Provide Palliative Care

Treatment of pain for people with dementia requires consideration of reversible causes and often a combination of pharmacological and non-pharmacological approaches. Reversible causes could include:

• constipation
• ill-fitting aids or supports
• immobility
• metabolic abnormalities and infection. [9]

The Assess Palliative Care Needs section of the ELDAC Dementia Toolkit identifies tools that can be used for people able to respond to questions about pain or observational tools for those unable to respond.

The Dementia Centre from HammondCare provides a resource on pain management called Observe a Change Consider Pain: 5 steps to manage pain in people with dementia (542kb pdf). The steps include:

• Identify
• Assess
• Manage
• Re-Assess
• Monitor. [10]

Monitoring pain is important as the needs of the person with dementia may change. Frequency of monitoring varies from several times per day to weekly, depending on the individual's response. Monitoring includes self-reported outcomes when possible and observation of non-verbal communication, which may include:

• signs of distress
• sounds such as moaning
• facial expressions or gestures like grimacing or frowning
• changed behaviours
• sleeping more or less than usual
• protecting a specific body part or being reluctant to move
• eating less or refusing food. [11]

Pain management plans are reviewed based on outcomes, any changes, new diagnoses, investigations, during care planning or "person of the day" reviews.

Pharmacological management considers the effects of medications on the person, with awareness of side effects and risks, such as falls and constipation. The approach should be individual and flexible, with treatment modalities that are tailored to support the individual's capacity and needs. Use of appropriate prescribing for an older cognitively impaired population must be considered if pharmacological treatment is warranted. [12]

The Royal Australian College of General Practitioners (RACGP) Silver Book has a section on pain, including pharmacological management.

caring@home offers the palliMEDS app. It provides clinicians with prescription information for the most useful palliative care medicines in the management of terminal symptoms. The app also includes an opioid calculator tool.

Legal protection for providing pain relief

Sometimes there are concerns among health professionals about the legality of providing pain relief medication when a person is close to death.

It is lawful to give pain and symptom relief in accordance with good medical practice.This applies if the health professional’s intention is to reduce or relieve a person’s pain and symptoms, and not to hasten their death. This is the case even if the health professional knows death may be hastened by providing the medication.

This legal protection is known as the doctrine of double effect. The ELDAC End of Life Law Toolkit has a video and a factsheet Legal Protection for Administering Pain and Symptom Relief with further information.

Non-pharmacological interventions for treating pain may benefit the person living with dementia. These may include:

There is a relationship between nutrition and diet, and cognitive function in people with dementia. [13] Memory loss, communication decline, sensory and neurological impairments can significantly impact food-related behaviours. [14] This can lead to challenges in meal preparation, eating, and overall nutrition. Additionally, changed behaviour, limited attention span, increased movement, and apathy may further complicate the ability to maintain adequate food intake. [14]

Unintentional weight loss due to loss of appetite, poor food intake, pain, and acute gastrointestinal symptoms may be indicators of malnutrition. Referral to a Dietitian or Speech Pathologist may be required. The ELDAC Allied Health Toolkit has information on how these allied health professionals can assist with nutrition, hydration and swallowing.

The Eating and Drinking with Acknowledged Risk (EDAR) framework described in the Assess Palliative Care Needs section of the ELDAC Dementia Toolkit can assist in maintaining nutrition and hydration as a person’s dementia progresses. Engaging in 'dignity of risk' or EDAR discussions, along with standard therapeutic advice, allows the person or their substitute decision maker to make well-informed choices.

Nutrition and hydration can be supported through:

• Offering finger foods.
• Arranging the use of special cutlery, cups and plates to support independence.
• Ensure fluids are offered regularly and that the person’s fluid preferences are known and documented.
• Creating a relaxed, interactive mealtime that caters to the person’s known food preferences.
• Providing a 24-hour menu.
• Providing high energy, high protein, snacks that may supplement reduced intake during main meals. [15]

Practice Tips are available from palliAGED that may assist in supporting the nutrition and hydration of people with dementia.

• Nutrition and Hydration for Nurses (239kb pdf) and Careworkers.
• Dysphagia (difficulty swallowing) for Nurses (238kb pdf) and Careworkers (334kb pdf).

Dental care for people with dementia is important to their health and wellbeing. Signs of dental pain may include a loss of appetite, pulling at the face, refusing to brush teeth, restlessness, disturbed sleep, increased agitation or aggression. [16]

Oral Health challenges for people with dementia may include:

• Needing assistance with oral hygiene.
• Memory issues that may impact their ability to recall how to care for their teeth.
• Loss of interest in dental care or finding it tiring.
• Struggling to wear dentures, whether ill-fitting or loose; noting this can be a choking risk in late-stage dementia.
• Common problems such as tooth decay, dry mouth, and mouth pain from poorly fitting dentures or reduced saliva. [16]

Tips for supporting oral care in late dementia:

• Supported brushing, flossing, and rinsing of natural teeth.
• Daily cleaning, rinsing after meals, and using toothpaste or rinse.
• Maintain hydration and monitor sugar intake.
• Regular dental check-ups. Consider dental hospitals with staff specialising in dementia care. [16]

Resources that may assist in providing oral care for a person with late dementia:

• Dementia Australia outline practical ways to support dental care.
• palliAGED offer Practice Tips on oral care for Nurses and Careworkers.

Frailty involves reduced strength and energy impacting multiple systems in the body, which makes people more vulnerable to health issues and quick decline. Frailty is more than just physical weakness and can include cognitive and social issues. [17] Frailty and dementia are predictors of decline and shorter life expectancy. [17, 18]

The common clinical presentation of frailty includes falls, delirium and sudden immobility. Other signs and symptoms include weak muscles (sarcopenia) and prescription of five or more medications (polypharmacy). The person may also have visual/hearing impairment and a cognitive impairment. [18]

Approaches to manage frailty include:

• Taking measures to prevent, identify and effectively reduce deconditioning.
• Integrating appropriate exercise and nutrition, which can stabilise frailty.
• Reviewing medication.
• Focusing on a restorative care model to ensure there is effective recuperative rehabilitation available. [18, 19]

Psycho-social wellbeing is critical in providing palliative and involves a person-centred approach, understanding the individual’s experience, providing emotional and social support and engaging with their family and carers. [20] Considered and personalised opportunities for engagement and memory support for people living with dementia may include sensory stimulation, pet therapy, music, art therapy, and reminiscence. Sensory interventions can evoke memories, reduce agitation, provide stimulation, calm, and enhance mood, while providing meaningful engagement. [21]

People with dementia may show behaviours that are very different to how they usually are. These behaviours can have negative impacts on wellbeing, as well as family and carers.

Understanding the causes of behaviour changes can help with providing the care that is needed. The Dementia Support Australia resource Understanding changed behaviours provides practical guidance, including videos and help sheets for common behaviour changes. Practice Tips from palliAGED for Nurses and Careworkers are available on late dementia and behavioural changes.

Principles of managing changed behaviours relate to acknowledging and safeguarding the rights of the person with dementia. Support aims to enhance quality of life and ensure safety in the least restrictive setting possible. The actions of the individual with dementia are understood as a means of communication. The effects of changed behaviour on the person with dementia, their families and carers, clinicians, care workers and the community are recognised. Collaboration with everyone involved is the preferred method of support. [22]

In Residential Aged Care, a Behaviour Support Plan (BSP) is a legal requirement for anyone that has a changed behaviour. Dementia Support Australia (DSA) has resources to support the use of Behaviour Support Plans. These include plans for No Restrictive Practices or Restrictive Practices (135kb pdf).

Delirium is a state of severe confusion that can develop quickly within hours or days. Delirium is often triggered by factors such as:

• Acute illness
• Infection
• Pain
• Dehydration
• Constipation
• Medication side effects. [23]

It is crucial to assess the risk and identify the signs and symptoms of delirium early, which can fluctuate over time. These may relate to:

• Cognition: rambling, incoherent speech, lack of attention or focus.
• Perception: hallucinations and delusions.
• Physical function: lethargy and drowsiness, disruptions in normal sleeping, and eating patterns.
• Behaviour: restlessness, irritability, aggression, anxiety, mood changes. [23]

Dementia is a risk factor for developing delirium, so it is important to recognise the differences between delirium and dementia. [24] Delirium causes acute changes, while the onset of dementia is gradual. People with dementia are usually alert and have a slow decline in cognition and related symptoms.

Delirium is often under recognised in people living with dementia. Delirium superimposed on dementia (DSD) is the term used when delirium occurs in people with cognitive impairment or dementia. DSD is often difficult to recognise because the symptoms of delirium can be confused with or attributed to the dementia. [25]

To manage delirium, investigate the cause of delirium through taking a person’s history and conducting a full examination. Identify and modify risks and manage symptoms using a person-centred approach.

Consider these management strategies:

• Ensure the person’s space is familiar and quiet, and that the person can see a clock and calendar.
• Speak in a clear, calm and consistent manner, using simple language and short sentences. For example: 'You are in your room with me, [your name], and it’s Friday.'
• Provide reassurance if the person is worried, scared or restless.
• Repeat information as needed.
• Involve people who are familiar to the person with their care, such as family or regular staff members. [24]

CareSearch Clinical Evidence has more information on delirium.