Dementia Carer- Tips from a Mentor Carer Fast Track® Series Books 1-11 Compiled
Preface ISBN: 978-0-6488198-9-9
This series of eleven booklets presents new perspectives on being a carer for a person with dementia. These are practical tips and insights not published before. Each 10-minute booklet is designed to fit within the limited time resources of busy carers.
Five years ago, I started a Palliverse discussion with a contribution about my role as a carer for my wife, Carole with dementia. Carole died in 2019 when her cognitive abilities were no longer sufficient to maintain the routine function of vital organs. So Carole literally died of dementia which is not very common. Many patients die of injuries or comorbidity factors. We did the whole journey together. I resolved to write booklets to help other carers in the various stages of dementia. To have this done and published while memories were fresh, I gave myself a year (and used almost all of it). I published eleven brief booklets on Amazon in 2020.
1. Dementia Caregiver Survival
2. Tips For Newbie Dementia Carers
3. Tips For Communicating
4. Diagnosing Dementia
5. Take Genetic Testing?
6. “I’m FINE!” Coping with Anosognosia
7. Managing The Rage Stage
8. Selecting a Dementia Residence
9. Managing Dementia Placement
10. Coping with End of Life
11. Picking Up The Pieces
12. Manejando la etapa de la ira. Libro 7 de la serie
13. Bien gérer les accès de colère Volet 7
14. Dementia Carer- Tips from a Mentor (the compilation of 1-13)
I was born without my share of the Mother Teresa gene, but I learned a lot along the way and became a mentor on an international carer support forum. The booklets have been well received by carers, and professors of nursing wanted a compilation for use in education. The compilation is now used in nursing degree courses in USA, Canada and UK. In 2021, the compilation has become a teaching resource in Australian tertiary studies.
I should pass on to practitioners some observations I recently made to another carer, a Kiwi to whom I am a mentor. “The thing I continue to find remarkable is the reception of the booklets by leading practitioners. These booklets were written simply for fellow carers. They are brief because carers have little time. “The compilation was a hasty afterthought when the booklets first caught the eye of a nursing professor. It made no attempt at continuity or de-duplication or any kind of rewrite… just a stack of booklets under a title !” Your enthusiasm is very flattering to me. The simplicity of expression in my booklets was intended originally to reach fellow carers. It results in reviews like ‘raw’ and ‘frank’ and I guess it makes these resources stand apart from professional and academic literature on these subjects.You generously noted they are practical and experienced. Those are the attributes that appeal to other carers and that is where these booklets are truly innovative. Some ideas here have not found expression elsewhere in any form at all.So I am most grateful for your endorsement to some colleagues and I hope to continue to contribute. If you can forgive the literary shortcomings and the blunt presentation, I believe you will find more practical help and support in these booklets than elsewhere. I offer this resource (Word file attached) for use by Palliverse community members and for referral to carers of persons with dementia. The link follows to the publications from Amazon.
Motor Neurone Disease (MND) is a fatal neurodegenerative disease affecting some 2000 Australians. Average life expectancy from symptom onset is around 30 months.
Patients show different clinical phenotypes and rates of progression. Death usually results from ventilatory failure secondary to progressive respiratory muscle weakness and can be complicated by aspiration and respiratory infection. Offering respiratory support through non-invasive assisted ventilation (NIV) is considered best practice and can improve quality of life, symptoms and survival in selected patients. Patients usually begin using NIV overnight to improve sleep and daytime wellbeing. Over time, most will use it increasingly across the day, with some becoming NIV dependent.
Some patients who are dependent on NIV may ask that it be stopped. This is their right. It is not assisted suicide or assisted dying, it is withdrawal of medical treatment. Withdrawal of ventilation needs to be thought through and carefully discussed and planned to ensure that the patient is comfortable throughout the process and both staff and family/carers are supported.
This presentation gives the opportunity to hear from and ask questions of specialists in Neurology, Respiratory Medicine and Palliative Medicine about the management of NIV in MND and elective withdrawal of ventilation.
This survey explores the important social, occupational and mental health effects experienced by frontline health workers during the COVID-19 pandemic and beyond. As the pandemic has changed our social and work environments in many different ways, we want to hear the experiences of both frontline health workers who have and have not worked directly with people with COVID-19.
We will examine factors that promote good mental health and wellbeing, as well as risk factors for poorer mental health. Your input will inform recommendations to healthcare organisations and other professional bodies.
This study focuses on the experiences of medical, nursing, allied health, clinical scientists/physiologists/technicians, healthcare students and clerical staff who are working in the following frontline areas:
Hospital Aged Care
People working in other frontline health areas (such as medical or surgical areas) are also welcome to take part.
You do not need to have worked directly with people with COVID-19 to participate, as we would like to hear from all frontline health workers.
The caring@home (www.caringathomeproject.com.au) project is looking for palliative medicine specialists or trainees to review some resources for carers being translated into Vietnamese and Tagalog. caring@home has produced resources for carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines.
A company that uses accredited translators have been contracted to do the work but the project has also requested the opportunity to have a health care professional, who is a native speaker of the language, to review the translation and subtitles.
The work would be expected to be completed in May and June. They are able to offer a stipend for this work of $800 + GST upon receipt of an invoice.
The work is to review the following after they come back from the translating service:
Would you like to learn more about immunotherapy use and trials in cancer and in palliative care?
Immunotherapy Symptoms Clinical Trials: a new paradigm forum
Palliative, supportive and cancer care professionals are invited to attend the VCCC and CST co-hosted Immunotherapy Symptoms Clinical Trials: a new paradigm forum to progress clinical trials concepts in this evolving oncology field, recognise achievements, celebrate success and make connections for future directions.
Palliative care progress and achievements
The VCCC Building Trial Group Capability Program initial investment is focused on developing the palliative care group as a key priority area. The group’s development and activities have been underway for more than 12 months; it is timely to celebrate progress and achievements.
ANZSPM has received the following request from Dr AnnMarie Hosie, Post-doctoral Research Fellow, IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, University of Technology Sydney
MEDICAL PRACTICE IN THE TREATMENT OF DELIRIUM
You are invited to participate in a brief (10 minute) online survey about medical practice in the treatment of delirium.
The survey is for medical professionals working clinically in Australia.
Your time and insights towards better understanding of clinical practice for this common and serious medical problem will be greatly appreciated.
Dr Matthew Grant, a palliative care specialist, has published this article in The Conversation describing normal conversations in the course of his daily work.
I love the way he sensitively maneuvers through difficult conversations, allowing the patient to control the content of prognostic information given.
“Not everyone will feel comfortable talking about their future treatment plans like Keith. It’s important I allow Sharon to decide whether or not she wants to talk about a future where she dies, just as I shouldn’t necessarily dissuade Christos from smoking if it gives him pleasure.”
Kimberley Palliative Care Aboriginal Health Worker, Kimika Lee, has been recognised for her tireless work in the community by winning the Leadership and Innovation Award at the Western Australia Regional Achievement and Community Awards this month.
The local Yawuru Broome woman and mother of six said winning the award was a remarkable moment and one she never thought would happen.