An awareness of dementia is important when working with older people in hospitals. Why?

Hospitals are foreign places to most people with dementia. Unfamiliar routines, people and environments often increase the confusion level of patients with dementia and, in turn, trigger changes in behaviour and emotions.

It is important to acknowledge and integrate a diagnosis of dementia into care planning, as dementia impacts on all aspects of care, treatment and planning a patient will experience in hospital.

Delivering patient care is a complex undertaking, further complicated by the multifaceted nature of dementia. It is inevitable that, on occasions, schedules and expectations will not be met and patients will misinterpret efficiency for insensitivity. This often results in resentment or even anger. These patients are often labeled as 'difficult' by staff.

Engagement and involvement of carers of people with dementia is essential. Carers can play an invaluable role throughout the hospital stay. Drawing on their unique knowledge and experience in caring for the patient will assist hospital staff in the planning and delivery of care. When carers are informed about what to expect during an admission, and how they may work with the hospital staff, the quality of patient care will be improved.

What is dementia?

Dementia is a term used to describe a series of conditions that can affect a person's ability to think, remember, understand, make judgements, communicate and interact socially.

It is not normal for older people to develop memory or thinking difficulties. However, dementia is common and generally under recognised. An admission to hospital may be the first opportunity to initiate investigations that lead to a diagnosis.

The incidence of dementia increases with age:

• Any person can develop dementia, but it is more common after the age of 65 years.
• For females aged 65 - 69 years, dementia affects one person in 80, compared to one person in 60 for males.
• For both males and females aged 85 years and over, dementia affects approximately one person in four [42].
• At present, over 230,000 Australians are living with dementia, 25 per cent are from Victoria.
• Over 1,000 people are newly diagnosed with dementia each week.
• It is estimated that dementia will affect more than 730,000 people by 2050, unless there is a medical breakthrough [43].

Alzheimer's disease is the most common cause of dementia, and accounts for between 50 per cent and 70 per cent of all cases.

Dementia ranks as the fourth leading cause of death among the population aged 65 years and over.

Types of dementia

Dementia is a collection of symptoms resulting from many possible causes and disease processes.

Alzheimer's disease

The most common form of dementia. Accounting for 50-70 per cent of all cases, it is a physical condition that attacks the brain, resulting in impaired memory, thinking and behaviour. In the early stages, the symptoms of Alzheimer's disease can be subtle. However, it often begins with lapses in memory and difficulty in word finding for everyday objects.

Vascular Dementia

The second most common form of dementia. Vascular Dementia is a broad term for dementia associated with problems with circulation of blood to the brain.

Dementia with Lewy bodies

A common form of dementia, sharing many similarities with Alzheimer's disease and caused by the degeneration and death of nerve cells in the brain. The name comes from the presence of abnormal, spherical structures called Lewy bodies that develop inside the nerve cell.

Younger onset dementia

Sometimes called early onset dementia, it is used to describe any form of dementia diagnosed in people under the age of 65 years.

How is dementia diagnosed?

There is no definitive test for diagnosing dementia. Findings from a variety of sources and tests build a diagnosis. The process can be complex and time consuming. Sometimes a diagnosis is uncertain and may be conveyed as 'possible' or 'probable'. Despite this uncertainty, a diagnosis is accurate about 90 per cent of the time [44].

There are two key elements to diagnosis:

The Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) criteria for the diagnosis of dementia are accepted as the gold standard for this condition [45]. It is only when a patient meets the DSM-IV criteria that a formal diagnosis of dementia can be made.

Further reading

For further information on the DSM-IV criteria for dementia and diagnosing dementia:

Cognitive function assessment

Assessing cognitive function is a very important step in the diagnostic process for dementia. Tests are used to determine the extent of any memory or thinking problems and can be used to track their progression over time. Knowing the extent of cognitive impairment will also help the hospital care team modify the environment and care plan to best meet the needs of the patient.

Dementia screening tests can be quite brief and simple, such as giving the date, copying a diagram, learning a short list of words or naming common objects.

Commonly used brief assessments include the:

Some patients perform well on brief screening tests, but memory and thinking impairments may be found with more comprehensive testing. Some tests have been shown to have educational, social and cultural bias.

Brief screening tests can also be followed up by more detailed tests of function. Neuropsychological tests examine different areas of function, such as memory, language, reasoning, calculation and ability to concentrate. These tests are able to distinguish between different patterns of decline and are therefore important in helping to identify the individual's particular type of dementia.

Further information

For further information, refer to:

Differential diagnosis

In order to provide appropriate care to an older person, clinicians must be able to differentiate between changes in mental status due to dementia and those that may be due to an acute health condition.

A range of symptoms and behaviours are associated with different types of cognitive impairment. Some symptoms are similar across delirium, dementia and depression, therefore, an accurate diagnosis is important.

Refer to Differentiating the 3D's - Dementia, Delirium, and Depression for a comparison of characteristic features.

Further resources

For further information, tools, and educational resources on differential diagnosis refer to:

Who diagnoses dementia?

Without a diagnosis prior to admission, investigations may be commenced in hospital. However, it will take longer than the duration of an acute admission to come to any conclusions regarding a person's cognitive status. A referral to an appropriate service for follow-up post discharge is essential because there are benefits to early diagnosis.

Discharge correspondence with the General Practitioner (GP) is important when memory and thinking difficulties are identified during an admission. This may include results of dementia or delirium screening performed whilst an inpatient. The GP will provide ongoing primary care for the patient and will direct or coordinate the process of diagnosis and management.

Specialists such as neurologists, geriatricians, psycho-geriatricians, psychiatrists and neuro-psychologists have more detailed knowledge of memory and behaviour changes associated with dementia and may perform, or arrange, in-depth assessments. In Australia, a specialist must confirm the diagnosis of Alzheimer's disease in order for a patient to be eligible for subsidised Alzheimer's medications.

Medical investigations

When a patient is suspected of having dementia, the following pathology tests should be performed:

• Full blood examination, urea and electrolytes, liver function tests, thyroid function tests, vitamin B12, folate, calcium, random glucose.
• Additional tests may be required depending on clinical indications.

Imaging of the brain using Computerised Tomography (CT) scans or Magnetic Resonance Imaging (MRI) within 12 months of presentation of symptoms is a necessary part of making a diagnosis of dementia.

What can I do if I recognise that someone has dementia?

Determine if a formal diagnosis exists (check with family or carer, medical records and GP).

Assess the patient's cognitive function and perceptions of what is happening to them.

Refer for follow up and formal diagnosis as appropriate.

How should I respond to a patient who has dementia?

What are the care or management principles I should follow if someone has dementia?

Keys for effective communication

Introduce yourself. Make sure you have eye contact at all times.

Remain calm and talk in a matter-of-fact way.

Keep sentences short and simple.

Focus on one instruction at a time.

Give time for a response.

Repeat yourself - don't assume you have been understood.

Do not give too many choices.

Further information

Behavioural and Psychological Symptoms of Dementia (BPSD)

The early signs of dementia are very subtle, vague and may not be immediately obvious.

Common symptoms of dementia are:

• progressive and frequent memory loss
• confusion
• personality change
• apathy
• withdrawal
• loss of ability to do everyday tasks.

Dementia affects people differently. As well as the common symptoms already listed, a patient's behaviour can change. This can include wandering, pacing, agitation, depression, aggression and hallucinations. These are known as the Behavioural and Psychological Symptoms of Dementia (BPSD). Each patient diagnosed with dementia will have different symptoms, be affected differently and have different care needs.

For further information on BPSD, refer to the following sections:

• Why is unders tanding BPSD important?
• Assessment of BPSD
• Managing BPSD.

Why is understanding BPSD important?

Changes in behaviour are very common in patients with dementia admitted to hospital. These behaviours may impact on family, carers and hospital staff. The disease process can alter how the patient reacts to the hospital environment, whilst having a disinhibiting effect on their social behaviour.

BPSD affects patient behaviours and responses. Patients may be perceived to be difficult when their behaviour is actually a symptom of dementia. BPSD can impact on many areas of care and, in order to provide optimal care in hospital, dementia must be identified and considered in planning and delivering care.

Importantly, BPSD are recognisable, understandable and treatable. The recognition and appropriate management of BPSD are vital factors in improving care for people with dementia.

Caring for a patient with BPSD can affect staff and cause stress. Conversely, staff management practices and responses can influence patients with BPSD. The way hospital staff respond to a patient with dementia can greatly improve or worsen the situation. Responding appropriately can reduce the BPSD, while responding rigidly can exacerbate the behaviours [48].

The attitude and manner of hospital staff is extremely important, as patients with dementia are very sensitive to non-verbal cues and mirror the affective behaviour of those around them. A patient, calm and gentle manner has a positive effect. It is important to be aware that your body language may contradict the words you are using.

If not effectively treated, BPSD can contribute to:

Worsening patient outcomes.

Functional decline of the patient.

Diminished quality of life for patient and their family or carers.

Premature residential placement [48].

Significant financial cost (constant patient observation costs and increased length of stay).

A perception by the patient and family of sub-standard hospital care and increased risk of complaints.

Substantial work-related stress and decreased job satisfaction for staff.

Assessment of BPSD

Close observation of patient symptoms can assist in determining which BPSD are present, and help identify triggers, antecedents or activating events.

Further information

For further information, tools and resources refer to the following:

What care or management principles should I follow if a patient's behaviour becomes unsettled?

Refer to the following sections on some commonly encountered BPSD and strategies for responding to these symptoms:

• Wandering
• Sundowning
• Anxiety or agitation
• Aggression (physical or verbal)
• Hallucinations or false ideas
• Disinhibited behaviour
• Pharmacological treatment options.

• It is unrealistic to assume that a patient with dementia will be capable of independently attending to their personal care needs within the unfamiliar hospital environment.

Wandering

Wandering behaviour is regarded by nurses, family and carers as one of the most troubling behavioural symptoms likely to cause stress to the caregiver [50]. There is no one type of wandering behaviour. It has different patterns and, therefore, creates different management issues and levels of risk [51]. Screening and measurement tools can assist in differentiating between different types of wandering and assist in developing an individualised person-centred intervention [51, 52].

Some strategies to try:

Keep objects that might encourage wandering out of sight (for example, coat or handbag).

Ensure a patient's room is convenient for observation and is away from stairs or elevators, or located so the patient has to pass the nursing station to reach an exit.

Make sure all staff are alerted to the possibility of wandering.

Designate a safe place for the patient to wander.

Ensure the patient has identification intact at all times. Keep a description of what the patient is wearing on a daily basis and ensure a current photo is available.

Sundowning

Sundowning is restlessness, increasing confusion or changed behaviours in a patient with dementia that can occur late in the afternoon or early evening.

Some strategies to try:

Allow the patient to mobilise in a safe environment.

An afternoon rest, if fatigue is making sundowning worse.

Consider environmental factors (for example, is the lighting too dim or bright or are sounds too loud?).

Avoid activities in the late afternoon that may be unsettling (for example, showers, dressings).

Anxiety or agitation

Anxiety and agitation require an understanding of the reality the person with dementia is experiencing, and validating this may help settle the patient.

Some strategies to try:

• Talking about the anxiety-producing thoughts may help.
• Reassurance.
• Identifying, and relieving, the cause of the anxiety, where possible.

Aggression (physical or verbal)

Consider possible causes of aggressive behaviour:

• Fatigue.
• Over-stimulating environment.
• Asking the patient too many questions at one time.
• Too many strangers in a noisy crowded atmosphere.
• Asking the patient to perform tasks beyond their abilities.
• Failure at simple tasks.
• Encounters with irritable staff.

Some strategies to try:

• Identify and address the triggers and underlying emotion or feelings if possible.
• Simplify the task and communication.
• Ask a 'why?' question to get to the reasons for repetitive questioning and reduce its occurrence.
• If an explanation doesn't help, a distraction or some type of activity may diffuse the situation.
• Remain calm and use a low tone of voice.
• State things in positive terms, the constant use of 'no' or use of commands increases resistance.
• Refrain from forcing or restraining a patient.

Hallucinations or false ideas

Hallucinations are often present in later stages of dementia and can often cause great distress.

Seeing or hearing things that are not there is often frightening. Voices or sounds may be heard, or people or objects are seen and these can cause severe reactions. Hallucinations of false ideas can cause extreme anxiety and agitation.

Some strategies to try:

Don't argue and don't take any accusations personally.

Maintain a familiar environment, with consistent staff and routine, as much as possible.

Ignore some hallucinations or false ideas if they are harmless and aren't causing agitation.

Avoid triggers.

Disinhibited behaviour

Disinhibited behaviours may occur because a patient has forgotten where they are, how to dress or the importance of being dressed. It is important to understand why a patient may be behaving in this way so that triggers can be avoided where possible.

Some frequent causes include:

• Confusing the identity of another person.
• Discomfort (too hot or cold, clothes too tight or itchy).
• Loss of memory or disorientation (forgetting where the bathroom is and how to use it, confusing the time of day and what they should be doing).

Some strategies to try:

• Respond with patience and in a gentle, matter of fact manner.
• Don't over-react; remember it is part of the condition.
• Reassure and comfort the person who may be anxious.
• Gently remind the patient that the behaviour may be inappropriate.
• Lead them gently to a private place.
• Provide clothing that is more comfortable.
• Distract the patient by providing something else to do.

Pharmacological treatment options

Pharmacological treatment should always be used in conjunction with a consistent, non-pharmacological management plan.

Due to the potential side effects, the introduction of pharmacological treatment of BPSD should be avoided where possible. If a patient is medicated it is recommended that a geriatrician or specialist be involved. Using the expertise of a pharmacist as part of the care team is also advisable. Ideally, medications should be administered orally, in low doses and monitored and adjusted accordingly.

Further resources

For further information, tools and resources refer to:

What needs to be considered when planning discharge for a person with dementia?

For people with dementia, early discharge planning is of particular importance as their needs are complex.

Discharge planning needs to start soon after admission in order to prevent lengthy stays that may result in diminished independence and early admission to residential care. Discharge planning extends beyond the hospital environment and makes optimal use of GPs, other health care providers or social services. It involves arrangements for medical follow-up of acute illness and other care and support services.

Case study

Scenario 1

Mrs Wright visited the day after his surgery and found her husband sitting in the chair with his clothes over his pyjamas, looking like he was ready to come home. When questioned, the nurse explained that Mr Wright had put his clothes on himself and that they had left him like that. Mrs Wright felt that he should have had the clothes taken off and been kept in his pyjamas so he would better identify he was to stay in bed. As he was now disorientated and agitated, Mrs Wright felt that she would have to stay in the ward all day to watch him. Mrs Wright was worried that the nurses were not concerned about her husband's state of mind.

During the course of the day, a nurse asked Mr Wright to drink a lot of water as it would be good for him but didn't stay and offer any help or supervision, confirming for Mrs Wright that she really would have to stay all day. Mrs Wright knew there was no way her husband could follow the instructions from the nurse or remember what he had been asked to do. Mr Wright would need assistance and direction to drink the water. A little later the nurse returned and asked Mr Wright to use the urinal bottle rather than the toilet. This was another request he would not be able to remember. Mrs Wright made sure than when her husband went to the toilet she followed him to remind him to use the bottle.

Later that evening, Mrs Wright found her husband's tablets in his pocket, indicating the nurse hadn't watched him take them before she had left the room. During the course of the day, Mrs Wright had to leave the ward every two hours due to parking restrictions. Each time she left the ward, she made a point of asking the nurse to watch Mr Wright while she went out so that he did not follow her. Mrs Wright knew that he was normally only a step behind her and in his current agitated state he was even more 'clingy'. When her son and grandson visited later in the evening Mrs Wright took the opportunity to leave and go home for a while knowing that her husband had company.

About 7.30pm, her son rang to tell her he had noticed Mr Wright was not wearing an identification band and he was concerned that if he wandered off he could not be identified. Mrs Wright rang the ward and notified the staff, who said they would put a new band on straight away. Alarmingly when the nurse went to Mr Wright's room to replace the identification band he was not there. At 9.00pm, Mrs Wright received a phone call from a nurse on her husband's ward informing her that he was missing. Staff were looking for him and the police had been notified. The nurse asked if Mr Wright had arrived at home, which was about four kilometres from the hospital. Mrs Wright rang her son to tell him that his dad was missing, 'I know he replied, 'He is here at my house'. Mr Wright had walked about three kilometres, crossed a bridge over a river and walked over numerous hills to get to his son's home.

The hospital was very apologetic. Mrs Wright told them that she did not think the hospital was equipped to look after patients with dementia and that from the beginning of the hospital stay, things had not gone well. Mrs Wright informed hospital staff that her husband needed to be in a room close to the nurses' desk so that if he wandered he would be noticed. Mrs Wright also reported her concerns in relation to her husband's toileting, fluid intake and medication administration. Mrs Wright felt strongly that staff needed to learn more about how to effectively care for patients with dementia in the hospital setting.

Scenario 2

Utilising the following strategies from The toolkit: The Cognitive Impairment Identifier (CII) is a bedside alert sign that shows all hospital staff that the patient has a cognitive impairment. Hospital staff are required to undertake an education program that includes the use of the CII sign and how to approach and assist the patient with cognitive impairment.

Use of the Information for carers of people with memory and thinking difficulties: A guide to coming to hospital brochure, designed for family or carers, is aimed at improving the hospital experience and quality of care received. This guide will support the family or carers in their caring role, which continues during the hospital admission. The guide outlines how family or carers can work in partnership with hospital staff to make the hospital experience as stress free as possible.

The Information about 'me' for planning care in hospital is designed to be completed by family or carers of people with memory or thinking difficulties who at times may not be able to communicate their needs and problems. It will assist hospital staff with planning individualised care for the patient.

The book Understanding dementia: A guide for hospital staff is designed to be a quick reference for staff caring for patients with dementia. It has three parts:

1. Understanding dementia
2. Responding appropriately to the patient with dementia
3. Behavioural and psychological symptoms of dementia.

Mrs Wright's husband was admitted to hospital for a minor surgical procedure. On admission Mrs Wright mentioned that he had Alzheimer's disease. Mrs Wright asked the nurse to highlight this in the admission notes.

Now that Mrs Wright had highlighted her husband had been diagnosed with dementia, the nurse provided Mrs Wright with a Dementia care in hospital support pack. This included the Information for carers of people with memory and thinking difficulties: A guide to coming to hospital brochure and Information about 'me' for planning care in hospital form for use in planning Mr Wright's hospital care. The nurse asked Mrs Wright if she could fill out the form so hospital staff would have an idea of what is usual behaviour for her husband and how he manages activities of daily living in relation to his Alzheimer's disease.

The completed form showed that Mr Wright was only ever a few steps behind his wife during the day, 'shadowing' her and that he generally could perform activities of daily living himself with instruction and supervision, for example, taking medications and dressing himself. From this information the nurse was then aware that if Mr Wright was not observed closely he may wander. The nurse was also mindful that Mr Wright had to be reminded and assisted to eat and drink and directed and assisted with toileting. The nurse allocated Mr Wright to a room close to the nurses' station to ensure close observation at all times. If Mr Wright attempted to leave the ward he would be seen by staff at the desk. The nurse asked Mrs Wright for a recent photo of her husband, checked his identification band regularly to ensure he had not removed it and documented what Mr Wright was wearing on each shift, so that he could be easily identified if found wandering in the hospital area.

Mrs Wright observed the care the nurse had given her husband and felt confident leaving him in the care of the hospital and would not have to worry about his wellbeing and safety. Mr Wright had his minor surgical procedure and was discharged home with his wife the next day. A week later Mrs Wright sent a letter to the surgical ward to thank them for her peace of mind when leaving her husband at the hospital and providing she and her family with the Information for carers of people with memory and thinking difficulties: A guide to coming to hospital brochure which outlined what they should expect in relation to Mr Wright's care while in hospital. She was also impressed that an assessment had taken place prior to discharge, which had addressed both her and her husband's need for assistance and services when he went home from hospital.

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