Managing dementia

There are strategies we can use to improve care for patients with dementia. These can include working with family and carers, staff and other health professionals, as well as adapting the environment.^1,2,3

Involve family and carers

• By involving family and carers in assessment, care planning and in delivering care we can improve outcomes for people with dementia, provide comfort, and also help family and carers understand and cope.
• Use the TOP 5 initiative to draw on their knowledge and experience of the patient and their care needs. Family and carers understand what is normal for the patient with dementia and this knowledge helps us identify changes that may be indicative of delirium, pain or other treatable conditions.
• Collect information from family and carers. Use forms such as the ‘This is me’, Information about ‘me’ for planning care in hospital. These forms include questions related to the patient’s social care needs and preferences, and behavioural management strategies (including mobility, toileting, medication administration, and what comforts or distresses the patient).
• Inform them about what to expect during an admission and how they can work with hospital staff.
• If possible, provide one contact person within the organisation for any queries.

I really got to know her and her husband. He had a lot of behaviours and caused a lot of problems on the ward. But I sat down with them both and did the Key to Me [a form similar to the ‘The information about me for planning care in hospital’] … I think that was really good. I’ve been nursing for a long, long time, and sometimes you forget …they’re not just a patient… It made me realise that he’s not a naughty patient who caused a ruckus on the ward. He was a very kind man. After that I had a lot more patience with him…he was wonderful remembering his past, he had the most amazing life… it blew me away.… You don’t get the same sense completing the form compared to when you talk to someone and fill it in with them.
- Enrolled nurse

Alert all staff

• Consider a method for informing all staff that a patient has dementia, for example a discreet bed-based sign such as the Cognitive impairment Identifier.
• Ensure that all staff are trained to respond appropriately to the needs of patients with dementia.

Communicate clearly and effectively

• Introduce yourself and explain your role.
• 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.
• Involve family and carers.

Assist with activities of daily living

• Assist the patient with toileting, eating and drinking; encourage regular movement, prompt with self-care and other activities of daily living where required. These interventions play a key role in minimising the person’s risk of under-nutrition, falls, pressure injuries and delirium.

Change the environment

• Place familiar personal belongings around the patient and, where possible, follow familiar routines.
• Have large faced clocks and calendars and clear signage to the toilet to assist the patient with orientation. If not available on your ward, talk to your team about purchasing them.
• Normalise the surroundings and reduce environmental stimuli as much as possible.
• Keep walkways clear to prevent falls.

Consider referrals

• Access the expertise of comprehensive geriatric medical services or on-site geriatricians or psychogeriatricians, or in emergency departments, dedicated aged care staff.
• Where appropriate, consider alternatives to hospital admission, for example, hospital in the home or return to their residential aged care facility with Residential In-reach services.
• It’s important that the person living with dementia, as well as their family and carers, maintains their social networks. Explain how this can reduce the risk of becoming socially isolated or experiencing loneliness, both of which can have a negative impact on a persons’ health. Local councils, local newspapers, neighbourhood houses and libraries can be a good place to find out what activities exist in each neighbourhood. Alzheimer’s Australia can help with information about local activities and groups. Ask a social worker for ideas.

Managing behavioural and psychological symptoms of dementia

We can use a range of strategies to help manage behavioural and psychological symptoms of dementia (BPSD).

Non-pharmacological strategies are the first line of action and require us to identify and address internal stressors, such as illness or care needs, and external stressors, such as noise and glare.

Family and carers should be included in the development and implementation of the care plan.

The following strategies may assist you develop a person centred intervention plan when these symptoms arise.^1,2,5

Reassure and reduce triggers

• Actively listen to, respond and reassure the patient.
• Be aware that patients with dementia are very sensitive to non-verbal cues and mirror the affective behaviour of those around them; a calm and gentle manner has a positive effect.⁶
• Identify and reduce triggers for BPSD.
• Avoid surrounding the patient with too many staff at one time, minimise multiple assessments and provide the same staff.
• Provide activities to reduce agitation and quiet areas where the patient with dementia can retreat to in order to avoid the over stimulating hospital environment. Be aware that these symptoms can be an expression of an unmet need such as pain or discomfort.⁷
• Use specialist support from services such as The Dementia Behaviour Management Advisory Service which provides a 24-hour telephone support service.

Wandering

Wandering is one of the most troubling behavioural symptoms reported by family and carers. There are different patterns of wandering behaviour and different management issues and levels of risk. Screening tools can help differentiate between different types of wandering and help develop an individualised person-centred intervention⁸. Some strategies to try include:

• keep objects that might encourage wandering out of sight (for example a coat or handbag)
• make sure the patient’s room is convenient for observation, is away from stairs or elevators, and is located so the patient has to pass the nursing station to reach an exit
• make sure all staff are alerted to the possibility of the patient wandering
• provide appropriate opportunities for exercise and activity. The family or carer, allied health assistants or trained volunteers can help (for example, take the patient for a walk within the hospital grounds at appropriate times)
• designate a safe place for the patient to mobilse
• 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.
• check the patient regularly
• consider using a bed or chair alarm.

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 include:

• use early evening routines that are familiar for the patient; ask their family or carer
• find out what activities or strategies calm the patient (for example, warm milk, back rubs, calming music). The This is me, Information about ‘me’ for planning care in hospital, Top 5 or equivalent form completed by or with a family or carer can provide this information.
• allow the patient to mobilise in a safe environment
• encourage an afternoon rest, if fatigue is making sundowning worse
• consider environmental factors, such as lighting and noise
• avoid activities in the late afternoon that may be unsettling (for example, showers, dressings).

Anxiety or agitation

It is important tounderstand the reality the person with dementia is experiencing and validating this may help settle the patient. Some strategies to try include:

• talk about the anxiety-producing thoughts
• reassure the patient
• identify and relieve the cause of the anxiety.

Aggression

Physical or verbal aggression can be triggered by issues such as fatigue, an over-stimulating environment, asking the patient too many questions at one time, asking the patient to perform tasks beyond their abilities, too many strangers in a noisy, crowded atmosphere, failure at simple tasks or confrontation with hospital staff. Some strategies to try include:

• identify and address the triggers and underlying emotion or feelings
• simplify the task and communication
• ask a ‘why?’ question to understand and reduce repetitive questioning
• if an explanation doesn’t help, a distraction or activity may diffuse the situation
• remain calm and use a low tone of voice
• state things in positive terms – constantly saying ‘no’; or using commands increases resistance
• don’t force or restrain the patient.

Hallucinations or false ideas

These can be present in later stages of dementia. The person may hear voices or sounds or see people or objects. This can cause severe reactions such as fear, distress, anxiety and agitation. Strategies include:

• 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
• pharmacological treatment may be part of a coordinated response for some patients who may benefit from treatment with antipsychotics (see below).

Disinhibited behaviour

By understanding why a patient is behaving in this way (for example due to memory loss, disorientation or discomfort), we can help avoid triggers. A patient may have forgotten where they are, how to dress, the importance of being dressed, where the bathroom is and how to use it; they may have confused the identity of a person; they may be feeling too hot or cold or their clothes may be too tight or itchy; or are confused about the time of day and what they should be doing. Some strategies to try include:

• respond with patience and in a gentle, matter-of-act 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

Psychotropic drugs can play an important but limited role in managing BPSD; there are modest benefits and significant potential adverse events⁵. They should be avoided where possible and used only if there is a risk of self-harm or harm to others, and only after a thorough examination has eliminated other possible causes (for example pain or illness) and where behavioural and psychological interventions were proven inadequate^1,5.

Pharmacological treatment will not assist with some behaviours, such as wandering or repetitive questioning⁹.

Work closely with doctors to monitor medication effects. Refer to a geriatrician or specialist and pharmacist as part of the care team.

Be aware that:

• medications should be administered orally, in low doses and for a limited time
• usage should be monitored (for effectiveness and side effects) and adjusted accordingly; medication should be ceased if not effective or if side effects are evident
• multiple psychotropic medication are not recommended.

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

Dementia and discharge planning

We can help patients, their family and carers, and their healthcare professionals provide appropriate care in the person’s home or care facility.

Inform their GP

If we suspect that a patient may be suffering from dementia, we must communicate this to the patient’s GP who will provide ongoing primary care and coordinate diagnosis and management. Provide the GP with results of cognitive and other screening and tests performed during the person’s admission.

Other referrals

Consider referring the person to other relevant services.

Memory clinics are known as cognitive dementia and memory services (CDAMS) in Victoria. These clinics incorporate a range of specialists (such as neurologists, geriatricians, psycho-geriatricians, psychiatrists and neuro-psychologists) involved in diagnosing dementia and provide diagnostic services for all types of dementia. They 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 for a patient to be eligible for subsidised Alzheimer’s medications.

Aged care assessment services (ACAS) comprise multidisciplinary professionals who conduct comprehensive, medical assessments for older people needing community services or aged care residential services. They help identify the type of care that best meets the needs of older people and their family and carers, put them in contact with relevant services, make recommendations about the level of care required and approve eligibility for certain services and packages.

Dementia Australia provides information and support for people and carers with dementia. Their national dementia helpline is 1800 100 500.

Meaningful activities enhance opportunities for social connection and participation. Encourage the older person and their family or carers to make contact with their local library, council or neighbourhood house, or check their local newspaper, to determine what activities might be available in their area.

Discharge summary

Provide patients, family and carers with a written discharge summary, including dates and contact details for any follow-up required.