Living with dementia: the hospital experience

Living with dementia or memory problems can make unfamiliar surroundings such as a hospital ward disorientating and frightening.

In this article, we explain what going into hospital may feel like for a person living with dementia. We also discuss ways to support those with dementia during their stay.

The early symptoms of dementia

Dementia is a term used to describe a series of symptoms that cause a decline in brain function and memory.

The early signs of dementia include:

• Short-term memory loss
• The ability to remember things that happened in the past more easily than things that have happened recently
• Difficulty keeping up with conversations, either in person or on the TV or radio
• Feeling confused and lost when in unfamiliar or familiar surroundings
• Struggling to carry out everyday tasks
• Finding it hard to think straight or reason with yourself or others
• Mood changes
• Feelings of anger, stress, depression or anxiety towards memory loss

Someone with mild early symptoms of dementia may be described as having mild cognitive impairment.

The different types of dementia

The most common form of dementia is Alzheimer’s disease. Vascular dementia is the next most common. It’s possible to have both Alzheimer’s disease and vascular dementia as they have different causes.

Both Alzheimer’s and vascular dementia cause problems with memory. Alzheimer’s tends to make people more confused, more likely to have trouble with words, numbers and planning and to become withdrawn.

Vascular dementia tends to affect movement, as well as causing problems with mood and being able to pay attention.

Other types of dementia include dementia with Lewy bodies and frontotemporal dementia.

If you’re concerned you have dementia or that a loved one may have the condition, it’s important to speak to your GP. Getting an early diagnosis will help you or your loved one get the right support for when when it’s needed the most.

Causes of dementia

Dementia is caused by certain proteins building up in the brain that can affect the way nerve cells work. Eventually, the nerve cells become so damaged that they die. Over the long term, this causes certain areas of the brain to decrease in size.

The reasons the proteins that trigger this damage start to build up is not yet fully understood.

Different proteins lead to different types of dementia. For example, proteins called amyloid and tau are responsible for Alzheimer’s disease. Amyloid proteins build up and form plaques that damage brain cells and tau proteins tend to tangle themselves up with the brain cells.

As these proteins cause damage, the brain cells are less able to communicate with each other. This means that memory and other cognitive tasks are impaired.

Developing vascular dementia is usually a result of the brain suffering a reduced blood flow. This starves the brain cells of oxygen and nutrients and eventually causes them to die.

Reduced blood flow to the brain can be due to blood vessels slowly narrowing over time, often because of smoking, high blood pressure or diabetes. It can also be caused by suffering a stroke or mini stroke, but experiencing either does not guarantee you will have vascular dementia.

Going into hospital if you are living with dementia

Living with dementia can mean you are more prone to injuries and illness. Therefore, people living with dementia tend to require more hospital treatments and stays in hospital than those without dementia.

Often, these hospital stays are for conditions that could be prevented and mostly affect the elderly. 75% of people living with dementia that need to stay in hospital are over 80 years old. Almost half of unplanned hospital admissions in people over 70 years old are dementia-related.

Since dementia often causes confusion and memory loss, it’s important that someone living with dementia who needs to go into hospital is supported. This is important whether the hospital visit is planned (e.g. elective surgery) or unplanned (the result of an accident or illness).

What a hospital stay feels like to someone living with dementia

Living with dementia can make someone feel scared, alone, confused and vulnerable in their own home or other familiar place. Going into hospital where the surroundings, sounds and people are new can make these feelings worse. If you have the early signs of dementia, you may feel fearful of going into hospital for these reasons.

A person living with dementia in hospital can feel disoriented, which can affect their mood. They can become disruptive and angry, cause a ‘fuss’ and even become aggressive.

This isn’t them being difficult, this is often brought on by fear and mistrust in new and unfamiliar people. Support from both medical staff and loved ones is crucial to provide comfort, understanding, care, a feeling of safety and a more positive experience.

Being in hospital doesn’t have to be a negative experience. The right personalised support, a calm, understanding and reassuring environment and support from medical staff and loved ones will help.

How medical staff can help

The press often reports on incidents where hospital staff haven’t recognised that a patient has dementia, or where they have inadequate dementia support. This means that the person living with dementia experiences poor support, neglect and an all-round negative experience of something that is already distressing.

There’s also the fear that someone living with dementia will leave hospital and be sent to a different residence such as a care home. This fear is confounded by the fact that 36% of people living with dementia do not return to their homes after non-elective hospital admissions and instead return to live somewhere else.

But this doesn’t mean that hospitals can’t be dementia-friendly places. The Butterfly Scheme was set up by a carer to help medical staff see dementia through the eyes of the person with the condition and their loved ones.

It’s a UK-wide scheme that aims to help all medical staff deliver appropriate care to someone staying in hospital living with dementia. When hospitals join the scheme, it means that staff caring for patients, at all levels, are trained in giving the right care and support.

Patients living with dementia at a Butterfly Scheme hospital have a small butterfly symbol on their hospital identification bracelet.

So far, nearly 200 hospitals have committed to the Butterfly Scheme. King Edward VII’s Hospital is one such hospital, playing a dedicated role in supporting people living with dementia.

Even in non-Butterfly Scheme hospitals, staff can, and should, still be trained in recognising the signs of dementia in order to provide personalised care. A named nurse can help to provide a continued flow of information between the hospital, the patient if they’re able, and their loved ones.

If necessary, friends and family can book a timed appointment with their loved one’s named nurse to discuss their treatment and aftercare plan.

How friends and families can help loved ones going into hospital

Families, partners and friends may feel helpless when a loved one living with dementia is admitted to hospital for elective surgery or for treatment for a fall or illness. But they can still play an important role in providing emotional and practical support.

Not all medical staff will instantly recognise the signs of dementia, so it’s helpful for loved ones to communicate with staff.

This doesn’t just mean telling staff that your loved one has or possibly has dementia. There are lots of other things you can do to help their stay in hospital be as positive as possible.

Here’s how you can help:

• Explain to medical staff how your loved one likes to be addressed – for example, either by their first name, a nickname or more formally by their surname, i.e. Mrs Collins.
• Tell medical staff how to best communicate with your loved one – for example, if slow, deliberate or loud speech is best.
• Other important notes about the person in hospital – such as their dietary preferences, cultural or religious beliefs, illnesses, medications, preferred activity levels and indications of pain and discomfort – can be recorded in the This is Me record card provided by Alzheimer’s Society.
• It’s also helpful to record your loved one’s likes, dislikes, names of pets, favourite TV programmes and authors, past career details and anything else that will help them to feel comfortable. Medical staff can then talk to them when you’re not present about the things that feel familiar.
• Label your loved one’s clothing and belongings in case they go astray.
• Leave small trinkets, photos and familiar objects by their bedside to create a sense of belonging and comfort.
• A notebook can also be helpful for your loved one or their medical team to leave notes for you.
• Be mindful of signs of pain or discomfort and discuss them with the relevant medical teams.
• If you can, and you’re able, try to visit during mealtimes which can be noisy and stressful.
• Let the medical teams know if your loved one needs help or reminders to eat.
• Reminisce and talk to your loved one about the things that spark memories when you visit. Bring photographs and other memory joggers to draw attention away from any fears. Kind words and a reassuring hand hold can help them relax.
• If your loved one is becoming agitated, it might help to record when this happens. If it’s during busy times, you may be able to request a quieter ward or somewhere else for them to sit.
• If you have concerns about your loved one’s care, talk to relevant staff away from their bedside.

More information

• If you’re concerned about dementia or you’re worried on behalf of a friend or relative, speak to your GP to understand your next steps. (Don’t have a GP?)
• If you would like more information on King Edward VII’s Hospital’s participation in The Butterfly Scheme, please email: enquiries@kingedwardvii.co.uk