Table 1 The overview of content and learning outcomes for each of the IMPETUS-D modules
Module title | Overview of content and targeted learners | When you’ve finished this module, you’ll be able to do 3 things: |
|---|---|---|
1. Nancy just seems to be going downhill, for no reason … | This module describes the natural progression of dementia and how to recognise when deterioration is due to dementia versus delirium. The module introduces Nancy Thompson a resident with dementia, and in two video-based scenarios Nancy declines (i) due to the progression of dementia and (ii) due to an acute delirium. Targeted learners: PCAs | • Know more about the natural progression of advanced dementia • Recognise the difference between deterioration due to dementia or due to delirium • Document what you’ve noticed and pass this information to a nurse |
2. Nancy, Bob and Ted: Getting care ‘just right for you’ | This module focuses on caring for a person with advanced dementia when they are approaching the end of their life. It includes regular discussions with the family so everyone is on the same page, and focusing care on maximising wellbeing, comfort and dignity, and minimising distress. The module includes audio recordings of PCAs and family members talking about 3 residents who received suboptimal care, and asks learners to write down their thoughts on what could have been done differently. Targeted learners: PCAs | • Recognise when a person with advanced dementia is approaching the end of their life • Know what needs to be done at this stage • Know how to make valuable contributions to the care plan |
3. “Should Antonio stay or should he go?” | This module discusses the reasons why people with advanced dementia are typically best cared for in the care home, and describes the challenges people with advanced dementia face in the busy hospital environment. The module introduces Antonio Conti a resident with dementia and his wife Bianca. It includes a video-based scenario where Bianca confronts a PCA when Antonio becomes sick, as she is very worried that Antonio may need to go into hospital, as last time he went to hospital, things did not go well. Targeted learners: PCAs | • Know that when a resident with advanced dementia gets sick, usually staying in the care home is the best place for them • Know the challenges for a resident with advanced dementia if they go to hospital |
4. What would they choose? | This module gives an introduction to Goals of Care (GOC) plans, and highlights that finding out what’s important to the person is vital to providing best care. It follows the development of a GOC plan including a GOC discussion between Antonio, his family, the care manager and general practitioner. This module includes audio-recordings of a quality GOC discussion with Antonio’s GP and family; and audio-recordings from care home staff giving their perspective on GOC discussions. Targeted learners: nurses and care managers | • Describe a GOC plan • Identify the benefits of a GOC plan for a person with advanced dementia • Know how to discover and value what the resident wants or would have wanted if their advanced dementia had not impaired their decision making capacity |
5. Goals of care plans – making them useful | This module describes what is needed to be a high quality and best practice Goals of care (GOC) plan. It provides examples of how to best use GOC plans for residents with dementia, and describes situations when a person with advanced dementia needs to go to hospital. In this module a video-based scenario involving Antonio Conti demonstrates there are exceptions that require transfer to hospital. Targeted learners: nurses and care managers | • Describe the features of a quality GOC plan • Recognise the importance of updating GOC plans regularly and that these plans be informed by discussions with the resident and their family • Identify the exceptional circumstances when residents with advanced dementia and nearing the end of their life, may benefit from going to hospital (e.g. fractured hip) |
6. “At the end, I just don’t want any pain.” | This module discusses pain and the challenges in managing pain in people with advanced dementia. It highlights the importance of how to recognise it, document it, and act on it including speaking up for people with dementia who are in pain. In addition, it describes some of the myths and truths about opioid use. This module introduces Mrs. Keya Basu a resident with advanced dementia. It includes a video-based scenario where Mrs. Basu’s daughter Priya can hear her mother crying out in pain while a wound dressing is being changed. Targeted learners: PCAs | • Effectively assess and document pain in a person with advanced dementia • Speak up in support of a resident to get the pain relief they need • Know the myths and truths about opioid use |
7. “My mother won’t eat or drink.” | This module focuses on recognising the dying phase, including reduced eating and drinking, and helping families understand that reduced eating and drinking at the end of life is normal. This module includes a video-based scenario where Mrs. Basu’s daughter Priya tells a PCA she is concerned her mother is not eating or drinking, and questions the need for a drip or feeding tube. Targeted learners: PCAs | • Know that reduced eating and drinking is normal at the end of life • Explain these end of life changes (e.g. reduced eating and drinking) to family members • Describe how to give good mouth care |
8. The last few days were so precious | This module has 2 parts. The first discusses focussing on what is most important to the person when they are dying and ways to keep a person as comfortable as possible. The second part describes terminal restlessness a common end of life symptom, and how care staff can recognise and manage it. This module includes a scenario where Mrs. Basu’s daughter Priya is talking to a PCA about her mother being restless. Targeted learners: PCAs | • Offer ideas to families about making the most of the time left when a person is dying • Encourage family to participate in optimising care • Recognise and manage restlessness when a person is dying |
9. “What if Mrs. Basu dies on my shift?” | This module focuses on changes in breathing at end of life, what to expect as death approaches and ways to support the family. It also discusses the concerns care staff may have as a resident approaches death and includes reflection of learners’ real experiences. This module includes a scenario with a PCA expressing concerns about “what if Mrs. Basu dies on my shift?” Targeted learners: PCAs | • Know what to expect as death approaches, including common breathing changes • List what needs to be done following death • Describe the importance of grieving a resident’s death and celebrating their life |
10. “I didn’t know what to say …” - Communicating when a resident is nearing the end of their life | This module raises the importance of communicating openly, honestly and frequently with residents and their family members. Strategies for communication are offered for difficult conversations. Three video-based scenarios of challenging situations involving Antonio Conti’s family are presented. Targeted learners: all care staff | • Describe effective strategies for communicating with a resident with advanced dementia at the end of their life. • Describe effective strategies for communicating with key individuals (family members) about a resident with advanced dementia at the end of their life. • Use words and phrases that are sensitive and helpful in the period around the end of life. |
11. “It can be so emotional … it can really take you down” - Managing your own feelings and wellbeing when a resident dies | This module shifts the focus of caring from residents to care providers. It encourages carers to consider their own feelings about death and dying and how they manage these feelings when a resident is at the end of their life and then dies. It offers strategies to manage emotional wellbeing and ways to contribute a compassionate culture in their workplace. The module includes audio recordings of PCAs talking about some real experiences, and encourages learners to role play a conversation that acknowledges feelings. Targeted learners: PCAs | • Describe your feelings when a resident is at the end of their life and why it is important to be aware of them • Develop strategies to manage your emotional wellbeing when a resident is at the end of their life • State ways to contribute to building a compassionate culture in your workplace |