trying to leave a care facility in the afternoon/evening) Going home at the end of a day at school or work, or collecting children from school, may have been normal and habitual. Lack of recent facts can make a person’s current surroundings feel totally unfamiliar, even when they have been living there for decades, so they may feel as if they are ‘out’ or ‘away’ and not at all ‘at home’. So it is not very surprising if someone wants to leave (see also restlessness).

Swallowing difficulties These may be part of withdrawal or vegetation, and/or there may be a physical element. The process of swallowing even occurs while we are asleep, but when we eat, it is under our conscious control. So in the later stages of dementia, it can become hard for the person to know quite what to do next (see perseveration) in order to make the food go down. Small quantities of soft, moist, appetising food are easier to swallow than anything hard or dry.

Vegetation (becoming passive and inactive) This may be linked to the ‘freeze’ instinct, when frightened or injured animals instinctively keep still so that they are less visible to predators. If life becomes unbearable (see also PTSD), some people appear to ‘give up’, refusing food and drink, becoming catatonic (immobile and unresponsive) and just waiting for it all to end. Don’t assume that they can’t hear you, or that they’ve lost their mind. Tender loving care is still (perhaps especially) important now, and a soothing voice may be comforting.

Wandering (walking somewhere, but being unable to find, or even identify, the intended destination) This can be linked to restlessness, lack of exercise or just a normal desire to go for a walk, combined with a memory that doesn’t store facts or places well. See also sundowning.

Most of these ‘behaviours that challenge’ might be better described as normal responses to challenging situations. So it’s not the behaviour that’s the real problem. If it’s caused by distress, then that’s what we should be trying to ‘manage’. The best way to do this is to validate the person’s feelings, reduce the causes of their stress (where at all possible) and do our best to promote their well-being. As a result, we might notice that some of these behaviours begin to subside and may even stop altogether. Or maybe we’ll just understand them differently…

See also http://www.understandingdementia.co.uk/

Making the going easy

Recently I heard of a client refusing to use the commode provided for them. Have you ever sat on one? I doubt very much if the designer of the one I tried this week ever did – it was never going to promote comfortable elimination. Where a well-designed standard loo seat encourages the pelvic area to ‘open up’, this one had the opposite effect, and the back of it pressed painfully against my tailbone, leaving no space for the all-important DIY aftercare, without either balancing precariously on one cheek, or half-standing, which not everyone can do. But given the choice of wiping their own bum or having someone else do it, most people would prefer the former, even if it’s a struggle.

And don’t get me started on bedpans. Their design seems to have improved very little since those freezing-cold/boiling hot steel ones (fresh from rack or steriliser respectively) we used to use in hospital. Now they’re often scratchy cardboard that’s a risk to delicate skin. I’d love to work with a manufacturer to improve them – I had a few ideas while teetering on one, and then being unable to get off it, in hospital when both shoulders were out of action. Comfort, both physical and psychological, and safety (you do need to actually feel safe too!) are terribly important during this most basic activity of daily living. It only needs a little discouragement, whether by embarrassment or other discomfort, to slow everything down. Delayed defaecation makes the stool dryer and harder to pass, and can make everything grind to a complete halt. This is especially true after surgery, injury or illness, when fatigue can be overwhelming. Constipation is seen as an almost inevitable after-effect of surgery, general anaesthetic or any procedure that requires ‘nil by mouth’ and/or bedrest for more than a short time. But if preventive measures were routinely included in the care plan, this might be avoided.

A friend of mine took opiate painkillers in desperation to reduce the pain of severe constipation and another took Imodium to try and deal with the watery overflow from an already-blocked bowel. In both cases, treating the most obvious symptom made the underlying problem, and therefore the symptom itself, an awful lot worse. Moreover, it had been building up for some time, and could have been addressed at a much earlier stage. It’s easy to see how poor communication with health and care professionals (see my previous blog) can lead to such situations. And in older age anyone with mobility problems may be offered a raised toilet seat, to make getting on it, and especially off it, easier, often without considering the possible side-effects. Unfortunately, the bowel is more difficult to empty when you’re in the ‘normal’ upright sitting position as the colon is kinked, but it’s much easier in a squatting position. See the wonderful unicorn video on http://www.squattypotty.co.uk/ for entertainment explanation.

A few months after that eventful honeymoon, I tore a ligament and couldn’t cope with stairs. Our only bathroom was halfway up/down the stairs, so whichever floor I was on, I couldn’t get there unaided. My new husband showed how much he cared by buying me some flowers a flushable PortaPotti. I was delighted – it sat by the bed, unobtrusively draped in a rug between uses, and when it needed emptying, the contents were liquefied, deodorised and unrecognisable, and my dignity was spared. Soon afterwards I used it on a road trip through the Scottish highlands, when conveniences were few and far between and the trees far too narrow to hide behind with my strapped-up knee. Ever since then, it has come with me on every camping trip, so that rather than traipsing through wet grass by torchlight in pyjamas and wellies, I can relax on my own comfortable, just-the-right-height private en-suite facilities.

If those who supply equipment and care (whether in hospitals, care homes or the community) could imagine themselves, not only in their clients’ shoes but on their bog-seats too, they could find ways to make the ‘going’ a whole lot easier.