Assess Palliative Care Needs

Palliative care is person and family-centred care provided for a person:

with an active, progressive, or advanced disease
who has little or no prospect of cure
who is expected to die
for whom the primary goal is to optimise the quality of life. [1]

Palliative care helps people live their life as fully and as comfortably as possible with a life-limiting or terminal illness. It identifies and treats symptoms which may be physical, emotional, spiritual or social. [1]

A comprehensive needs assessment can support the best possible quality of life for a person living with dementia. Assessment helps:

monitor for changes
identify existing or emerging care needs
guide care planning and referral needs, where appropriate.

It is good clinical practice to regularly reassess for changes in palliative care needs.

Assessing palliative care needs in people with dementia is crucial for several reasons:

Dementia affects not only cognitive functions but also physical, psychological, social, and spiritual wellbeing. A thorough assessment is multidimensional and ensures comprehensive care.

How to assess palliative care needs when working with people with dementia
Understanding the person

Part of understanding the needs of a person with dementia includes taking a family and carers’ history of significant relationships and life events. This history can serve both as an assessment tool and as an intervention strategy. A well-documented history can provide insights into the persons cognitive and emotional state of mind and behavioural responses.

Documenting the life story of a person with dementia provides a way of recalling and capturing memories about the person’s life and connections. The life biography of a person with dementia assists in:
- enhanced understanding
- improved communication
- supporting an emotional connection, and
- providing person-centred care.
Your service may already have a template as part of the admission and assessment process to understand the individual. Dementia Support Australia has the About Me resources, which can be used to guide conversations about personal preferences, history, values and relationships. Using a person-centred approach and making a connection by being present and providing responsive care is critical.

Assessing a person’s quality of life may help in understanding the person with dementia. The Quality of Life in Late-Stage Dementia (QUALID) Scale (pdf) can be completed by family and carers or a professional caregiver.

Assessing the needs of people with dementia

It is important to have a comprehensive assessment of the needs a person with dementia. Some symptoms may require more focused assessments. For foundational guidance on how to approach a Palliative Care Needs Assessment, see the Assess Palliative Care sections of the ELDAC Residential Aged Care or Home Care Toolkits. In addition, this section of the ELDAC Dementia Toolkit provides tools specifically for assessing the palliative care needs of people with dementia.

The Integrated Palliative Care Outcomes Scale for Dementia (IPOS-Dem)

The IPOS-Dem is a recognised comprehensive assessment and outcome measure for people with dementia at all stages. There are 3 report versions available for self, family and staff. The IPOS-Dem is freely available once users register to access and download the tool and user manual.

It is recommended that the IPOS-Dem be used on admission and then monthly thereafter; during care plan review; or if there is a change in the person. The scale assesses 19 symptoms that the person may have been affected by over the previous week. In addition, there are questions about anxiety, depression, and enjoyment. There is a rating of whether practical problems, such as hearing aids and glasses, have been addressed.

Focused assessments

As a person’s dementia progresses some symptoms may need more focused assessments as discussed below.
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 with dementia is a vital part of symptom management.

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

Pain identification

Pain assessment

Pain treatment

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 Pain Rating Scale (123kb 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 (240kb 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) (23kb 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 late-stage 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:

Aggression

Agitation

Anxiety

Apathy

Appetite Alterations

Delusions and Hallucinations

Depression

Disinhibition – Social/Sexual

Irritability

Restlessness

Shadowing

Sleep Disturbance

Vocally Distruptive Behaviour

Wandering

Delirium. [7, 8]

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 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, 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 (pdf) for early detection of mild cognitive impairment. Administration and scoring instructions (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) (pdf) framework is a useful nutrition and hydration guide.

The Mini-Nutritional Assessment Short-Form (MNA®-SF) (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.
How to build knowledge, confidence and skillsin assessing palliative care needs in people with dementia
- Review the framework for assessment in the ELDAC Residential Aged Care or Home Care Toolkits. Regardless of the care setting for a person with dementia, this framework can be used to support assessment in conjunction with the dementia-specific assessments suggested within this section of the ELDAC Dementia Toolkit.
- Watch the ELDAC Toolkit Educational Videos on how to assess palliative care needs in residential aged care or home care settings. The videos describe the importance of a person-centred and holistic assessment and explain how care planning is central in supporting end-of life care.
- Use the ELDAC Case Study on John to build your understanding of how to assess the person’s physical, social and occupational, psychological and spiritual needs.
- The Advance Project^® provides practical, evidence-based resources and training specifically on dementia.
- Review your organisation’s resources for tools that help you understand the person with dementia and their needs, including relationships with family and carers.
- Practice using the assessment tools suggested in this section for specifically assessing the palliative care needs of people with dementia.
- Dementia Training Australia (DTA) has videos on an introduction to changed behaviours and changed behaviours associated with Alzheimer’s Disease.
- There are several resources to help understand the assessment of pain for people with dementia. These include:
  - Dementia Support Australia (DSA) has a short video and help sheet on identifying and responding to pain.
  - Dementia Training Australia (DTA) has a free online course over 3 modules on recognising and acting on pain in people living with dementia for direct care workers.
  - HammondCare and the Cognitive Decline Partnership Centre (CDPC) have created a three-part education video series called Intervene – Pain Assessment. This series explains current best practice in diagnosing, assessing, monitoring and treating pain.
  - The Agency of Clinical Innovation has a video on non-verbal pain assessment that discusses where to start in a pain assessment and different strategies to use.
Information for families and carers

Carer Handbook for Understanding Changed Behaviours

Dementia Support Australia

This guide explores what signs of changed behaviours to look for, why they might be happening, and practical things carers or families can do to help.

References
1. Australian Government Aged Care Quality and Safety Commission. Draft Glossary of Terms: Guidance material for the strengthened Aged Care Quality Standards for review and discussion (863kb pdf). 6 Feb 2024 [cited 15 Dec 2025].
2. van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 2014; 28(3):197-209. DOI: 10.1177/0269216313493685. [cited 6 Nov 2025].
3. Eisenmann Y, Golla H, Schmidt H, Voltz R, Perrar KM. Palliative Care in Advanced Dementia. Frontiers in Psychiatry. 2020; 11:699. DOI: 10.3389/fpsyt.2020.00699 [cited 5 Nov 2025].
4. Parker D Lewis J, Gourlay K. Palliative Care and Dementia (4MB pdf) Canberra (AU): Dementia Australia, 2018. Paper Number 43. [cited 5 Nov 2025].
5. Dementia UK. Coping with distress. July 2025. [cited 5 Nov 2025].
6. The Advance Project^®. The Distress Observation Tool (DOT). Dec 2023. [cited 5 Nov 2025].
7. Dementia Australia. Mood and Behaviour Changes. 2024. [cited 5 Nov 2025].
8. Aged Care Research and Industry Innovation Australia (ARIIA). Responsive Behaviours. 17 Sept 2024. [cited 5 Nov 2025].
9. Yu D. Eating and drinking difficulties in dementia. The Association of UK Dietitians (BDA). 7 June 2021. [cited 5 Nov 2025].

Assess Palliative Care Needs

How to assess palliative care needs when working with people with dementia

Understanding the person

Assessing the needs of people with dementia

The Integrated Palliative Care Outcomes Scale for Dementia (IPOS-Dem)

Focused assessments

Pain Assessments

How to build knowledge, confidence and skillsin assessing palliative care needs in people with dementia

Information for families and carers

References