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The long goodbye

Introduction to Module 5

Module 5 is a deposit of all the activities from the other modules in one spot as well as links to other resources of use. 

About these activities & resources

The activities and resources for each module are suggestions. However, many of these are suitable for use with other modules, and you may choose to mix and match to suit your need.

Activities from Module 1

1.1 Points to consider:

How does a person’s life experiences and history affect their response to diagnosis with chronic or terminal disease?
How may a diagnosis of chronic or terminal disease affect the relationships the person has with family and loved ones?

1.2 Points to consider:

What type of psychosocial effects might a terminal diagnosis have on the patient; their immediate family?
As an older patient/couple, how might Ed & Mary’s experience differ from a younger patient/couple?

1.2 Suggested activities :

Use a jigsaw classroom to explore:
•             psychosocial effects of a terminal diagnosis across the lifespan
•             dementia types

Introduce concept of ‘reminiscence tools’

Relate theories of grief and loss to the lived experience for patient and carers.  In particular, consider the process of reconciling old expectations with new ones as limited by the diagnosis.

Consider how your values, religious or cultural beliefs frame your understanding of death and dying, and how this may influence your response in a situation like Ed and Mary’s.

In particular, consider the concept of ‘obligation’ and what it means to you.  How may this be different to someone from a different background/culture/religion/social group to you? How does this change depending upon the role a person has within the family/group?

How can life history be used positively?

In what ways can family and friends gather memories with the person diagnosed with dementia?

1.3 Points to consider :

What behavioural management strategies and tools can be employed to support the patient?

How can trust in service/s be engendered?

1.3 Suggested activity:

–Natural therapies
–Pharmacological management vs. behavioural management

1.4 Points to consider:

Reflecting on the nurse’s attitudes and behaviour in response to change in the person being cared for what is the nurse’s role in fostering behavioural, emotional and environmental safety

How might you approach someone to help with ALs?

1.5 Points to consider:

–how is it best administered?
–is it appropriate for late stage care?

1.5 Suggested Activities:

With changed behaviour, consider:
Positive behaviour management
–communication tools

Swallow assessment

1.6 Suggested Activities:

High-fidelity scenario:
Simulation of Nurse-led therapeutic communication with Ed and family

1.8 Suggested Activities:

Jigsaw classroom –

What does the research say:
1. legislation concerning organ donation and transplant
2. policies and procedures around organ donation and transplant

Role play:
Therapeutic communication:
1. broaching the subject of organ donation
2. dilemma

How is the family’s need/desire to say goodbye/stay with the patient balanced with the need to move forward with the donation/transplant procedure?

i.e. who’s in charge of the end-of-life moment?

1.9 Points to consider:

What happens now?
–care workers (paid and unpaid)?
What kind of support will the family need?
How would the nurse support a family through organ donation decisions?
How would the nurse support a family through the organ donation process?

Suggested Activity

Jigsaw classroom:
What does the research say about mourning and grief?
Develop some strategies to use in the clinical setting?

Activites from Module 3

3.1 Points to consider:
Seven years since diagnosis–
What does the research say?

Suggested Activities;
effect of long-term caring on the:
–primary carer
  1. paid
  2. unpaid

3.2 Points to consider:
–What should the Nursing Student know about the trajectory of Dementia/Lewy Body?
–What should the carer know about the trajectory of Mary’s disease?

3.2 Suggested Activities:
Mapping the trajectory

Review the trajectory
*trajectory should be reviewed on a six-monthly basis (date-dependent)

3.3 Points to consider:
The role of reminiscing
–tools and techniques
–Reminiscing through
   1. music
   2. song
   3. dance
(also, what music, songs, dance?)
–contemplate the benefits of reminiscing
–how might reminiscing keep the carer motivated?

The care approach:
–care/caring response

3.3 Suggested Activities:
Adapt and /or brainstorm help sheets to develop person-centred care plan
Use help sheets to help explain to Ed what is happening to Mary
Develop material for Ed

3.4 Points to consider:
What can we do to support the carer?
When change occurs, re-assessment is needed:
–what (Falls, Mini mental & General health)?

Assumptions and Understanding:
–what is real understanding?
–where is Ed at?
–what could we give him?

Support systems
Societal/generational expectations of support

Is it time to discuss the next stage of care?
–what next?

What’s happening to Mary’s skin?
–plan & action

3.4 Suggested Activities:
Timeline exercise; look at early life experiences as well as cultural, immigrant, environmental (depression, war, etc.), and how these impact an 80-year-old

Understanding what services are available, why they are available

What could Ed be linked to:
–community groups
–carer groups

(bringing people in to talk to the carers)

Review of services, and understanding equipment

3.6 Points to consider:
–what are they?
–what is their importance?
–how are they used?

3.6 Suggested Activities:
Examine/ Discuss
the effect on carer of conversations that are not conversations:
–just managing the situation
i.e. effects on carer of caring approach/management

3.7 Points to consider:
Carer Communication with the person being cared for:
–anticipating (type and response)
–understanding of what is
Are social contacts being maintained?

Is respite available/being used?

What is the role of the family at this time?

Priorities: whose come first?

What type of support is needed and how could/should it be offered?

Why do you think the ‘matter’ is ‘closed’?

What are the short and long term effects of the ‘matter’ being ‘closed’?

Are the carer’s emotional/psychological/physical needs being met?

–refer to historical assessment
–reiterate the progress of the disease

–what will help Mary recognise
  where she is?

3.8 Points to consider:
End of life consideration
Grief process:
–present and future loss

3.8 Suggested Activities:

–What is end of life care?

3.8 Suggested Activities:

Change (amplified loss of function)
–swallow (review diet):
–develop a menu

3.9 Points to consider

End of life care
–start talking
–develop a plan

An Interdisciplinary approach
–develop a more concerted team

Web links

Recommended readings

Australian institute of Health and Welfare (2015). The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples: 2015. from

Australian Institute of Health and Welfare. (2012). Dementia in Australia. Retrieved from

Donaghy, P.C., Barnett, N., Olsen, K., Taylor, J.P., Mckeith, I.G., O'brien, J.T., & Thomas, A.J. (2017). Symptoms associated with Lewy body disease in mild cognitive impairment. International Journal of Geriatric Psychiatry.

Galvin, J.E., Duda, J.E., Kaufer, D.I., Lippa, C.F., Taylor, A., & Zarit, S.H. (2010). Lewy body dementia: the caregiver experience of clinical care. Parkinsonism & Related Disorders, 16(6), 388-392. doi: 10.1016/j.parkreldis.2010.03.007

Harding, A., Broe, G., & Halliday, G. (2002). Visual hallucinations in Lewy body disease relate to Lewy bodies in the temporal lobe. Brain, 125(2), 391-403.

Holley, C.K., & Mast, B.T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49(3), 388-396.

Lee, D.R., Mckeith, I., Mosimann, U., Ghosh‐Nodyal, A., & Thomas, A.J. (2013). Examining carer stress in dementia: the role of subtype diagnosis and neuropsychiatric symptoms. International Journal of Geriatric Psychiatry, 28(2), 135-141.

Leggett, A.N., Zarit, S., Taylor, A., & Galvin, J.E. (2010). Stress and burden among caregivers of patients with Lewy body dementia. The Gerontologist, 51(1), 76-85. doi: 10.1093/geront/gnq055

Mcconaghy, R., & Caltabiano, M.L. (2005). Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being. Nursing & Health Sciences, 7(2), 81-91.

Mckeith, I.G., & Mosimann, U.P. (2004). Dementia with Lewy bodies and Parkinson's disease. Parkinsonism & Related Disorders, 10, S15-S18.

Mrak, R.E., & Griffin, W.S.T. (2007). Dementia with Lewy bodies: Definition, diagnosis, and pathogenic relationship to Alzheimer’s disease. Neuropsychiatric Disease and Treatment, 3(5), 619.

Schneider, J.A., Arvanitakis, Z., Yu, L., Boyle, P.A., Leurgans, S.E., & Bennett, D.A. (2012). Cognitive impairment, decline and fluctuations in older community-dwelling subjects with Lewy bodies. Brain, 135(10), 3005-3014. doi: 10.1093/brain/aws234

Shaw, J., Downe, S., & Kingdon, C. (2015). Systematic mixed-methods review of interventions, outcomes and experiences for imprisoned pregnant women. Journal of Advanced Nursing, 71(7), 1451-1463. doi: 10.1111/jan.12605

Shuter, P., Beattie, E., & Edwards, H. (2014). An Exploratory Study of Grief and Health-Related Quality of Life for Caregivers of People With Dementia. American Journal of Alzheimer's Disease & Other Dementias, 29(4), 379-385. doi: 10.1177/1533317513517034

Svendsboe, E., Terum, T., Testad, I., Aarsland, D., Ulstein, I., Corbett, A., & Rongve, A. (2016). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease. International Journal of Geriatric Psychiatry, 31(9), 1075-1083. doi: 10.1002/gps.4433

Warren, L.A., Shi, Q., Young, K., Borenstein, A., & Martiniuk, A. (2015). Prevalence and incidence of dementia among indigenous populations: a systematic review. International Psychogeriatrics 27(12), 1959-1970. doi: 10.1017/S1041610215000861

Activites from Module 2

2.1 Points to consider:

What is happening here? 
What support services are available to Ed and Maree?

2.1 Suggested Activities:

Individual and group activities to identify and explore the concept of roles and responsibilities. Consider the challenges and potential impact caring for the person who once cared for you

Jigsaw classroom– 

Students gather the evidence for best practice and present their findings to the group

Identify the key points from Ed’s insights.  How could this important information be used to develop action plans for Mary’s care that support Ed, Maree and Mary?

Using an example of a ‘typical’ home where you live as a guide, consider the support services, alterations and potential challenges to providing care. Mary’s symptoms would be managed  differently in a hospital/aged care facility.  Consider the strategies that may be implemented in a care facility to meet Mary’s needs. What advice would you give Ed?

2.2 Points to consider:
What is carer fatigue?
How would you discuss this with Ed?

2.2 Suggested activities:

Divide a page into three columns:
Column 1 – physical/psychological challenge to be addressed
Column 2 – for each challenge, identify a strategy
Column 3 – for each strategy, identify tools and resources required

Ed’s insights are a valuable learning tool for healthcare providers. Reflect on the changes you would make to providing care for Mary that considers Ed’s needs

Jigsaw classroom –
Research and present current best evidence on the concepts of ‘activity of living’and ‘activity of dying’.

2.3 Points to consider:
What does respite provide?
What should respite/carers provide?
How do we support the decision-making response?  

2.3 Suggested Activities

Discuss (in groups)
1.  The Activities of Living (ALs) & – where on the continuum is Mary?
2. How do we balance/can we balance the carer’s need for respite & the patient’s wish to not be ‘in care’?
3. What is your position?     
4.   How might your personal attitude affect your ability to work with patient? Carer?        
5.   Develop some strategies?

2.4 Points to consider:
Consider Mary’s emotional/psychological state
How might the nurse respond to Mary’s declaration?
How might the nurse / Health care team help Mary at this point? 

2.4 Suggested activities:
Reflect on your own attitudes/ideas
–How do you think dying people  should be cared for?

2.5 Points to consider:
What specific assessment/s could/should be done at this time?
How is the person being cared for and the carer involved in the falls management plan?
What does it mean to have poor/inconsistent insight:
–to Mary
–to Ed

2.5 Suggested Activities:
Discuss questions the nurse might use to clarify (with Ed) what is happening

2.6 Points to consider

–Type of involvement
–When to be involved
–How much involvement
–Trust-building exercises

What should the Student nurse know?

What principles does Ed need to understand (e.g. touch technique)?

Health Management & Managing delusions
–how should/could carer respond?

What is the difference between hallucination and delusion?
–review and characterise ‘episodes’ over the progress of Mary’s Lewy Body

2.6 Suggested Activities:
Develop a wound care strategy
Develop a falls management strategy
Demonstrate how you would help carer understand what to do Develop a 15-minute presentation using layman language that would help Ed understand what to do

2.7 Points to consider
–what type?

When home care/community nurse is not easily accessible, what does the carer need to know?

Assessment & Management (medication)

Diversional technique
–creative outlets

2.7 Suggested Activities:
Role Play:

–Sleep assessment
–Skin assessment

2.8 Points to consider:
Fluctuating levels of insight
–how can this be managed?

2.8 Suggested activities:
Research, discuss, share with group
–palliative care &
–when could/should this subject be broached with patient? family?

2.9 Points to consider:
What effect does Mary’s depression have on Ed?

Building /supporting resilience:
–what needs to be in place to support the carer?

2.9 Suggested Activities:
Develop/adapt physical / psychological assessment

2.10 Points to consider:
The process of physical and mental deterioration

Time travel
Reduction of Anxiety

Increased physical load to the carer

2.10 Suggested activities:

Research & Group Discussion/s –
1. types of medication for dementia:
– why?
– actions?
2. other dementia-related medication
3. what would you be teaching the carer about drug/side effects
–carer information written for the carer

2.11 Points to consider:
1. What’s happening with Mary?

2. Depression in Dementia
–how is it managed?

2.12 Points to consider:
Role of spirituality in care?

Reflect on own beliefs and attitudes
–what does the research say?
–application to practice
Wound care

2.13 Points to consider
What evidence would the HP /team use to inform decision?

2.13 Suggested Activities:
the pros and cons arguments /solution for ‘where to from here?’


Activites from Module 7

7.1 Points to consider:
Decision-making for the future–
– Explore/understand own belief systems
–Family involvement:
           –is it a decision to be left to
             the primary carer?

– when considering future planning,
   refer to tasks of mourning iii. ‘Adjusting to an environment from which the deceased is missing’

Communication is critical–
–what role does the professional

–need for professionals’ honesty
–what would the professionals say
  and do to support Ed?

7.1 Suggested Activities:
Jigsaw classroom

1. Understanding not letting go
–what does it mean?
–what is the long-term impact?
–impact on family (what is left of
  the family? family dynamics) 
–informed decision-making

2. Providing good support
–role of the support worker
–non-coercive approach
–relating it to specific context
–knowledge of incapacity/capacity of
  carer (over time /during the

7.2 Points to consider:
When does the Act of Dying begin?
Generational approach to health care
–what information?
–when/what is appropriate

–who are the stakeholders/who should information be offered to?

–what does the research say?

Advanced care plan
Organ donation

The model for nursing

At what stage/time is it appropriate to begin discussing palliative care?

7.3 Points to consider:
Who and how many involved in Mary’s care
‘Outside’ intervention and sidelining the primary carer

Communicating care to the family
–who is in charge?
–who communicates?
–consistent messaging
–what is the nurse’s role?

Type of Support & Appropriate Support: