April 13, 2018

Young onset dementia : a guide to recognition, diagnosis, and supporting individuals with dementia and their families and other books


*These resources and eRsources are available for loan to members of Dementia Australia NSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au you can also subscribe to our younger onset dementia and ME blog for more updates on younger onset dementia 

Young onset dementia : a guide to recognition, diagnosis, and supporting individuals with dementia and their families




Providing key information and insight into the experiences of people living with a diagnosis of young onset dementia, this book will increase the knowledge and skills of health and social care professionals in the early recognition, diagnosis and support of young people with dementia and their families.The book explores the experiences of people living with a diagnosis of young onset dementia through detailed case studies, and gives learning points to implement in practice for the better provision of appropriate support and care. It explains the need for adapting services which are often designed for older people, and how the complicated diagnostic process can lead to misdiagnosis among younger people. Key issues are considered, including at-risk groups, work and dealing with potential loss of employment, changes in personal and family relationships, readjusting life expectations and plans, and social isolation.


Coping with early-onset dementia

Younger people with dementia face a number of special challenges. Although they have a diagnosis of dementia, they may still be working and have dependent children and family commitments. Also, they may be physically fit and find it not only to deal with losing their mental faculties, but also the stigma attached to the condition. Consequently, this guide is designed to help them cope with their condition.
Young onset dementia : care needs & service provision


Young onset dementia : care needs & service provision
by Christian Bakker

The objective of this thesis was to study different aspects of the caregiving process in young onset dementia. The NeedYD-study is the first prospective study investigating the course of young onset dementia and exploring care needs of both patients and caregivers. The thesis focuses on theree main research questions:
-What are the care needs of young onset dementia patients?
-What are the consequences of unmet care needs on the course of neuropsychiatric symptoms and health related quality of life in YOD?
-What factors are related to the use of (in)formal care and institutionalization in community dwelling young onset dementia patients?


* Highly recommended.
 When Dad comes home with a camera, one of those old cameras that takes film which needs to be developed, the family, Mum and their son, watch on. He seems to be taking photos of things which have no inherent interest. There are no people in them, they are of things and places around the house. Photos of his study, of the table at breakfast time, his coffee cup, the clothesline, the bus shelter. He takes roll after roll of film to the developer in the city, bringing the photos home to stick on the window.
The boy and his mum ask him why he doesn't take photos of them, but he doesn't answer.
They find that he has put things in the cupboard that shouldn't be there, and puts the hammer in the fridge, so the reader begins to understand that this man is showing signs of dementia.
 The family receives a parcel in the post with his camera in it and one undeveloped film. On getting it developed they see what he was trying to show them, the family he wants them to remember.
This poignant tale of a family coping with dementia will resonate with many children in the class or at home.
They may have an older relative with signs that this disease is taking its toll, or may have seen it in someone younger, the book showing that there is no age barrier to this disease.
The illustrations are wonderful, showing the family in their house and all the things which will remind them of their missing father and husband. All around the house are things which he used and the photos of things important to him alongside the photo of him with his family.
His award-winning short fiction and non-fiction has been published in national and international anthologies, in addition to being showcased at national writers’ festivals.

Ebooks to download and read include:
  • On Pluto - eBook

    On Pluto

    eBook
  • On Pluto
    Greg O’Brien, an award-winning investigative reporter, has been diagnosed with early-onset Alzheimer's and is one of those faceless numbers. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. O’Brien is a master storyteller. His story is naked, wrenching, and soul searching for a generation and their loved ones about to cross the threshold of this death in slow motion. On Pluto: Inside the Mind of Alzheimer’s is a trail-blazing roadmap for a generation—both a “how to” for fighting a disease, and a “how not” to give up!
This book is a vivid account of the author's experiences living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband, Paul, she continues to lead an active life nevertheless, and explains how professionals and caregivers can help.

April 11, 2018

Resources to use with groups of people with dementia


*These resources and eRsources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au

Proven to enhance wellbeing, posture, breathing and sleep, and reduce anxiety and agitation, this programme shows how yoga can be adapted to benefit people with dementia.Based on the findings of a pilot therapeutic yoga programme for people with dementia in care homes, this book offers substantial yoga sequences, breathing exercises, meditations and mindfulness exercises for improving symptoms associated with dementia. It offers an innovative Reminiscence Yoga approach, which uses sounds, music, guided imagery and familiar actions to stimulate memories. The book demonstrates the many benefits of yoga for people with dementia, and describes the ways that each yoga exercise can be adapted for people of different abilities.


Qigong for Wellbeing in Dementia and Aging
Qigong is the centuries-old practice of moving vital energy (Qi) through the channels of the body, known as meridians, to promote vitality and health. Stephen Rath details current research and Traditional Chinese Medicine theory to show how Qigong practice can support cognitive functioning, as well as emotional and physical wellbeing, in people with dementia. Qigong for Wellbeing in Dementia and Aging presents a set of accessible Qigong exercises and breathing techniques adapted specifically for older people who may be frail or have limited mobility, which address specific symptoms associated with dementia. These include exercises for the hands and feet, exercises for releasing emotions through the Five Animal Sounds, seated exercises, and facial exercises. The exercises, contributed by the Natural Healing Research Foundation from their Senior Exercise Class in Hawaii, are presented with clear explanatory illustrations. The final part of the book describes the Chinese understanding of nutrition as an essential underpinning of good health into old age, and provides health-giving food and drink recipes for people with dementia based on these principles. There is also a helpful chapter on practicing Qigong to protect against caregiver burnout. This will be an invaluable book for care professionals, nurses, activity coordinators, and physical therapists, as well as people with dementia and their families.


Music remembers me 
Connection and wellbeing in dementia brings to life the experience of people living with dementia and their interaction with music through an Australian-first project involving more than 700 aged care residents.
While a diagnosis of dementia may be stressful and challenging, this book equips people living with dementia and those who support them with positive, meaningful ways of using music to enjoy experiences together-maximising feeling and connection.
Music remembers me includes moving stories from music engagement - along with practical advice and tips about introducing music into daily care. Author Kirsty Beilharz has woven together fascinating insights into music, our brains and dementia with practical advice on music engagement. This ground-breaking book is written with the general reader in mind and is certain to be a vital resource for supporting people living with dementia in Australia and around the world.
*lists of music include classical; the crooners; folk and country early rock and roll and R&B and pop and rock !

Singing Groups for People with Dementia : A Guide to Setting Up and Running Groups in Community and Residential Settings
everything you need to know about setting up and running these includes;
Chapter One: What is so good about music?   3
Chapter Two: What is so good about music for people with dementia?  7
Chapter Three: What do you need to know about dementia?  11
Chapter Four: Preparing yourself   21
Chapter Five: Preparing others  22
Chapter Six: Roles of people involved   29
Chapter Seven: Identifying a suitable venue   33
Chapter Eight: Fundraising   36
and much much more ...
also checkout resources available from our eLibrary






March 30, 2018

Reading carer’s stories and well researched novels can be inspiring and informative for carers


*These resources and eRsources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au

new books for carers




Rain birds 
Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present.

Nearby, conservation biologist Arianna Brandt is involved in a project trying to reintroduce the threatened glossy black cockatoos into the wilds of Murrungowar National Park. Alone in the haunted bush, and with her birds failing to thrive, Arianna’s personal demons start to overwhelm her and risk undoing everything.

At first, when the two women’s paths cross, they appear at loggerheads but – in many ways – they are invested in the same outcome but for different reasons.

Ultimately, unexpected events will force them both to let go of their pasts and focus on the future.

review by a carer
"I have just finished reading 'Rain Birds' by Harriet McKnight. I really enjoyed it, and could relate well to the carer - Pina - in the novel. I appreciate your observation along the lines that sometimes we can get more from fiction than reading a biographical /autobiographical account."


Somebody I Used to Know

What do you lose when you lose your memories? What do you value when this loss reframes how you've lived, and how you will live in the future? How do you conceive of love when you can no longer recognise those who are supposed to mean the most to you?

When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run - the various shades of her independence - were suddenly gone.

Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know gets to the very heart of what it means to be human. A phenomenal memoir - it is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.


The gingerbread house

Recently-redundant Tess is keen to start work on a novel and needs to make it work. She and her freelance journalist husband Donn desperately need the money and three weeks looking after Donn's aged mother while the carer takes a break seems like an opportunity to get started. She knows it'll be tough looking after Eleanor, who has increasingly severe dementia, but she'll surely find some time for herself, won't she? Arriving at the isolated country house their daughter Katia has named The Gingerbread House, a tearful Tess begins to realise that she has a far more difficult few weeks ahead than expected. Her mother-in-law is now in need of constant attention and Donn can't help as he has to stay in town for work. Narrated by Katia - their only child - who prefers not to speak but observes everything, The Gingerbread House is a deeply moving and compassionate story of a family and its tensions and struggles with her grandmother's dementia, as the reclusive teenager describes the effect it has on everyone in a strangely detached but compassionate way. But as the situation regarding her grandmother's care unfolds, a family tragedy even closer to home reveals itself.
reviews 

'Charming, funny, tender and sad, and devastatingly readable. I will never forget it.' 
'Frank and incredibly moving.' 

Alzheimer's - life in reverse
After graduating with honours from Sydney University, Philip Minter undertook post graduate studies in America, leading to a Ph D. At about this time, he was introduced to his future wife, Mary, and after a brief courtship, they married in January 1959. The book then tells the story of their life together as they followed their careers, including the arrival of their two daughters, Elizabeth and Margaret in Australia and USA. All went well for several years until Mary began to show an early sign of dementia – forgetfulness. Other symptoms followed and she was diagnosed with Early Onset Alzheimer’s Disease in the mid-1980s. The effects and progressive nature of this pernicious disease are then carefully documented until Mary’s eventual demise, some 15 years later.
The great value of this book lies in its forthright telling of the relentless nature of Mary’s ever worsening symptoms and the loving care needed to make her as comfortable as possible. It is written in a straightforward manner with short chapters that describe the neurological effects of Alzheimer’s disease, and in passing, informs the reader much about life in America at that time.
Ebooks to download and read include:
  • On Pluto 
    Greg O’Brien, an award-winning investigative reporter, has been diagnosed with early-onset Alzheimer's and is one of those faceless numbers. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. O’Brien is a master storyteller. His story is naked, wrenching, and soul searching for a generation and their loved ones about to cross the threshold of this death in slow motion. On Pluto: Inside the Mind of Alzheimer’s is a trail-blazing roadmap for a generation—both a “how to” for fighting a disease, and a “how not” to give up!
  • New York Times Bestseller
    Emmy-award winning broadcast journalist and leading Alzheimer’s advocate Meryl Comer’s Slow Dancing With a Stranger is a profoundly personal, unflinching account of her husband’s battle with Alzheimer’s disease that serves as a much-needed wake-up call to better understand and address a progressive affliction.


    When Meryl Comer’s husband Harvey Gralnick was diagnosed with early onset Alzheimer’s disease in 1996, she watched as the man who headed hematology and oncology research at the National Institutes of Health started to misplace important documents and forget clinical details that had once been catalogued encyclopaedically in his mind. With harrowing honesty, she brings readers face to face with this devastating condition and its effects on its victims and those who care for them. 


    Detailing the daily realities and overwhelming responsibilities of caregiving,Comer sheds intensive light on this national health crisis, using her personal experiences—the mistakes and the breakthroughs—to put a face to a misunderstood disease, while revealing the facts everyone needs to know.

    Pragmatic and relentless, Meryl has dedicated herself to fighting Alzheimer’s and raising public awareness. “Nothing I do is really about me; it’s all about making sure no one ends up like me,” she writes. Deeply personal and illuminating, Slow Dancing With a Stranger offers insight and guidance for navigating Alzheimer’s challenges. It is also an urgent call to action for intensive research and a warning that we must prepare for the future, instead of being controlled by a disease and a healthcare system unable to fight it.
  • Where the Light Gets in : Losing My Mother Only to Find Her Again

    Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the "Father of the Bride" movies, the calculating Peggy Kenter on "Nashville," or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. "Where the Light Gets In" tells the full story of Linda s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, "Where the Light Gets In" is a heart warming tribute to the often fragile yet unbreakable relationships we have with our mothers."
eAudiobooks
  • When your parent becomes your child : a journey of faith through my mother's dementia [available in book or CD]
    by Ken Abraham
    As he chronicles his own mother's degenerative condition, New York Times best-selling writer Ken Abraham educates while offering inspiration to help readers cope with and manage their family circumstances. With humor and spiritual reminders of God's command to honor our parents, Abraham encourages readers through often-difficult responsibilities. And though in most cases patients will not recover this side of heaven, he suggests many practical things that families can do to make the experience safer, kinder, and more endurable for everyone involved.

March 28, 2018

Journal of dementia care Vol 26 No 2 March/April 2018

*These resources and eRsources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au


  Loudly but silently finding and sharing joy
Mask theatre company Vamos  is running and Arts Council- funded project which puts people with dementia  and their carers at the centre of its work p 12-13

Five-star hospitality and comfort with care 
A central London care home for people with dementia  provides a luxurious setting for it’s residents
It’s more like a hotel for people with dementia than a care home, it also runs a day club and there is a high demand for this p 14-15

Living in Carerville 
Linda Vipond thought she had a sound  knowledge of caring as and experienced care manager for older people. But  it was only when she became her mum’s carer that she really began to understand….she discovered the need for patience to the umpteenth degree – and realised how utterly exhausting it was to manage night-times. She believes that after her experiences she will be far more understanding of the physical and mental tiredness  endured by all.p 16
New tech keeps an eye on patients
Camera based technology is being used to monitor the health of dementia patients in a Midlands hospital – the project’s aim is to enhance and not hinder or replace nursing care.  P 20

Involving young players in football reminiscence 
Sporting reminiscence can have a significant impact on wellbeing, but see what happens when the experience becomes intergenerational…Activity programme
Lunch in café with young footballers
Young footballers  discuss who people played for which famous players did they play with…
Young footballers give 20 minute display of skills  to all day hospital participants
Powerpoint picture show of persons career presented to all participants
Quiz questions on football, sports, music  and memories …
Tea and cake  p. 22-24

Challenging expectations of life with dementia 
Most home care homes in Scotland  are doing well with implementing  the standards of care for dementia. However there are key areas where improvement is still needed …dementia standards
I have the right to a diagnosis
I have the right to be regarded as a unique individual  and to be treated with dignity and respect
I have the right to access a range of treatment, care and supports
I have a right to be as independent as possible and be included in my community
I have the right to carers who are well supported and educated about dementia
I have the right to end of life care that represents my end of life care that respects my wishes

What they found58% provided good or better care and 42% no better than adequate
65% of people are able to access the garden independently 45% of care homes, staff reported that staffing levels frequently prevented people from accessing the  community at least once a week and it was seen that a wave of improvement is often generated when a specific area of care is examined in detail by a focused inspection! ….p25-27

Understanding the barriers facing BAME communities 
What are the barriers confronting ethnic minority communities attending memory services?
Service awareness
practical barriers
such as language / interpreters
travel – may not use public transport or travel outside of familiar environment
Money – they think they need to pay for interpreters
Gatekeeper barriers
Registration – not registered with  GP
Referrals  - not referred on from a GP
Disclosure – family won’t disclose all of difficulties due to stigma
Implications for practice
Engagement
Pathway to memory services
Dissemination

2 themes
Causes of dementia – sub theme
a normal part of ageing – seen as a character flaw
Fear and respect – being disrespected and undervalued –feel safer in own culture
Generational differences – don’t want to be a burden
Stigma – mad, crazy  stupid ….p28- 31

Peer support, expert help and social interaction

How memory matters - education and advice courses was experienced by participants – key findings
Memory matters course provides education and advice for people soon after diagnosis
The course provide an important combination of reassurance through peer support, social interaction and professional advice
The course is having a positive impact on how participants live and that their wellbeing is substantially enhanced
This is often the first time that people have had easy access to this sort and it is vital to relieving  the many fears they experience
The course provides support to start difficult and sensitive discussions about planning ahead, which some go on to do
Some interviewees said they would have liked a separate carer sessin to allow for more openness in discussions
Other interviewees said they would like the course run more regularly so that more people could attend… p 32-34
Book review


Facilitating Spiritual Reminiscence for People with Dementia: A Learning Guide

Spiritual reminiscence is a way of communicating that acknowledges the person as a spiritual being and seeks to engage the person in a more meaningful and personal way. This practical guide teaches carers how to facilitate engaging and stimulating spiritual reminiscence sessions with older people, and particularly with people with dementia. After reading the guide, carers will understand the many and varied benefits of spiritual reminiscence, and will have developed the skills, confidence and communication techniques needed to support people with dementia in this activity. The authors present in accessible terms the evidence-base to support the benefits of the approach and provide clear, step-by-step instructions for facilitating spiritual reminiscence sessions, including useful suggestions for ideas and questions to stimulate discussion. Intended to be used either as a self-learning tool or as the basis for staff training sessions, this will be a valuable resource for staff in care homes and day centres, activity coordinators, pastoral and spiritual care professionals, clergy and spiritual leaders.







March 24, 2018

new journal - Australian Journal of Dementia Care vol 1 Feb/March 2018

*These resources and eRsources and articles are available for loan to members of dementia Australia library NSW - if you would like to reserve them please email the Library on nsw.library@dementia.org.au




COVER STORY

Bedtime to breakfast and beyond: sleep program boosts daytime engagement
What started as a program to improve the sleep of people with dementia at one Life Care site has led to a fundamental shift in how the South Australian aged care provider implements and embeds person-centred care for all residents with dementia, not just at night but 24 hours a day. Deborah Muldoon explains… key changes to night time practices includes
Call bells that vibrate
Ring tones on phones turned down
Lights dimmed
Rooms changed to enhance seeing of commode/toilet and overnight drinking
Clinical reviews now when resident wakes up – not at 6am
TV and small group activities offered for residents in a separate room
Soft music plays….p 21-24




Night time care : a practice guide
This accompanying practice guide supports staff through implementing changes that will improve the lives of people with dementia and those who care for them at night.

 


Providing good care at night for older people : practical approaches for use in nursing and care homes 
"Night staff have to provide the same level of person centred, individualised care as day staff. Their primary task is seen as the promotion of sleep. This can often mean that they feel compelled to get people back to bed as quickly as possible. Often, however, residents need, time, food, activity, and TLC as well as an opportunity to talk and discuss, particularly their fears and worries."
Night time activities include --  calm gentle nights by the radio  --  a walk in the evening air --  having a snack/ nightcap --  reading aloud

The experiences and needs of residents and patients in nursing and care homes are very different at night, and this is particularly true for those with dementia.

The authors look at all of the issues that are particularly pertinent in caring for older people at night, including nutrition and hydration, continence, challenging behaviour, medication, night time checking, pain management and end of life care. They also look at the impact that working at night has on care staff, and offer practical suggestions to help them to safeguard their own health. The final chapter provides a set of night time care guidelines for inspectors that can also be used by managers to evaluate night time practices in their homes.

This book is essential reading for night staff and their managers and employers, as well as inspectors of services, policy makers, and anyone else with an interest in the provision of care for older people.
*  also available as an eBook



Investigating the phenomenon of time-shifting

Anecdotal evidence suggests that time-shifting is a fairly common phenomenon in people with dementia, but no previous studies have analysed it in terms of occurrence and frequency. Laura Gibbons, Gayl Keddie and Ian A James introduce the concept, in which memories from the past are perceived as relevant in the present, and discuss what care home staff say about its nature and frequency
 


New DVD
Introduction to validation : communicating with very old people with Alzheimer's and other dementias
Learn the essential principles and techniques of the Validation method through demonstrations by Validation originator Naomi Feil and master Teacher Vicki de Klerk-Rubin in this short training DVD. The powerful communication techniques can be used by medical, nursing and paraprofessional staff as well as social workers, care managers, and occupational and recreation therapists to connect with disoriented older adults, relieve their distress, and improve care

Books on Validation therapy include:
The validation breakthrough : simple techniques for communicating with people with Alzheimer's and other dementias
Validation is a practical way of communicating with and managing problem behavior in older adults with Alzheimer's-type dementia. It helps reduce stress, enhance dignity, and increase happiness. Since its inception in 1989, Validation has helped thousands of professional and family caregivers improve their relationships with residents and loved ones with dementia. Caregivers who use these techniques validate older adults' expressed feelings, rather than focusing on disorientation and confusion. In this book you'll learn how to re-create relationships between confused older adults and their caregivers, be caring and non-judgmental understand and handle challenging behaviors interpret non-verbal cues in a way that promotes communication implement -
  • Residents express less anger and anxiety, decreasing the need for chemical and physical restraints.
  • Residents communicate more and exhibit an increased sense of humor
  • Residents often move better and experience an improved sense of self-worth.
  • Staff members express a greater sense of fulfillment at work and feel better prepared for handling difficult situations.
  • Staff members demonstrate a higher level of camaraderie
  • Families visit more often.


PALZ: supporting professionals with Alzheimer’s

Offering a corporate-style social forum for people in the early stages of Alzheimer’s disease, PALZ is preparing to expand across Australia and internationally. Cathy Roth reports

Join the ACcORD collaboration

Rob Sanson-Fisher and colleagues from the ACcORD program are inviting Australian health care providers and consumers to join the collaboration to improve well-being and health outcomes for people with dementia and their carers

Dementia and sight loss: a challenging combination

Sight loss affects tens of thousands of people with dementia, but with the right understanding, education and awareness, they can be supported to live well. Paul Ursell and Gemma Jolly show how one influential committee is making a difference
List of what to do includes making the most of existing sight
Finding out more about the eye condition
Regular eye examinations
Improved communication- eg use introductions
Tell the person if you are moving away!
Adapting activities
Consider technology that might help… p. 11-12

The View From Here

Fred Graham, Sandra Jeavons, Liz Miles and Elizabeth Beattie introduce The View From Here, an evidence-based online training package suitable for all Australian hospitals to use in preparing their staff to provide quality care for patients with dementia…topics include:
  • Neuropathy
  • Delirium and delirium superimposed dementia
  • Communication strategies
  • Information gathering and bedside tests
  • Approaches to pain assessment
  • Activities for the acute care setting
  • The environment – sensory, physical and social
  • Care planning and interventions p. 13-18

 books include :

Enriched care planning for people with dementia : a good practice guide for delivering person-centred care
by May Hazel, Paul Edwards and Dawn Brooker
The correlation between `disengagement' and illness in people with dementia living in long-term care settings is becoming more widely recognised, and developing and adapting front-line staff responses to the changing needs of individuals is a crucial factor in addressing this problem. This book presents a complete practical framework for whole person assessment, care planning and review of persons with dementia or signs of dementia (including those with learning disabilities) who are in need of, or already receiving, health and/or social support. The book provides photocopiable assessment forms, guidelines for carrying out the assessment, and suggestions for tailored interventions based on the profile that emerges from the assessment process. The authors also include a clear explanation of the five theoretical components of dementia that are considered in the assessment: health, biography, personality, neurological impairment and social psychology. This good practice guide will provide a step up to the challenge of providing person centred care as a minimum standard rather than just an ideal. Care workers in residential settings and social workers assessing clients for their support requirements will find this an essential resource.


A tale from a dementia champion

Tim England shares his experiences of creating a grassroots education campaign to transform community attitudes towards dementia… 18-19

‘It ain’t what you do, it’s the way that you do it’

Pre-assessment counselling is helping to minimise anxiety surrounding the diagnostic process. Anna Buckell and colleagues discuss findings from their early intervention service…includes pre- assessment counselling – getting to know the person to help build a trusting relationshipand be responsive to the person’s needs – needs highly skilled team …p 30

Human rights, disability and dementia

Dementia Alliance International Chair Kate Swaffer explains the significant effort that will be required to implement the WHO’s Global Dementia Action Plan and why human rights and the recognition of dementia as a disability must be reflected in all regional and national dementia strategies and plans… includes recognising dementia as a disability
a new pathway to  diagnostic support
educate helath care staff
p 25-28





‘What the hell happened to my brain? Living beyond dementia’ by Kate Swaffer 



“Kate Swaffer is phenomenal. Diagnosed with frontotemporal dementia before the age of 50, she has been a leading advocate for dementia ever since, with a much-followed blog site https://kateswaffer.com/, addresses at numerous conferences and the best-selling book whose title heads this blog post. 

She is a member of the World Dementia Council and co-founder and chair of Dementia Alliance International, the first global organisation exclusively for people with dementia. It is entirely fitting that she is the South Australian nominee for Australian of the Year 2017 and of course we hope she wins. Last year’s victor was Chief of the Army and in 2015 the winner was a campaigner against domestic violence.

The book makes interesting reading, with some biographical material, some very illuminating descriptions of the difficulties Kate has with memory, words and so on, and then a lot of material aimed to support people with dementia in their lives but also a call to action for people with dementia to be more involved. 



Overnight respite: home-grown and developed together

David Panter introduces ECH’s new purpose-built overnight respite centre in Adelaide, developed in consultation with carers and people with dementia … insights
Choosing to care
Control and conflict
A shrinking world
Vulnerable partnerships
One size does NOT fit all
Physical well-being and safety
Need for overnight respite…lounge room, suitable  furnishings, guest rooms, ensuites, …p29-31



Getting the most out of respite care: a guide for carers of people with dementia

If you are supporting someone with dementia, you are important. You are helping that person to continue living in the community with dignity and love. However, to keep doing this, you need to look after yourself and sometimes that means taking a break. Making the decision to use respite care is a hard one, but it is one that is shared by many carers like you. While there are many resources available to give you information about the care system, this resource is designed to help you in your decision-making about respite by providing you with information from the carer’s perspective. In here you will find stories about carers and their experiences of respite care, as well as advice and tips to help you make the most of your respite experience.

At the back we have included contact details for organisations and services that can help you with information about accessing respite care when you are ready to make the decision to use it.

The idea for this guide began after reviewing the results of a national survey of over 300 carers of people with dementia. In that survey, they were asked about their experiences and opinions of respite care. The responses to this survey provided information of great potential use to other carers – and so this guide was begun.

Support for carers a practical guide to services for families and friends of people with dementia

This guide has been developed as a helping hand for carers and the loved ones they care for. As a carer I found it quite difficult to find what services were available at the different stages of the dementia journey, so the guide is put together in a roadmap format. This will help carers to access the services when they are needed and to help with future planning. It has been made possible through the generous support of a carer and with the assistance of the Alzheimer’s Australia National
Consumer Advisory Committee. They join me in hoping that the information within these pages help smooth the journey for you and your loved ones

Research focus – investigating the phenomenon of time-shifting
-          Is a fairly common phenomenon in people with dementia – therefore may need reorienting strategies, meeting the needs, distraction and therapeutic lies p 32-34
-       
         Support for surrogate decision makers p 35
-        
          Implementing Montessori programs p. 35
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      Improving end-of-life care p 36


A good life to the end : taking control of our inevitable journey through ageing and death

Ken Hillman is a practising intensive care specialist who is a Professor of Intensive Care at the University of New South Wales. He trained at St Vincent's Hospital in Sydney and worked in London for 6 years before returning to Australia as Director of Intensive Care at Liverpool Hospital in Sydney. Professor Hillman is internationally recognised as a pioneer in the introduction of the Medical Emergency Team which recognises and responds to seriously ill hospital patients early in their deterioration, which has been adopted in the majority of hospitals in the United Kingdom, United States of America and several European countries. He is working closely with the Clinical Excellence Commission on rolling out the Medical Emergency Team to every hospital in New South Wales. He is also passionate advocate of improving the management of the dying patient in acute hospitals.