Case Study – John

This ELDAC Dementia Toolkit case study can be used in several ways to improve palliative and end-of-life care for older people with dementia:

• Build Individual Knowledge: The case study provides information and resources to learn at your own pace and demonstrates how palliative care principles can be applied in practice.
• Group Training and Education: This case study can serve as a valuable resource for training the healthcare team to use the ELDAC care model to understand the complexities of dementia care, apply recognised assessment measures, and understand the importance of a multidisciplinary approach.
• Care Planning: The detailed assessment and care strategies outlined can guide other care teams in developing personalised care plans in their setting.
• Policy Development: Insights from the case study can inform policies and protocols in aged care facilities to ensure best practices are followed.
• Family Support: Reflecting on this case study can help your team understand the care process and the importance of advance care planning and palliative care from the family’s perspective.
• Quality Improvement Activities: This case study can contribute to local improvements in your approach to end-of-life care for older people with dementia.

This case study on John demonstrates how to apply the elements in the ELDAC Care Model in the context of an older person with dementia residing in Residential Aged Care (RAC). The ELDAC Care Model includes 8 clinical elements. The Clinical Care section of the ELDAC Dementia Toolkit contains information on how to provide palliative care and advance care planning based on each of the 8 elements in the ELDAC Care Model. John’s story will unpack each of the elements.

John had an advance care planning conversation with his GP not long after his dementia diagnosis, in order to share his future health care preferences. John appointed Emily as his substitute decision-maker and made an Advance Care Directive. It states that he does not want to be resuscitated if his heart stops beating and his preference is not to die in hospital. Also included in John’s Advance Care Directive is to have all necessary pain management to ensure his comfort. He requested a preference for regular visits from the chaplain and to have his favourite music playing when he dies.

John is presenting with physical decline and changes in cognitive function. He is less mobile and prefers to stay in his room. He is also sleeping more during the day, talking less and not eating all his meals. John has been observed to be holding his forehead, wringing his hands and frowning. He is experiencing more confusion about where he is, what day it is, and has refused care several times. In the last few days, John has called out for help and not remembered to use his call bell.

The registered nurse (Sue) undertakes a full physical assessment and records John’s vital signs, weight and urinalysis. Given John’s physical and behavioural changes, Sue uses the ‘Surprise Question’ to screen John in relation to requiring palliative care and as a trigger for deeper conversations, assessments and care planning.

The Surprise Question asks, “Would you be surprised if John died within the next 12 months?” Given his rapid decline and increasing care needs, the Sue and the team agree that they would not be surprised.

Having used the Surprise Question as a trigger, Sue undertakes further assessment to determine the stage of John’s dementia. The Functional Assessment Staging Tool (FAST©) (pdf) evaluates the progression of dementia by using seven main stages that describe the functional decline of the older person with dementia. Each main stage includes sub-stages. On admission, John was stage 6d, indicating moderately severe dementia with urinary incontinence.

Sue has now assessed he is at stage 6e. This stage is moderately severe dementia with faecal incontinence and compounding reduction in mobility requiring substantial assistance with daily activities.

Sue also uses the Supportive and Palliative Care Indicators Tool (SPICT^TM) (pdf) to assess John. The SPICT helps identify people with deteriorating health who may benefit from palliative care. Key indicators for John identify that prior to admission to residential aged care he had unplanned hospital visits due to complications from dementia and infections. He also has positive indicators on the SPICT for dementia.

John’s Australia-modified Karnofsky Performance Status (AKPS) (pdf) score was 40. This indicates he was in bed more than half of the time and has greater dependence requiring considerable assistance. John also lost weight and has severe arthritis pain despite ongoing treatment.

Clinical tools help guide care planning, symptom management, and communication with John’s family.

Care workers used the Stop and Watch Early Warning Tool (pdf) to identify and report a decrease in John’s appetite and refusal to eat with subsequent weight loss. John was assessed again with the AKPS to determine changes in overall performance status. His score is now 30, indicating that he is unable to weight bear, is bedfast and requires considerable assistance.

John’s arthritis pain is a significant issue. The healthcare team uses both the non-verbal Abbey Pain Scale (pdf) and the verbal Numeric Rating Scale (NRS) (pdf) to evaluate his pain levels. They ask John “can you tell me how bad the pain in your knees and back is?” or “where does it hurt?” This will help them have a better understanding of his pain. The team implement a comprehensive pain management plan, including both pharmacological and non-pharmacological approaches, such as physical therapy and massage.

The team also use the Integrated Palliative Outcomes Scale for Dementia (IPOS-DEM), which is a recognised comprehensive assessment and outcome measure for people with dementia at all stages. The scale assesses common symptoms that the person may have been affected by over the previous week. Symptoms where John scores 3 or 4 require a timely response. These include pain, weakness, sleepiness, loss of mobility and swallowing deficit (holding food and fluid in his mouth). Emily’s anxiety about her father is also noted.

The care home’s monthly Palliative Care Needs Rounds (PCNR) (pdf) meeting with the clinical team and the Palliative Care CNC or Specialist Palliative Care Team member (where available) used the PCNR checklist to develop an outcomes-based plan of care. The discussion covered John’s physical, psychological and social status. The meeting also focused on his current treatments; how to promote holistic symptom management; and anticipatory planning.

Over the following month John’s condition deteriorates, his condition is monitored, and care goals are reviewed. Ensure continuity of care to promptly identify and respond to any deterioration. This includes changes related to John’s primary diagnosis of dementia, as well as other emerging medical concerns. Reassessment to distinguish between deterioration that is due to untreatable causes, such as disease progression or reversible causes is essential. A full clinical reassessment for John is done, including for pain and other symptoms. There is a consultation with John’s GP.

John’s daughter Emily is contacted regarding his deteriorating condition and that John no longer has decision-making capacity. By maintaining continuity of care, the healthcare team can better manage John’s condition, provide timely interventions, and support both John and Emily through his dementia journey. In addition to the chaplaincy support, RN Sue has provided Emily with links and information to valuable resources. These include the How do I know if someone with dementia is dying? from Dementia Support Australia and information on the Carer Gateway counselling services.

Sue gets in touch with Emily following John’s death to offer her support and she lets Emily know the team is available to talk about how she is coping. She also gives Emily a bereavement pack that contains information about grief, bereavement and relevant support services.

The home undertakes personalised and respectful vale practices within the aged care setting. These include meaningful activities to honour John, including a memory book of compiled photos and stories signed by care workers and others. The home holds a regular memorial service organised for family, friends, other older people in the home and staff. This is a way they can share memories and celebrate the lives of people now deceased. A battery-operated candle and a framed photo of John are displayed in a dedicated alcove to remember John.

All these gestures commemorate John’s life and provide comfort to those who loved him. This process ensures that the deceased is treated with dignity and respect, while also supporting the bereaved family and community.