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Dementia: Who, what, and why?: Home

The mental, physical and emotional effects of caring

Video Acknowledgments
Video Producer/DoP - Dan Sanguineti
Camera Operator/Assistant - Michael Watson
Video Editors - Peta Lioulios and Dan Sanguineti

Introduction to Ed's Story

Often the lessons to be learned from recipients of care are overshadowed by more formal learning strategies.  Ed’s Story is one of compassion, strength, laughter, loyalty and loss.  It chronicles the journey of caring for a loved one diagnosed with Dementia with Lewy Bodies.  Unfortunately, diagnosis of any form of dementia is more frequent in our communities than many of us are aware.  Very few people, however, journal their story as their lives, and that of those around them, change. Thus, the richness of learning from recipients of formal care and support is a unique opportunity for all health professionals working in dementia care. Further, the raw, honest insights in Ed’s Story are a valuable learning tool for any health professional from any discipline, particularly those who are still learning their craft.  Sometimes the impact our words and actions have on patients and families is not apparent, and Ed’s reflections allow us a glimpse into how the actions and words affect them, both positively and negatively.

Ed’s journal has been presented in two ways.  One, as a whole journal, presented verbatim that allows the reader to follow the story from start to finish.  Secondly, the contents of the journal are presented in context with the key elements for essential knowledge about caring for someone with dementia.  To complement the text, video vignettes where Ed talks about his and Mary’s experiences, are linked to each theme.  There are also further links to external sites for support groups, government and non-government agencies related to dementia care.  Everyone involved in Ed and Mary’s journey, as well as the project team, and other professionals the team encountered along the way, were invited to share their reflections which have also been made available as part of this resource.

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.

A long Goodbye - Ed's Story

Welcome to “A Long Goodbye – Ed’s Story”.

This suite of electronic resources built around Ed’s journal, chronicles Ed’s experiences as a carer following Mary’s diagnosis with Lewy body dementia.  Students and experienced health professionals are rarely afforded an insight into how their words and actions are interpreted by, and impact, patients, families and friends.  Formal and informal carers also seek better understanding of dementia types, causative factors, symptoms, strategies to assist, services available, without necessarily having access to reliable resources.  To meet the needs of such a diverse audience, Ed’s Story is freely available and accessible to any community member who seeks information about dementia care.  As a live suite of resources, A Long Goodbye – Ed’s Story ongoing review and updating of content will ensure accuracy and that the content reflects best practice.  As part of the continual evolution of this site, users are encouraged to provide feedback to the project team via the feedback button.

Ed’s Story provides information and education resources related to dementia care.  Although specifically focussing on Lewy body dementia, the resources have been developed to be transferable to caring for people with any type of dementia. The resources are suitable for us by students in the health professions, educators, formal and informal carers.  

Users can access as much, or as little, of the provided resources as they wish. The home page shows a series of portals, which are modules addressing specific aspects of dementia care. Each module links to Ed’s journal, some with video vignettes, provides some background knowledge and includes teaching strategies for educators.  

Module 1 – Provides an overview of dementia and the burden of disease in the Australian context
Module 2 – Describes the experiences of patients, carers, family and friends
Module 3 – Specifically outlines issues pertaining to carers
Module 4 – Users have the opportunity to watch all of the video vignettes in one place
Module 5 – Learning resources and external links
Module 6 – Provides external links to providers of advocacy and support in the  community
Module 7 – Provides links and resources to access services, including emergency services
Module 8 – Users have the opportunity to read Ed’s journal in its entirety, read the reflections of family, friends and carers of people with dementia, and the reflections from the project team.


Introduction to Module 1

Module 1 discusses dementia in the broad contexts of disease incidence, different types of dementia, pathophysiology, presentation and progression.  It includes discussion about the burden of disease, highlighting the prevalence in our communities, the financial and social costs, demonstrating why this topic is a high priority for health departments, health workforces, communities and families.  It shows there is more to national and international health provider decision making than budget; the resulting ripple effect on families and communities is far greater than that.  It is therefore imperative that, in the spirit of person-centred care, that the experiences of patients, families and friends provide the background upon which planning for health service provision and workforce education is based.

The theoretical knowledge gained from this module is enhanced by additional learning opportunities. The content of this module is linked to examples in Ed’s narrative, activities and learning strategies to better understand the concepts.  

Journal excerpt and associated resources for learning and teaching -module 1

Journal excerpt Points to consider & suggested activities

Journal excerpt 1.1

The beginning 

Mary was on reception at the hospital when I went for treatment. I liked her immediately and eventually she agreed to go out. We courted, became close and I asked her to marry me. She said, "Speak to my father". I did. He grinned and said, "Ask her mother". We married, honeymooned in the mountains, and settled in the city until I finished my studies. We were very happy and so much in love. We asked ourselves, do good times like this last forever? Later she felt ill and consulted her doctor who told her she had miscarried. I was dismayed - would we ever have a family? Cheerfully she replied, "Of course, we will! Don't worry - everything will be OK". And so it proved to be. We reared four healthy children and enjoyed the journey. As the children matured, she build [sic] a career and travelled within Australia and overseas both professionally and socially. She led an active and rewarding lifestyle. We both looked forward to a satisfying retirement.

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?

Journal excerpt 1.2

She drove to the medical centre for a routine visit.  Her doctor, noticing she was disoriented, suggested further tests.  Eventually, she was diagnosed with Lewy Body Dementia.

Our lives were to change dramatically.  She was gradually to lose her cherished independence - could no longer drive, required assistance with personal care and other activities at home and in public.  Luckily, she retains her cheerful nature, wry sense of humour and full recognition of people and places.

Upon becoming a carer, major changes took place in my lifestyle. –I’m not resentful - not much anyway - because I believed I owed much to Mary - a loving wife and devoted mother to our children for over 50 years. I wanted to repay her for her kindness and provide care to help soften the problems arising from her dementia.

Dementia has been described as a 'long goodbye'.  Tonight we will be close.  We'll talk, recall past experiences, sleep and dream. Tomorrow we'll wake together to another beautiful day.  We are so fortunate.  We know now that good times do last forever.

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?

Journal excerpt 1.3:

Friday, 7 November 2008
Mary having a lot of delusions:

Wants to go home.

"Lewy's" men (up to three in room) and watching her.

Asks at bed-time "Which bed is she going to sleep in tonight?" Pictures still being shifted about (by "Lewy")

7 February 2009
Mary 'sat down' on way to shower. Going to use shower chair with wheels in future. Mary, Jess and I went to lake for walk and lunch.

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

Journal excerpt 1.4:

8 February 2009
Using shower chair. Seems successful.

10 February 2009
Mary has reached 'new' stage in her decline. 

26 February 2009
Mary very tired.  Quieter and reflective. Appears to be 'depressed'. Having more difficulty in speaking. Getting hard to understand. Mobility not good.

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?

Journal excerpt 1.5:

Thursday, 12 March 2009
Collected (urine) specimen and tested at Doctor’s surgery. Positive - put her on antibiotics for 7 days.

Monday, 16 March 2009
New behaviour: Hallucinations all night and early morning. Up six times. Incoherent most of the time. Aggressive.

17 March 2009
Mary hallucinating again all night.  One episode involved a snake and Mary inflicted a tear on her lower arm.  Dressed in a waterproof cover. Mary [sic] hallucinations cover a wide field of imagination. Having great difficulty in swallowing tablets. Taking liquids OK.

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

Journal excerpt 1.6:

Tuesday, 28 April 2009
Agreed: Anti-biotics cease.  Not having any effect and continuation could cause side effects and diarrhoea.

Discontinuing feeding by cannula, except potassium. Feed subcutaneously into muscle in mid-body. Continue oxygen but finish feeding in 1 to 2 days.

Mary not alert enough to feed by mouth. Monitor, and if Mary becomes more alert, feed by mouth.  Move to single room. Unlikely Mary will leave hospital. End will come any time from days to weeks. Mary alert this evening – strong grip; trying to speak, moving arms, etc.

1.6 Suggested Activities:

High-fidelity scenario:

Simulation of Nurse-led therapeutic communication with Ed and family

Journal excerpt 1.6:

Tuesday, 28 April 2009

Agreed: Anti-biotics [sic] cease.  Not having any effect and continuation could cause side effects and diarrhoea.

Discontinuing feeding by cannula except potassium. Feed subcutaneously into muscle in mid-body. Continue oxygen but finish feeding in 1 to 2 days.

Mary not alert enough to feed by mouth. Monitor and if Mary becomes more alert, feed by mouth.  Move to single room. Unlikely Mary will leave hospital. End will come any time from days to weeks. Mary alert this evening – strong grip; trying to speak, moving arms, etc.

1.6 Suggested Activities:

High-fidelity scenario:

Simulation of Nurse-led therapeutic communication with Ed and family

Journal excerpt 1.7:

The Goodbye

We put Ma to bed as usual on the night of … April 2009.  Ma walked slowly from the lounge room, down the hallway to her bedroom asking as she did 'where am I going? Where am I sleeping tonight?'  We gave our usual reply 'In your bedroom where you always sleep'.  Satisfied, Ma snuggled comfortably between the sheets as we hugged and kissed her goodnight.  She smiled and said 'thank you' and looking peaceful and contented she dozed off.  Little did we know that these were to be the last words we would speak.

Next morning I prepared her medication, 'Lewy medication' she called it, and took it to her bedside announcing my presence with a cheery 'Good morning, how did you sleep?' Ma didn't stir; she seemed to be sleeping soundly.  I decided to let her sleep until S., the carer, arrived.  We were unable to wake Mary and decided to give her a bed-wash and change of pull-up pants.  Nurse visited and suggested Mary go to hospital by ambulance.  I consulted Dr N. J. who agreed. In hospital Mary had various tests - blood tests, X -rays, urine etc and placed on drip and given oxygen.  Further tests tomorrow.  We advised family of Mary's situation and then O., K. and M. - visited this evening.

A-A planning to come to Canberra from Sunshine Coast.  I discussed further treatment with Dr D. E., including what action to take if any possibility of recovery passes.  I expressed some surprise to be having this discussion at the time.  Dr D. explained that this was routine as it was preferable for the medical team to know the thoughts of the family when commencing normal treatment regime.  Dr D. explained that it could be days or even weeks before a decision needs to be made. 

For the rest of April, Mary remained in Canberra Hospital under treatment but showed no signs of recovery.  Many friends visited daily.


Journal excerpt 1.8:

On Saturday, 2 May 2009 Mary passed away peacefully at 11 am.  I was present and A-A., M, O., and K. soon arrived.  We stayed ‘til 2 pm except M. who stayed longer.  K. began funeral arrangements. As an organ donor Mary's eyes were accepted for research purposes.

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?


1.8 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?


1.9 Suggested Activity

Jigsaw classroom:

What does the research say about mourning and grief?

Develop some strategies to use in the clinical setting?