Assess Palliative Care Needs - Dementia

Assess Palliative Care Needs

Palliative care provides high quality health care to people living with a life-limiting illness to live as well as they can by focusing on their physical, psychological, cultural, social, and spiritual needs. Palliative care that takes a person-centred approach to care to will ensure the individuals needs are met.

All clients or residents with dementia identified as at end of life using the SPICTTM should have a palliative care needs assessment. The life experiences of a person such as age, culture, religion, ethnicity or experience should be considered.

Assess End of Life Needs - ELDAC Care Model

Re-assessment should also occur regularly and at key transition points in the person’s trajectory, for example:

  • if there has been a significant functional or medical decline
  • if there is a sudden acute event
  • if discussions around goals of care are required particularly around futile treatment
  • following a change in location of care (i.e. home to residential aged care)
  • following hospitalisation.

Comprehensive Palliative Care Needs for People Living with Dementia

This section provides tools specifically for assessing palliative care needs for people with dementia.

The Advance Project® provides free resources to support advance care planning and palliative care for people living with dementia. The Distress Observation Tool (DOT) has been designed for use by family members, care workers and health professionals caring for a person living with advanced dementia. It looks at four main things:

  • 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 that can help to focus on what you might do next
  • The opportunity to start to think about what might help.

There is no charge to use the DOT but users need to register to download the tool. This link will take you to register for The Advance Project® Resources. There are two DOT versions that can be completed daily or weekly. To assist you in completing the DOT one of the learning modules is dedicated to assessing palliative care needs.

The IPOS-Dem is a proxy measure for people with dementia designed in the United Kingdom. The developers of IPOS-Dem recommend that the scale 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, enjoyment and a rating of whether practical problems such as hearing aids, glasses, etc. have been addressed.

The IPOS-Dem is free and users need to register to download the tool, user manual and notify use of the tool by email.

The ELDAC Residential Aged Care, Home Care and Primary Care Toolkits have a framework for assessing palliative care. Depending on where the person with dementia is being cared it is recommended to reference these resources to complement the dementia specific assessments provided below.

Watch the videos on Assess Palliative Care Needs for Residential Aged Care and Home Care that will help you to describe the importance of person-centred and holistic assessment; identify the four domains of wellbeing used in palliative care assessment; and recognise the importance of care planning to support end of life care.

Focused Assessment

As a person’s dementia progresses some symptoms may need a more focused assessment. The following section discusses assessment of pain, nutrition and hydration, and responsive behaviours.

Pain is a common symptom in people with dementia and may be expressed verbally, through body language, emotional responses, behaviours, and physiological changes. 7

The Australian Pain Society and National Ageing Research Institute has released a 2nd Edition of their Pain Management Guide (PMG) Toolkit for Aged Care (790kb pdf). They recommend 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 Assessment Scales – 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.

Scales that only measure one aspect of pain, such as ‘how much pain you are in’ include the Verbal Descriptor Scale (VDS) (31kb pdf) or the Numeric Rating Scale (NRS) (31kb pdf).

If the person is able to indicate more than just the severity of their pain then the Modified Resident’s Verbal Pain Inventory (M-RVBPI) (82kb pdf) is recommended.

Pain Assessment Scales – Person is not able to answer questions

If the person is not able to answer questions or respond meaningfully to questions on pain then use an observational behaviour scale. These include the Abbey Pain Scale (43kb pdf) which was designed in Australia or the Pain Assessment IN Advanced Dementia Scale (PAINAD) (44kb pdf).

Maintaining nutrition and hydration is a common clinical issue for people with dementia, and particularly for those with advanced dementia. Dementia affects the area of the brain that controls swallowing. Swallowing issues may also be caused by general weakness and frailty. It is also important to rule out any physical issues, such as having a sore mouth or dental problems.

Assessment by a Speech Pathologist should be conducted for anyone with swallowing problems to ascertain if it is 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 guide.

Responsive behaviours include: Agitation, disruptive behaviour, irritability, hallucinations, anxiety, depression, disinhibition, and appetite and sleep alterations. They are experienced by more than 90% of people with dementia and are often associated with poor outcomes. 10

Dementia Training Australia has created quick reference cards, lanyards and an App for health professionals and care staff working with people with dementia. They have identified 10 common responsive behaviours:

  • Aggression
  • Agitation
  • Anxiety
  • Apathy
  • Depression
  • Disinhibition – Social/Sexual
  • Psychotic Symptoms – Delusions and Hallucinations
  • Sleep Disturbance
  • Vocally Disruptive Behaviour
  • Wandering
  • Delirium

In residential aged care, a Behaviour Support Plan (BSP) is a requirement for anyone that has a changed behaviour. Dementia Support Australia has resources to support the use of Behaviour Support Plans.

Page last updated 8 December 2022