October 27, 2017

be the change conference ...


if you are interested in the keynote speakers from be the recent conference be the change and would like to read up on what they talked about here is a list of some of their work available in the library.


To borrow or reserve this item please email NSW.Library@dementia.org.au




*Christine Bryden



Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46

…Some days all I want to do is give up the constant, exhausting struggle and stop trying to be normal. But I can't. It's not in me to walk away from a fight. I'll keep fighting and telling my story. Before I forget.'
Christine Bryden was only 46 when she was diagnosed with dementia in 1995.  Rather than accepting the passive role expected of a person with dementia, including Alzheimer’s, Christine wanted to become a survivor, and did not want to be labelled with dementia, as that implied that she was no longer a unique person, simply because one day, a specialist diagnosed her with an illness of cognition.




 Nothing About Us, Without Us!: 20 Years of Dementia Advocacy

Advocating for dementia for 20 years, Christine Bryden has been instrumental in ensuring that people with dementia are included in discussions about the condition and how to manage and think about it. This collection of her hard-hitting and inspiring insider presentations demands 'nothing about us, without us!' and promotes self-advocacy and self-reflection. Provocative and insightful, the pieces included in the book address issues that demand attention, and will change the way dementia is perceived, and the lives of people with dementia and their families.

 This collection of talks and presentations demonstrate the incredible progress that has been made as a result of her determination to make the world a more inclusive place for people living with dementia.' - Marc Wortmann, Executive Director, Alzheimer's Disease International
'Christine Bryden chronicles her two-decade journey living with a diagnosis of dementia, exploding myths and stereotypes along the way. Even in the face of cognitive struggles, Christine embodies personal growth, sharing her insights about the lived experience of dementia.' - G. Allen Power, MD, author of Dementia Beyond Drugs and Dementia Beyond Disease

'This should be compulsory reading for all professionals, people living with dementia and families affected by dementia. There is no us and them. There is only us.' - Professor Dawn Brooker, Director of the Association for Dementia Studies, University of Worcester, UK and author of Person-Centred Dementia Care




Who will I be when I die?
Christine Bryden


'Who will I be when I die?' is the beginning of the story of Christine Bryden's  emotional, physical and spiritual journey since her diagnosis.  Christine is living positively with dementia, and provides a unique insight into how it feels to be gradually losing the ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigour with which she is undertaking this battle in her life and her deep sense that her life continues to have purpose and meaning. Christine's approach to health and well-being has made this book a must for many people with dementia and their families.



Dancing with dementia : my story of living positively with dementia
Christine Bryden


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.

·        Kate Swaffer



What the Hell Happened to My Brain?

Kate Swaffer

Great Read about Living with Dementia

Reviewed by Professor Mary Radnofsky
… is the must-read, go-to reference for dealing with all kinds of dementia – from Alzheimer’s, Leukodystrophies, MS, or any neurological disorder. (It is also the best title of all books on the subject of dementia.)

This is the book you’d wished for, when you or a loved one was first diagnosed. It’s what we all need to finally help us articulate or understand how it feels to slowly lose what we’ve always taken for granted: the ability to multi-task, recall words, make decisions, manage money, organize our lives.  A former nurse, Kate had seen this many times. Then eight years ago, at age 49, she, too, was diagnosed.


Kate is living proof of the hope we can still have for a good life even when our cognitive skills change. You can meet her and many others living with dementia online through the wonderful “Dementia Alliance International (DAI), an organization she co-founded for Support and Advocacy of, by, and for People With Dementia. (Only people with dementia may join, and membership is free.)

If you have dementia, you’re not alone. There are over 47 million people on Earth with dementia. And there’s no shame in it. Read Kate’s book, go online to DAI, or attend a dementia conference, and you’ll meet some of the still-active people who’ve been living with dementia for 10-20 years. Doing that has helped me discover new ways to enjoy my own life again, eleven years after my first diagnosis. Yes, I, too, have dementia, and I’m still living a good life.

* Dawn Brooker

Person-centred dementia care : making services better with the VIPS framework
Dawn Brooker and Isabelle Latham




What is person-centred dementia care, and how can it be used to improve care for people from diagnosis to end of life? How can we improve services in people's own homes, in care homes, in supported housing and in hospitals? This substantially updated second edition considers recent developments in person-centred care, presenting refreshed guidelines for practice.
…describes how it has been applied in diverse service settings, and show how to put the model into practice. A new chapter dedicated to culture of care will help service managers to get to grips with this slippery concept, and includes important information on how to guard against neglectful practice. Case studies from the CHOICE programme, a research project on culture of care, demonstrate the key factors that are important for people living with advanced dementia and complex needs to live well.
Person-centred dementia care : making services better
Dawn Brooker

 


The term person centred care has been widely used, misused and ill defined. It is used frequently in the aims and objectives for dementia care services and provision, although in practice what lies behind the rhetoric can be questionable. This book gives fresh definition to the important ideas behind and the implementation of person centred care for people with dementia. Dawn Brooker explains the four key elements of person centred care that comprise the VIPS model: Valuing people with dementia and those who care for them ; treating people as Individuals ; looking at the world from the Perspective of the person with dementia ; and a positive Social environment in which the person living with dementia can experience relative well being. With an emphasis on practical application, Person Centred Dementia Care provides care organisations with clear, accessible guidelines on how to put the VIPS model into operation for effective care that is 'fit for VIPs'. Part 2 of the book comprises the VIPS organisational reflection tool, which care providers can use to assess how well they think they are doing at providing person-centred care.



·        Cameron Camp

Hiding the stranger in the mirror
By Cameron J. Camp




There is not us, there is no them, only we- It is my sincere wish that these stories will lead the reader to new ideas, new ways of thinking, and most importantly, a new attitude towards persons with dementia.
Cameron Camp uses stories that represent "cases" to be "solved" which are lessons for those dealing with the challenges posed by caring for persons with dementia.  
Many cases are followed by a "lesson learned" for the reader to take away and use,  for example a woman whose mother kept asking her the same question over and over discovered that spaced retrieval can be effective for working with repetitive questioning.  

Montessori-based activities for persons with dementia : volume 1 and  2
Cameron Camp






 A different visit : activities for caregivers and their loved ones with memory impairments
by Adena Joltin, Cameron J. Camp, Beverly H. Noble, Vincent M. Antennucci




This manual was created to help people have a different visit with relatives who have memory problems, such as those related to dementia. We hope that here you can find many activities that are right for you and your family members regardless of where they are in the course of dementia. We understand that every person with dementia is different. What works for one person may not work for another, and what works one day may not work another day. This manual is written specifically to you - all those who love family members dearly, but need some inspiration for how to better engage and interact with them. 

·        Prof Henry Brodaty





A Clinician's Field Guide to Good Practice: Managing Behavioural and Psychological Symptoms of Dementia (BPSD)

Dementia Collaborative Research Centre - Assessment and Better Care (DCRC-ABC) at UNSW Australia
The aim of this field guide is to provide initial points for consideration for clinicians in their role of assisting residential aged care facility staff, community care staff and family members caring for persons living with dementia, who present with behavioural and psychological symptoms of dementia (BPSD).

A guide for Family Carers dealing with Behaviours in people with dementia




Book Review  “ A guide for family carers dealing with behaviours in people with dementia” is a really good reference for both the therapist and the carer. It is a collaborative spiral-bound book from DCRC, DBMAS and circulated through Alzheimer’s’ Australia.
The overview gives a general understanding for the reader. Sometimes one needs more than just a brief explanation on each of the typical challenging behaviours and this book fills that need. 
Behaviours are listed alphabetically and separated for easy reference. Behaviours are aggression, anxiety, apathy, calling out, delusions and hallucinations, depression, sleep pattern changes, social inappropriate behaviours  and wandering.
This book is a good reference book while directed at family carers is appropriate for any staff member working with dementia clients. The diversional therapist is often asked about what activities can the family member or staff carer in the home can do with the person they care for. So it is essential to understand behavioural changes in a dementia client. The compact size and setting out makes it very portable. I recommend this resource to those who are carer support leaders in their
communities.

Each module of this family carer Guide relates to a specific behaviour or psychological symptom and includes:
* A description of the behaviour or psychological symptom and what it looks like in dementia
* Potential causes and when it is most likely to occur
* How it affects the person with dementia and others
* What can be done to help manage it
* An example of a family's experience with BPSD


Prof Henry Brodaty discussed dementia care mapping…

Dementia care mapping : experience and insights into practice 




If you need to learn more about Dementia care mapping or brush up on it- this is a great book to start with.
Dementia Care Mapping (DCM) is a system of careful observation to assess the impact of care from the perspective of the person with dementia.  Over the years DCM has made a major contribution to improving quality of care for people with dementia.  This book brings together important insights and experience. 

Prof Henry Brodaty discussed tailored activity programs …

Transcending dementia through the TTAP method : a new psychology of art brain, and cognition



The brain-stimulating approach known as Therapeutic Thematic Arts Programming (TTAP) has a proven record of improving the lives of people with dementia by increasing their engagement and functioning. Activities using the TTAP method can provide significant stimulation and integration of multiple brain regions; enjoyment, engagement, creativity, relaxation, and a sense of purpose for people with even advanced dementia. It has anan easy-to-follow framework that allows infinite variations on themes and personal interests; complete documentation for tracking and evaluation; opportunities for one-on-one or group programming...

·        Naomi Feil

DVD - Introduction to validation : communicating with very old people with Alzheimer's and other dementias
Naomi Feil



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…includes the clip she showed in her talk.

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.
·                      
Validation techniques for dementia care : the family guide to improving communication




Written especially for family members and friends caring for people with dementia, this practical guidebook offers a solution to commonly faced communication and relationship difficulties. Developed by social worker Naomi Feil and widely practiced around the world, the Validation approach provides caring and empathetic techniques to support meaningful communication and interaction with people with memory impairments. This hands-on resource gives family caregivers all the information and guidance they need to successfully implement proven Validation techniques and enjoy resulting benefits such as -- reduced challenging behavior -- improved communication -- lower levels of stress and anxiety in both caregivers and older adults -- more satisfying relationships. 
In addition to background information about dementia and the principles behind Validation, the book includes detailed, illustrated explanations of specific verbal and nonverbal communication techniques. Realistic case studies demonstrate the approach in action in many different relationships, including husband/wife, parent/child, and grandparent/grandchild.
Caregivers who adopt Validation will learn how to break through the silence and pain of withdrawal and interact with their loved one with greater respect and compassion. Start re-establishing connections and improving relationships today with Validation Techniques for Dementia Care.

 Applying holistic skills in dementia care



This books contains:  The nurse and the 'unit of care' relationship -- The art and skill of dementia care -- The grief associated with dementia -- Validation therapy -- Palliative care - A medical perspective -- Pallative care - integrating heart and science -- When to commence palliative care in aged care -- Physiotherapy in palliative care.

·         Susan Kurrle

Physical comorbidities of dementia
by Susan Kurrle, Henry Brodaty, Roseanne Hogarth



…To date treatment has focused on cognitive and behavioural symptoms and their management, but the physical side has been neglected.

Physical comorbidity is extremely common in people with dementia and leads to excess disability and reduced quality of life for the affected person and their family. Physical comorbidity is often treatable if not reversible. Epilepsy, delirium, falls, oral disease, malnutrition, frailty, incontinence, sleep disorders and visual dysfunction are found to occur more frequently in dementia sufferers. Physical Comorbidities of Dementia describes how these may present and gives detailed information and evidence-based recommendations on how to recognise and manage these conditions. Written by clinicians, each chapter deals with a separate condition accompanied by a list of recommendations for management. Physical Comorbidities of Dementia provides practical explanations and solutions to help all healthcare professionals to improve care for people with dementia..

To borrow or reserve this item please email NSW.Library@dementia.org.au


Kind regards Michelle 

October 24, 2017

The Australian Journal of Dementia Care - OCT-NOV 2017


IN THIS ISSUE: OCT-NOV 2017

Full text articles and books are available to  members of dementia Australia by emailing NSW.Library@alzheimers.org.au 

Cover story: A different type of dementia

Victorian welfare organisation Wintringham provides residential and community care for older homeless people or those at risk of homelessness. Many clients have alcohol-related dementia and complex social, mental and health care needs. Helen Small explains how Wintringham’s non-conventional approach provides dignified support for people who are living differently with dementia
Needs a new service model – includes a support team  - shows success through freedom – lack of choice
P 21-24

See what matters

Nicki Ewing and Joan Murphy explain why Talking Mats is a valuable resource for people with dementia. Read the article for FREE online. Click here! http://journalofdementiacare.com/see-what-matters/
The right to express our views, be listened to and be heard is a fundamental human right. If our ability to communicate is compromised this can affect our quality of life, our social interactions, as well as our sense of identity and belonging. As a person’s dementia progresses their communication can be significantly affected, which may cause frustration for the person and can be upsetting for family members.

Talking Mats, a not-for-profit organisation based in Stirling, Scotland, has developed a person-centred communication tool and symbol sets, also called Talking Mats, which can be used with people with dementia to help them to organise their thoughts and say what matters to them about their lives.
Using case examples and stories from research projects, this article looks at the positive impact Talking Mats can have on the quality of life of people with dementia. It begins with a description of Talking Mats and settings where it is currently used.
What is Talking Mats?
Talking Mats® is a visual tool where picture symbols are placed on a mat (see photo 1). There are two versions of the tool – the original physical mat (see photo 1) and the digital (for tablets, smart boards and computers).

  p 25 - 27


Tailored to fit

Richard Fleming describes a care training approach featuring Tailored Training Packages for aged care organisations. Read the article for FREE online. Click here! http://journalofdementiacare.com/tailored-to-fit/

3.108: “The committee is deeply concerned that the significant issues associated with the provision of aged care workforce training are undermining the development of the aged care workforce, and will continue to do so until they are addressed.”

3.109: “The committee is concerned by evidence that RTOs [registered training organisations] are providing inconsistent standards of training and that many RTOs are offering programs that are too short to ensure students gain the necessary skills and practical training to ensure they are job ready.”

3.110: “The committee acknowledges that quality rather than duration of courses is paramount, but considers that the length of some courses offered is far too short to cover all the necessary skills and competencies required for aged care work.”
In other words, there have been problems with the provision of training for a long time, including issues with the quality and duration of the training. The report makes it clear that these general concerns extend to the specific area of dementia care (paragraph 3.96).
  • ·        Can training make a difference?
  • ·        Beyond ‘off-the-shelf’ solutions
  • ·        Organisation-centred training
  • ·        Customised training
  • ·        Tailored Training Packages
  • ·        Improving practice takes time
  • ·        Evaluation
  • ·        Finding a way



Dying well with an intellectual disability

Kathryn Service, Karen Watchman and colleagues examine the challenges to dementia practice presented by intellectual disability
Areas of difference include; Ascertainment of approaching end of life related to the uncertainty of the progression of dementia ie tools such as the 7 stages of dementia poses challenges… recommendations include; limited independent living skills prior to the dementia ; the importance of previous communication methods ; passive care as active support; draw on previous professional relationships; comorbidities are more common ; underrepresented in palliative and hospice care…p 28- 31

Dementia-friendly public spaces

Guy Luscombe and Carmel Boyce introduce a free guide for making streets and neighbourhoods more age- and dementia-friendly

Making sense of the senses

Architect Anthony Clarke explains Sound Field, an interactive experiment exploring the role of sound in the experience of people living with dementia The article discusses the exploration of sound in dementia, explains hoe a sound field works – this is being trialled at Coles via a “quiet hour” every Tuesday morning till the end of October at 2 Melbourne stores – they will reduce the Coles radio to it’s lowest volume ; dim the lights by 50% turn down register and scanner volumes and remove all roll cages  from the floor…this is promoted as ‘sensory-friendly shopping ’… p  12-13


The Butterfly effect

Louise DeWolf reports on the transformation at Barunga Village, Australia’s first accredited provider of The Butterfly Household Model of Care
See Australia’s first accredited provider of the Butterfly Household Model of Care
Discusses the need for change; the implementation; key points  such as removing institutional features such as uniforms – grouping similar people – new approach to staff training with a focus on emotional IQ – no us and them approach – changes in mealtimes – staff join with people living  with dementia  as well as environmental changes that include – self contained households – home like surrounds – bright colours on walls – more items on display – refurbished outdoor spaces …p 16-18

Creating a bridge

Jason Burton interviews Michael Verde, founder and President of Memory Bridge, a foundation promoting communication with and memory preservation for people with dementia

Landmark dementia report

Belinda Goodenough reviews The Lancet Commission’s new report on dementia prevention, intervention and care

Making It Together - activities for people with advanced dementia!!!
Gail Kenning reports on the findings from the Making It Together design pilot study involving people with advanced dementia.

Use of co-design approaches – objects and activities for people with advanced dementia – fiddle blankets  and cushions- fashion studio kit (magnetic boards with a series of outfits) – flower arranging kits – Kumihimo weaving form – music box – peg picture making kit – quilt picture making kit – sorting blankets- spoon piano. The engagement surprised and delighted staff -
 …p 32 - 36


Research

Why people with YOD don’t use services
And Australian study has identified barriers :
1.       Appropriateness of service – ie mostly related to aged care
2.       Access to services – lack outside working hours..
3.       Knowledge and information-
4.       Case management – need for central information and referral point
5.       Social connections
6.       Transition into care
The study developed 5 core elements
It’s unique to the individual
Services to be tailored over time in a timely manner


October 11, 2017

It's not a disgrace...it's dementia - now in Hindi



It's not a disgrace...it's dementia

It's not a disgrace ... it's dementia [DVD] : Hindi 

 यह मनोभृंश है... कोई ...


 These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on NSW.Library@alzheimers.org.au

Award winning multicultural DVD series - It's not a disgrace...it's dementia






1 It’s not a disgrace ... it’s dementia - Arabic [DVD] ليسعارا... أنه من الخرف dvd 
2 It’s not a disgrace ... it’s dementia - Cambodian [DVD]
 
 
 
 
3 It’s not a disgrace ... it’s dementia - Croatian [DVD] To nije sramota ... to je demencija - Hrvatska
 
 
 
4 It's not a disgrace ... it's dementia [DVD] : Assyrian
5 It’s not a disgrace ... it’s dementia - Italian [DVD]
 
 
 
 
6 It's not a disgrace ... it's dementia - Portuguese [DVD] : Não é uma desgraça... é demençia
7
 
 
 
 
It's not a disgrace ... it's dementia - Serbian [DVD] : То није срамота ... то је деменција 
 
 
8 It's not a disgrace ... it's dementia - Spanish [DVD] : No es una desgracia...es demencia
 
 
 
 
 
 
 
9 It's not a disgrace ... it's dementia Ukranian [DVD] : Це не ганьба ... це слабоумство dvd 
 
 
10 It’s not a disgrace ... it’s dementia - Vietnamese [DVD]

The DVD It’s not a disgrace – its dementia, won the prestigious National Multicultural Marketing Awards. It is produced by the Multicultural Communities Council of Illawarra, Alzheimer's Australia NSW and the Australian Government Department of Health and Ageing and aims to raise community awareness, reduce stigma and dispel myths about dementia in
In each language edition a psychologist talks about some causes of dementia and how dementia affects memory and the brain.
Carers and support workers talk about their dementia journey and all stress the importance of seeking help early.

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