The private world of incontinence

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.

In June 2013 I wrote a blog entitled ‘An urgent need to understand’, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:

“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.” 

Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.

Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked World Continence Week, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.

Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. 

The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.

It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).

Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear to her for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).

Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. 

I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.

Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. 

Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.

I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:

“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”

Until next time...

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Caught on camera

CQC’s launch of their document ‘A fresh start for the regulation and inspection of adult social care’ has created a barrage of debate. Amongst the raft of changes and proposals to overhaul the inspection and regulation of care services for adults are some ideas that CQC want to discuss with the public, including the “Potential use of mystery shoppers and hidden cameras to monitor care”. Concerns have been raised about whether hidden cameras are ethical, if their use would be legal, and whether we even need them.

To begin to illustrate my views, I want to pose a scenario to you:

A man of 84 is living in a care home. He has advanced dementia, and requires all of his needs to be met by a skilled team of care professionals, assisted by his family. His family are not present 24 hours a day, so much of his care is provided by different care professionals. His family become concerned for his welfare when the ownership, management and staffing of the home changes . The home is frequently short-staffed and running on agency staff (who don’t even know who each resident is). The man becomes more frail, has more infections, begins to develop pressure sores and is being kept in bed more than normal. This is also true of other residents. The few remaining regular staff, including the man’s keyworker, express concerns about the way that they are being instructed to care for the man and how new staff are caring for him. The man is eventually admitted to hospital with pneumonia after aspirating on his own vomit five times. The hospital are so concerned about the condition of the man that they make him the subject of a safeguarding order. He never fully recovers from the pneumonia and passes away four weeks later, less than two weeks after his 85th birthday.

That man was my dad.

I repeatedly raised concerns about my father’s care with the care provider after the changes in ownership, management and staff. Eventually I had to resort to phoning CQC three times before they would take my complaint seriously. They inspected, but then took two months to produce a report. It was too late for my dad. His keyworker, a wonderful care professional who had diligently looked after my father for eight years, was as heartbroken by the way in which the care deteriorated as we were. Indeed that care professional, and his colleagues who had  assisted with looking after my dad for many years, found alternative employment and left the home: they simply could not stand to deliver care in the way that the management wanted it delivered.

On the night my father aspirated on his own vomit, we believe he was put to bed too early and given a milky drink in bed without being properly upright – all of those actions going directly against our wishes and the recommended advice for his care from doctors (the management made their own care plans without our consent). The doctors treating my father at the hospital didn’t believe he would pull through the night – aspirating on your own vomit is a bit like pouring acid into your lungs they said. Imagine how that felt.

We will never really know what happened that night, because despite asking the staff on duty, no one could explain. I dearly wish we had had a hidden camera in my father’s room that night, and indeed in the months leading up to that fatal incident. I know it would have proven the poor care my father was subjected to, and it would also have proven some of the good care people like his keyworker provided, often fighting against the management to do what was best for my dad.

Do I think cameras should be routinely installed into care homes? No I don’t. But potentially they do have a value in certain specific circumstances when there are grave concerns for a person’s welfare that only indisputable footage can prove. Currently surveillance is limited to the few families who have installed hidden cameras to prove that their relative is being abused, or places like Winterbourne View that needed Panorama cameras to expose the appalling treatment being meted out.

It must be remembered that some people don’t have a family to monitor their care. People with dementia, learning disabilities and other conditions cannot always articulate what is happening to them. Proving how injuries are sustained can sometimes be one person’s word against another’s. Poor care many only really come to light following a crisis point when a person is admitted to hospital in a condition that no amount of treatment can cure, or it many only become evident on investigation after death.

I want to pose another scenario to you:

A lady living with dementia in a care home, almost completely deaf and blind, begins to lose a dramatic amount of weight and is always thirsty when her family visit. The family suspect she isn’t being fed enough. They often find drinks that have been left out of her reach, and suspect that staff aren’t communicating with her appropriately. She eventually passes away at a weight that would be considered severely malnourished.

I knew this lady, and her family agonised over what happened to her – a camera would have given them answers, and potentially ensured she received better care.

Dignity, privacy and respect are all vital in any care setting, but there is nothing dignified or respectful about elder abuse or premature death from negligence that hides behind a veil of privacy. Such practices – that are in the minority - must be rooted out: they taint the vast majority of wonderful care that is being provided. A hidden camera can prove or disprove allegations and suspicions, and it could potentially work in many different ways. For example: It can prove that a care worker is acting inappropriately. It can prove when a provider is negligent in not giving their staff the equipment or training needed to perform a task or to keep a person safe. It can assist a care provider to root out poor practice that they suspect an individual employee of but need to prove. It can show if a person receiving care has had a harmless accident or is self-harming. It can provide evidence if a family are being abusive, either towards their own relative or towards staff (yes, it does happen).

Cameras could also be helpful in certain specific circumstances in people’s own homes, where they are receiving home care or care from a family member, friend or neighbour.

Consider this scenario:

Two elderly sisters live alone at home. A neighbour ‘befriends’ them. That neighbour manages to persuade them to sign a Power of Attorney and then gets control of all of their money. She tells them that they are now so poor they cannot afford heating. Professional carers often come in to find these ladies cold and hungry. One of the sisters develops hyperthermia. Eventually they end up in care, virtually penniless.

I knew these ladies – could a camera have helped them, and brought the person who prayed on them to justice?

Clearly there are huge ethical, moral and legal issues with the use of cameras in any setting, particularly if those cameras are hidden. Whether a policy allowing the use of hidden cameras in adult social care will ever be created and implemented isn’t yet decided – this is merely an idea that has been put into the public domain for debate. Personally I welcome healthy discussion on any proposal that could help to safeguard our most vulnerable people and stamp out elder abuse. I don’t believe sensitive use of such cameras in a minority of isolated cases would undermine the morale of social care professionals. In my mind, those who are providing good care have nothing to fear.

Until next time...

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