Category Archives: care

My recent experience of acute hospital care for a person with dementia. It’s all in the implementation.


My mum’s emergency acute admission to a local busy NHS teaching hospital here in North London was in many ways ‘the best of times and the worst of times’.


There was a lot to be cheerful about. Many of the registered state nurses and health care assistants were teaching each other in front of my eyes about dementia care, in a way I had not expected. You see, my mother has been recently diagnosed with mixed Alzheimer’s and vascular dementias, and, as her only son who lives with her, we have both found the actual experience rather tough going at many times.


Nobody gives you a manual on how ‘to care’. You always feel you are not doing a good enough job, even if you are actually working at full throttle. You don’t often perceive of yourself as a carer, essentially doing a full time job, as you fell insidiously into the role.


I am on the GMC medical register, with a license to practise, so it was hurtful to see a Consultant essentially examining my mother in the Acute Treatment Area treating her like a slab of meat. My mother was clearly uncomfortable lying flat on the trolley, and, when I asked why the Doctor had not introduced herself, she said her name and that she was a Consultant.


I also found it hurtful that many healthcare professionals seem to judge me personally on my ataxic gait, dressed casually, jumping to conclusions over my perceivied lack of intelligence. One health care assistant aggressively accused of me being ‘drunk’, when in fact I have not had an alcoholic drink for over ten years being in recovery.


When my mum was on the acute medical assessment, it was the pits. There was a constant stream of different people, never introducing themselves (despite the #hellomynameis campaign), mum being taken to investigations without any warning, mum being expected to give information when all she could reply was, ‘ask my son’.


When I dared to explain I was entitled to visit my mother outside traditional visiting hours, another nurse pointed to a poster on the wall describing ‘John’s Campaign’. There’s no doubt for me that the campaign has been a roaring success with the ostensible backing of the great and the good, including the media, but it was disappointing to see a few nurses pointing at posters to demonstrate to me their actual understanding of the need for the campaign.


The dementia-friendy ward where my mum was transferred to was brilliant. The signage was excellent, though I did notice that the ‘dementia friendly clock’ was showing the wrong day one day which even I found disorientating. One HCA taught a nurse to give a massage rather than bleep the oncall for an anxiolytic.


And indeed the ward were very prompt at getting my mum sitting upright in her chair, with an inflating cushion, instead of lying all day in bed. The senior nurses had a very good understanding too of the spirit of #endpjparalysis, which I was very happy to see, and even provided a clear discussion of the potential problems in the campaign’s implementation.


But for all the incredible work of the staff on that hospital, system failures continue to undermine the patient and carer experience. I felt the social worker was the most impressive professional I have personally met in my lifetime, and indeed Wayne from transport was an incredibly nice guy.


We did end up waiting for transport for five hours and in the end mum and I left in fact at 11.30 pm after my mum had become quite agitated. But this is nothing to do with the hospital, but all to do with wider politics nationally.



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What happens in hospital for a person with dementia has important consequences

What happens in hospital is a highly personal affair. Whether a hospital admission goes well or poorly can have a deep psychological impact on all involved, sometimes even for many years.

But fundamentally I don’t feel you have to be an ‘expert’ to deliver high quality acute hospital care – in fact, the word expert is best reserved for a person with dementia knowing about his/her dementia in his own particular time and place. But clinical specialists are also worth their weight in gold.

The Royal Free Hospital Hampstead ran the SHINE project successfully a few days ago, funded by the Health Foundation. A focus was ensuring people with a diagnosis with dementia weren’t stuck in hospital excessively, and could go home wherever possible.

I feel that, in the same way that a diagnosis of dementia is never as such given to one person in isolation, the experience of a hospital admission is fundamentally about how well everyone is treated. This includes, vitally, those closest to a person with dementia.

Dementia comes in all shapes and sizes, and no two people with dementia are the same. A person with dementia might be experiencing profound visual object processing issues and nothing else, or a person with dementia might have profound personality changes, observed by somebody, and nothing else of note.

But the most common type of dementia worldwide in all age groups is the dementia of Alzheimer type, and the most common problem early on is in learning and short term memory.

I will call the person closest to the patient with dementia the ‘carer’ for shorthand – but this is not an ideal word, quite often, for the son, daughter, husband or wife, even though the person does not seem himself or herself in a formal caring rôle. Going to hospital can be intimidating and frightening for all involved.

The way in which dementia care is delivered really is the critical issue. This impacts not only whether the aims of an admission are delivered, but also how the patient and those closest to them experience that hospital admission.

Dotting the ‘i’s and crossing the ‘t’s of the hospital admission also has a huge bearing on whether a patient with dementia will ‘boomerang’ back into hospital. A “repeated admission” and “failed discharge” can be two sides of the same coin.

Many people have high levels of patient contact and low levels of training opportunity (domestic staff, nursing assistants and ward clerks). Educating them about the essentials of what living with dementia are can be extremely useful to improving the overall experience of dementia care.

Changing working practices of people in the acute hospital to include patients and carers, I reckon, is essential. It’s all about the patient – and services should not be organised around the convenience of the doctors and the hospital.

This necessarily involves paying attention to detail. It’s easy to think immediately of a few examples.

  • Making sure that the patient is always oriented in time and place even in a pretty boring hospital bay. A patient always has some way of checking what investigations are forthcoming will decrease the stress when the porter suddenly arrives to collect the patient for the investigation.
  • Carers not being lectured to if they visit outside visiting hours, even by a margin of minutes, will get rid of the ‘them against us’ phenomenon which can ruin the hospital experience for all.
  • Allowing carers to stay with patients for long as possible can alleviate the distress for both parties which can result from being away from each other.
  • Patients with dementia not given their food miles away from where they’re sitting will massively help due to the marked attentional problems which can occur in dementia.
  • Doctors and all staff introducing themselves properly with their name, and a brief description of their rôle.
  • Also, in delivering person-centred care, particularly for someone who might be disoriented (delirium often accompanies the experience of someone with dementia with an acute illness), it is helpful not to have such a rapid turnover of staff.

This video describes the “CAPER anchors” running at the Royal Free. I find the method really helpful, and in summary, CAPER describes a systematic approach as follows.



C collateral

Get the right information from the right people. I think there is a psychological mindset often from clinicians that carers are an obstacle to providing care, which is more than organising investigations and following them up at some stage.

Carers, like the person with dementia, instead are a huge source of information, not least about the symptoms of the acute illness, but also about the social situation.

In a recent acute admission, the hospital staff did not realise for ten days that I lived with my mother – they thought she lived alone. Nobody ever asked me.

This was highly detrimental to the understanding of my mother from a physiotherapy or occupational point of view, and delayed slightly mobilising plans for her discharge.

A assessment

This must be meaningful and strengths based assessment including the skills are meaningful to someone’s life.

In living with dementia, it is much more important to identify what a person can do to maximise his potential for independent living (and to minimise dependence on care).

Such an approach can drive coming up with solutions intead of problems.

P partnership

It is essential that everyone is involved – including patients, friends, family members.

The official guidance from the RCN and Carers Trust indeed advocate the use of personalised care plans incorporating information from everyone.

I cannot see any other way of approaching this.

E enablement

The aim should be to maximise functional independence, and this might be something simple to make sure somebody doesn’t leave hospital with an unmanageable prescription list. Having too many medicines can make taking them accurately difficult.

Above all, I saw first hand the need to prevent hospital related deterioration, even while  a patient is ‘getting better’.

This means not keeping a patient lying in bed excessively, where a person might develop pressure ulcers or even a deep vein thrombosis/pulmonary clot; or having a venflon/cannula in for longer than necessary thus providing an infection site.

Engaging a person early on can encourage a sense of wellbeing in hospital ahead of hospital, and this might include something simple like walking and merely chatting with the patient while they’re in hospital.

Activities such as massage or introduction to pets can improve wellbeing for all, for example.

R. Role modelling

As Gandhi is reported to have said, “Be the change you want to see“. People indeed learn by example, and staff should be encouraged to pass on tips and advice to colleagues about what worked well (and what didn’t).

Essentially, no one size fits all.

I feel we’re some way of where we should be. But at least we now know where we’re hoping to go to?

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Babette's feast – and learning to care

For some time, Kate Swaffer had been suggesting to me that I should watch one of her favourite films ‘Babette’s Feast’.

In case you were unaware, one of Kate’s remarkable talents is high-end cuisine. Kate even ran a restaurant. I went past it in a mini van while I visited Adelaide suburbs earlier this year.

In case you haven’t yet seen this extraordinary, remarkable film, I do not wish to do any spoilers. I do need to tell you some basic details though – it involves Babette producing a meal for twelve people, consisting of top quality courses. She barely has any help, but does it all to budget. There is no money left at the end of the evening.

If you are desperate to know the plot of the film, please refer to the synopsis here.


Health and social care often look to other sectors to look for best practice. For example, only this afternoon, Jeremy Hunt made reference to two hundred ‘avoidable deaths’ in the NHS every week; ‘the equivalent of an aeroplane’. Travelling by air, for example the use of checklists, has become a paradigm for patient safety.

I started watching ‘Babette’s Feast’ just after midnight this morning. It finished before 2 am. It is an amazing film. You’ll see why when you watch it.

But in passing I could not of course help but think about the parallels between preparing a complicated meal for guests with ‘dementia care’. I’ve always had problems with the term ‘dementia care’ as it can sound very robotic. I think it is a rather unemotional term for something at the heart of humanity – that is looking after someone.

Is it that ‘dementia care’ sounds transactional? I think this issue of carer versus care recipient is problematic if there is a problematic power imbalance.

Back to the dinner party.

It is no small achievement for Babette to provide a meal with a number of courses, such that all the dishes arrive on time. This is a big operational ask.

But it is highly significant that the dishes had personal resonance for the guests – often invoking memories. Such evocation of memories, further, could lead to a massive outpour of wellbeing.

The meals together can cause the guests to feel much more content, such that they enjoy each other’s companies – overall the group’s wellbeing is much enhanced.

Therefore, Babette’s feast is more than a set of dishes. It has personal resonance for the people involved – making it unique.

Babette neither profits or makes a loss on the meal (for reasons I don’t want to go into, otherwise it gives a key detail of the plot away.) The ‘outcome’ is that all the guests end up very happy.

In this current climate, it is all very easy to become enveloped in the ‘costs of caring’ and operationalising care. But this is of course to take away something very special which you can’t bottle.

Choice is heavily emphasised in English dementia policy. Thinking about it more, choice is an inevitable consideration when the discussion becomes preoccupied that accounting phenomenon known as ‘scarce resources’. It is a political drive which can lead to rationing.

On the other hand, how much would you value ‘mercy’ and ‘compassion’ at? It is easy to know the cost of many things, and the value of nothing; and this is particularly so in residential dementia care I feel.

This quote for me summarises for me much of a shift towards a much healthier way of thinking for all of us:


A brilliant film.

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