Assess Palliative Care Needs

Pain is a common symptom in people with dementia and may be expressed verbally, through body language, emotional responses, behaviours, and physiological changes. [4] Controlling pain for a person in late dementia is a vital part of symptom management.

The Pain Management Guide (PMG): Toolkit for Aged Care (790kb pdf) recommends 4 steps to pain management (31kb pdf) in the context of dementia:

1. Pain identification
2. Pain assessment
3. Pain treatment
4. Pain evaluation and monitoring.

Pain Assessments

• The person is ABLE to answer questions
  If the person with dementia is able to answer questions or respond meaningfully to questions about pain, then a verbal pain assessment scale may be suitable. The Numeric Rating Scale (NRS) (30kb pdf) measures one aspect of pain: ‘how much pain do you have now’.
• The person is NOT ABLE to answer questions
  If the person with dementia is unable to answer questions or respond meaningfully to questions on pain, then use an Observational Behaviour Scale. These include:
  • The Abbey Pain Scale (43kb pdf) is an observational tool developed in Australia across the domains of vocalisation, facial expression, change in body language, behavioural change, physiological change and physical change.
  • The Pain Assessment IN Advanced Dementia Scale (PAINAD) (44kb pdf) is an observational tool across the domains of breathing, vocalisation, expression, body language and ease of comfort.

Distress in a person with dementia may be observed as a change in the usual behaviours or appearance. It is an unpleasant emotional or physical experience. [5]

If a person with dementia is distressed, it is often because they are trying to communicate something that they are unable to express. [5]

• The Distress Observation Tool (DOT) is used to identify, monitor and report the signs and symptoms of distress among people living with advanced dementia. The DOT is designed for use by family and carers, care workers and health professionals. The DOT is freely available after registering with The Advance Project^® to download the tool.
• The DOT can be completed daily or weekly and looks at four main aspects:
  • Behaviours you might observe in your caring role.
  • An overall distress scale, using the impact on the person’s normal behaviour as a guide.
  • A list of potential causes of distress that can help to focus on what you might do next.
  • The opportunity to start to think about what might help. [6]

A person living with dementia may change the way they feel and behave. These changed behaviours can range from being subtle to extreme, may come and go, or be ongoing. The person with dementia may feel, say and do things that are very out of character for them. [7]

Common changed behaviours experienced by people with dementia include:

Changed behaviours happen in over 90% of people living with dementia at some point and are often linked to poor outcomes. [8] There are many reasons why changed behaviours may be seen in people with dementia. Understanding the causes of behaviour changes can help with providing the care that is needed. The Dementia Support Australia (DTA) resource called Understanding Changed Behaviours provides practical guidance, including videos and help sheets for common behaviour changes.

Some behaviours may be responses to unmet needs. [8] This highlights why ongoing assessment is vital for people living with dementia. Dementia Training Australia (DTA) has resources for health professionals and care staff to assist in addressing changed behaviours when working with people with dementia. The resources include quick to use reference cards and lanyard checklists with recommended frameworks and assessments.

The Neuropsychiatric Inventory Questionnaire (NPI-Q) (127kb pdf) is a validated clinical tool for evaluating psychopathology in dementia. The NPI-Q can assess both the severity and the distress of a person experiencing 12 common neuropsychiatric symptoms, such as hallucinations, agitation, or apathy.

For specific behaviour assessments consider:

• The Geriatric Depression Scale (217kb pdf), which assesses depression in a person with or without cognitive impairment.
• The 4AT (273kb pdf), which is a validated screening tool and can used as an initial assessment to detect delirium and cognitive impairment.
• The Rating Anxiety in Dementia (RAID) scale (151kb pdf), which assesses recent anxiety symptoms and signs in people with dementia.

Cognitive tools can be used to identify initial cognitive function and can be repeated as required to gain a better understanding of a person’s cognitive abilities. Regardless of which cognitive tool is used for assessment, it is best practice to use the same tool over time for consistency and comparison. For example, if a person living with dementia was previously assessed using the MOCA, then the MOCA should be continued to be used for future assessments.

• The Montreal Cognitive Assessment (MOCA) is recognised globally as a validated and accurate test (682kb pdf) for early detection of mild cognitive impairment. Administration and scoring instructions (171kb pdf) are available and the MOCA has been translated into numerous languages.
• The Rowland Universal Dementia Assessment Scale (RUDAS) is a multicultural cognitive screening tool to assess baseline cognitive performance. It was designed to minimise the effects of cultural learning and language diversity on the assessment.
• The Kimberley Indigenous Cognitive Assessment Tool (KICA) is a recognised dementia screening tool for Aboriginal and Torres Strait Islander Peoples in Australia.

Maintaining nutrition and hydration is a common clinical issue for people with dementia. Dementia affects the area of the brain that controls swallowing. Swallowing issues (dysphagia) can be caused by general weakness and frailty, as well as physical problems like a sore mouth or dental issues. [9] It is crucial to have a Speech Pathologist assess anyone with swallowing difficulties to determine if it's safe for the person to continue to eat or drink. [9]

• The Eating and Drinking with Acknowledged Risk (EDAR) (1.3MB pdf) framework is a useful nutrition and hydration guide.
• The ELDAC Allied Health Toolkit also has further information on the Eating and Drinking with Acknowledged Risk (EDAR).
• The Mini-Nutritional Assessment Short-Form (MNA®-SF) (68kb pdf) is a screening tool that can be used to identify adults over 65 years of age who are malnourished or at risk of malnutrition.
• The ELDAC Managing Risk Toolkit has a section on Ongoing Assessment in managing nutrition and hydration risk.