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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