October 26, 2016

carers tips - shadowing and sundowning books aritcles

Fear and anxiety are two disturbing symptoms exhibited by many people with Alzheimer’s disease.
These symptoms are completely understandable, considering the fact that people with dementia are often confused about their surroundings.
Confusion that won’t go away leads to fear and fearful people tend to be anxious.  This need to calm anxiety and feel safe can lead people with Alzheimer’s to a behavior called shadowing…
 another behaviour know as sundowning ...

Gary LeBlanc writes in his article on shadowing that offering his dad the distraction of a bowl of ice cream helped the situation. The diversion would calm his dad and break some of the cadence of the shadowing behavior.

Gary has written two books  -
Managing Alzheimer's and dementia behaviors: common sense caregiving
Contents: Introduction --  routine routine routine --  redirection --  learning to approach someone with Alzheimer’s – adapting to character – why don’t you see them?  Hallucinations and delusions --  the difference between  hallucinations and delusions --  Sun downing and evening confusion --  don’t turn off the lights – keeping things well lit – body language and communication --  dealing with combative behavior  --  patience is a virtue --  a caregivers’ promise
Staying afloat in a sea of forgetfulness : common sense caregiving
Gary Joseph LeBlanc is a columnist and book dealer from Spring Hill, Florida. He was the primary caregiver of his beloved father stricken with Alzheimer's disease for nearly the past decade.
 LeBlanc's weekly column appears in the Hernando Today, a Tampa Tribune Publication. His writings offer insight and hope through his own 3,000 days plus of caregiving, dealing with the memory-impaired, given in a caregiver friendly manner...
When caregivers are looking for help, the last thing they need is medical text so complex they already forgot what they read by the time it's laid back down. This is what got me started on writing about common sense caregiving, which turned into a weekly column and now into this book. My goal is to make this book as "caregiver friendly" as possible. Sharing my triumphs and hardships from my plus three-thousand day campaign in dealing with the disease of Alzheimer's and the world of memory-impairment.

What to do when someone you love begins to forget. Having a loved one with memory loss is no laughing matter, but a little humour can help. With her sage advice and trademark irreverence, Joan Sauers helps to relieve the frustration of dealing with dementia sufferers while offering practical advice that will help you help them. Above all she reminds you that, though it may feel like the loneliest job in the world, you are not alone, a very quick and helpful read!

Creating moments of joy : for the person with Alzheimer's or dementia
When a person has short-term memory loss, his life is made up of moments. We are not able to create a perfectly wonderful day with those who have dementia, but it is absolutely attainable to create perfectly wonderful moments—moments that put smiles on their faces, a twinkle in their eyes, or trigger memories. Five minutes later, they won’t remember what you did or said, but the feeling you left them with will linger.

Within the sections are smaller steps. At the end of each step is a place where you can journal your thoughts, solutions, and treasures to help you achieve the overall goal of creating many moments of joy for the person with dementia, and for YOU!

*These resources are available for loan to members of AANSW - if you would like to reserve them or if you would like articles on shadowing or sundowing  please email the Library on nsw.library@alzheimers.org.au

October 25, 2016

for the healthcare professional - Australian Journal of Dementia Care : OCTOBER/NOVEMBER 2016

Full text articles and books are available to members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au
Cardboard VR app for smartphones enables reality of dementia through EDIE’s eyes p 6
A new virtual reality app that puts users in the position of a person living with dementia has been released for Google's Cardboard VR platform.
Called EDIE (pronounced Eddy put standing for Educational Dementia Immersive Experience), the app was launched on Thursday by Alzheimer's Australia Vic, and is available free on Android and iPhone.
Carers trying out EDIE at the Alzheimer's Australia launch event in Melbourne.
Carers trying out EDIE at the Alzheimer's Australia launch event in Melbourne. Photo: Arsineh Houspian
Dr Tanya Petrovich, manager of business development at Alzheimer's Australia Vic, says the app was designed to build empathy and make people more aware of the issues faced by those living with Dementia.
"The idea is you step into the shoes of a person named Edie, who's living at home with his wife, and who is living with dementia", Petrovich says. When Edie gets up in the middle of the night and has to go to the bathroom, players see the world through his eyes.
A screenshot from the EDIE VR app.
A screenshot from the EDIE VR app. 
Petrovich says that many people think of Alzheimer's as only affecting the memory, but that it actually has a much broader range of symptoms. With EDIE, the user will get an approximation of the changes in sensory perception that may be experienced by a person living with dementia.
"Perception is a really big issue", Petrovich says. "For you and me a pattern is easy to distinguish, but for a person living with dementia a pattern can appear to be moving, or it could even appear to be an animal. It could appear to be cockroaches or ants".

It might even appear that a larger animal or person is in the room, when in reality it's just a pattern on the wall, Petrovich said. She added that while this is known to happen to some people living with dementia, every person is different and symptoms vary.
In addition to memory, dementia can affect mood, language, problem solving and the ability to plan, although a virtual reality platform presents an ideal way to explain its effect on perception.
Dr Ron Petersen from the Mayo Clinic in the US tries out the EDIE app at the launch event.
Dr Ron Petersen from the Mayo Clinic in the US tries out the EDIE app at the launch event. Photo: Arsineh Houspian
Petrovich says the free app is an example of the kind of tool Alzheimer's Australia uses when training carers. Later this year, a workshop called Enabling Edie will use the app as a training tool. Carers will experience the same scene featured in the public version but with a second scene that shows how, after his carer makes a few changes, the environment could become more supportive for Edie.
EDIE can be used with any VR viewer compatible with Cardboard.
 Help and more information can be found by calling the National Dementia Helpline on 1800 100 500.

•The story of dementia: Faith Gibson and Pam Schweitzer p8
 John Killick continues his series exploring the history of dementia through the stories of individuals - discusses the following book as well as person centred care

* available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

Remembering yesterday, caring today : reminiscence in dementia care a guide to good practice
Pam Schweitzer and Errollyn Bruce

Reminiscence is a vital way to stimulate communication and promote confidence and self-worth in people with dementia. This practical guide is designed to give those who care for people with dementia a clear sense of how reminiscence can be used to greatly improve their quality of life.
The book explores how reminiscence can contribute to person-centred dementia care and contains detailed descriptions of activities that can be used in a group setting, for one-to-one reminiscence at home or in a variety of care settings. Based on ideas developed and tested internationally over a period of ten years, the book offers imaginative approaches to reminiscence and a wealth of resources for use in a wide range of situations. The book includes advice on organising a reminiscence project and provides a useful planning tool for group sessions.
Remembering Yesterday, Caring Today highlights the value of reminiscence for those with dementia and is an essential guide to good practice for family and professional carers.

•Allies in care: optimising life with dementia p 10

 Jacqueline Wesson, Jamie Hallen, Atosha Clancy and Glen Pang explain the positive contribution allied health professionals can make to the lives of people with dementia, their carers and families, and introduce two new guides for health professionals and consumers
Allied health professionals and you : a guide for people living with dementia and their carers
This booklet talks about how you can improve your life by talking to allied health professionals.
Allied health professionals include:
• Aboriginal and Torres Strait Islander health
workers (these workers will have different titles
in different states and territories)
• audiologists
• Chinese medicine practitioners
• chiropractors
• counsellors
• dementia advisors and key workers
(see note below)
• dental therapists, dental hygienists and oral
health therapists
• dieticians
• divisional therapists
• exercise physiologists
• music therapists
• occupational therapists
• optometrists
• osteopaths
• pharmacists
• physiotherapists
• podiatrists
• psychologists
• neuropsychologists
• social workers
• speech pathologists.
Note: Dementia advisors (sometimes known as key workers) are available in some states and territories. Most are allied health professionals (or nurses) with considerable experience or further training in working with people with dementia.

arts engagement

Viewing art brings ‘in the moment’ pleasure pp 16

A recent evaluation of the Art and Dementia program at the Art Gallery of NSW shows that viewing art brings ‘in the moment’pleasure for people with dementia, as well as opportunities for storytelling, reminiscence and conversation

Arts engagement for people with dementia evaluation : independent evaluation of the Art Access Program Art Gallery of New South Wales (book)
* available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au
Sustaining the success of person-centred dementia care pp 16 -19

Not-for-profit aged care provider Eldercare completed the implementation of its Dementia Excellence Program at 12 residential facilities across the greater Adelaide and Yorke Peninsula regions earlier this year
topics include: promoting residents choice  ; achieving the vision - clinical leadership and lifestyle programs and tailored support for residents - family assistance and supportive physical environments ; small changes delivering dramatic improvements ; meeting the sustainability challenge ; a break task approach to breakfast ;  learning important lessons.
•BPSD: alternative understanding of a well-accepted term pp 20 -22
Christine Bryden gives a brief overview of BPSD and, from the perspective of a person living with dementia, proposes an experiential understanding of the acronym to prompt improved responses by caregivers to these non-verbal communications
She regards behaviours as signs not symptoms ; language matters - because it frames the way caregivers perceive people with dementia ; see the meaning in the behaviour ; alternatives to BPSD eg basic personal signs of distress ...
DCRC Special Issue: The Big Picture in Dementia Research
  • looking at the big picture
  • The DementiaKT Hub: translating research into practice|- Belinda Goodenough and Tracy Higgins introduce The DementiaKT Hub – a new one-stop online destination for the latest research-based dementia resources involving DCRC expertise.
  • Creating a dementia-friendly society, starting with kids - by jess baker
  • the case for a national dementia registry - - why we need one - planning - world wide
  • inspired action : Australian team at forefront of younger onset dementia research - INSPIRED Study
  • cognitive rehabilitation for people with dementia : what is it and does it work?
  • Trial HALTS unnecessary use of antipsychotics
  • CST guide designed for Australian users  - cognitive stimulation therapy manuals
  • GP education supports timely diagnosis
  • Dementia prevention priorities in General practice
  • four warning signs of nursing care issues - includes strategies to improve care  
  • strategies for changing staff care practices
  • checking the evidence for appreciative inquiry even the smallest changes in care delivery can be challenging to implement...includes 4 stage knowledge translation.
  • the cycle of 4Ds approach of appreciative inquiry compared with a problem solving method
  • connections in care social network analysis - social professional networks - social relations between residents ...residents are surrounded by people yet they feel alone.- implications for practice. 
  • measuring the importance of getting out and about - measuring life space - community mobility - ethics of passive monitoring
  • taking steps to reduce wandering  - responding more effectively - the walking program trial - concerns
  • tools to build care workers evaluations skills
  • BPSD - getting good practices into everyday practice - education program - care staff experiences - feedback on workplace changes difficulties with suggesting or implementing change
  • Barriers and enablers to KT in healthcare - promoting Behaviour management : a guide to good practice
* available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

October 24, 2016

book review - What the Hell Happened to My Brain?

Great Read about Living with Dementia

Just one reader’s opinion, Professor Mary Radnofsky

Kate Swaffer’s new book, What the Hell Happened to My Brain? (2016) 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.

So Kate has made this book more than you or I could have ever imagined – she not only opens her [still-remarkable] mind to offer her vast knowledge and caring spirit, she also provides over thirty chapters with practical answers your questions on living – and I mean really living well and beyond – dementia. Keep a pencil or highlighter handy; you’ll want to take notes and share these words!

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.

Christine Bryden was named a Member in the Order of Australia for significant service to community health through support for people with Alzheimer’s disease and other dementias.

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.
'Christine's journey as a dementia advocate is truly remarkable.

 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?

'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.

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

October 21, 2016

for the healthcare professional : Dementia – The international journal of social research and practice,

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

Dementia September 2016; 15 (5)  

Table of Contents

Top of Form


 “It makes me feel like myself”: Person-centered versus traditional visual arts activities for people with dementia

Pp.  15: 895-912,


Video data on people with dementia were collected during a person-centered and intergenerational arts activity program called Opening Minds through Art (OMA)


A subsample of the OMA participants were also video recorded during traditional visual arts activities (e.g. coloring books, scrapbooking).


Well-Being Observation Tool© was used to code the intensity and frequency of observed domains of well-being (i.e. social interest, engagement, and pleasure) and ill-being (i.e. disengagement, negative affect, sadness, and confusion).


Descriptive results indicate a high percentage of moderate or high intensities of well-being during OMA sessions with little to no ill-being.


OMA vs. traditional visual arts activities showed significantly higher intensity scores for OMA in the domain of engagement and pleasure, as well as significantly lower intensity scores for disengagement.


Redesigning acute care for cognitively impaired older adults: Optimizing health care services

Pp.  15: 913-930,


Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality. To develop a foundation of fundamental needs for health care redesign, we conducted focus groups with inpatient and outpatient providers to identify barriers, facilitators, and suggestions for improvements in care delivery for patients with CI.


Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care

Pp.  15: 931-957,


Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-home care and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care.

The aim of this study was to explore and describe professional care providers - investigate practice in the RightTimePlaceCare-countries with regard to screening, diagnostic procedures and treatment of dementia and home care.


End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study

Pp.  15: 958-975,


Aim To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia.

Results/Findings Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life.

Conclusions Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.


Therapeutic use of dolls for people living with dementia: A critical review of the literature

Pp.  15: 976-1001,


Aim To undertake a critical review of the published literature on doll therapy, using the Critical Appraisal Skills Programme Checklist (CASP) tool, in order to determine the potential benefits and challenges of this therapy for people living with dementia.

Conclusions Despite many commentaries and anecdotal accounts of the practice, this review identified only 11 empirical studies that were eligible. The majority of studies found that the use of dolls could be therapeutic for some people living with dementia by reporting increased levels of engagement, communication and reduction in episodes of distress. Some studies identified limitations to the therapy including; confusion over the ownership of the doll and healthcare professional uncertainty about issues pertaining to autonomy.


Inter-professional perspectives of dementia services and care in England: Outcomes of a focus group study

Pp.  15: 1002-1020,


Many people living with dementia are supported at home using a variety of health and social care services.

Respondents identified problems with information sharing and incompatible electronic systems; inflexibility in home care services; and poor recognition of dementia in hospital settings.

Key areas suggested by staff for improvements in dementia care included the implementation of more flexible services, dementia training for health and social care staff, and better quality care in acute hospital settings.


Experience of media presentations for the alleviation of agitation and emotional distress among dementia patients in a long-term nursing facility

Pp.  15: 1021-1033,


… it is clear that environmental factors can offer relief of cognitive impairment and encourage emotional stability. The purpose was to explore dementia patients’ experiences of a media presentation including images of nature.

The experience of natural scenes in dementia patients’ everyday atmosphere became a new and positive aspect of life at the long-term nursing facility,

This treatment could provide dementia patients with a nurturing relationship, making nature a supportive part of their everyday experience.

‘Talking about my experiences … at times disturbing yet positive’: Producing narratives with people living with dementia

Pp.  15: 1034-1052,

Conclusions Producing a narrative is a valuable and engaging experience for people with dementia and carers, and is likely to contribute to the quality of dementia care. Further research is needed to establish how narrative production could be incorporated into routine practice.


 ‘I wish they would remember that I forget:’ The effects of memory loss on the lives of individuals with mild-to-moderate dementia

Pp.  15: 1053-1067,


Purpose of study Due to changing cognitive and functional capabilities, individuals with dementia face challenging care-related issues such as feelings of embarrassment, relationship strain, and symptoms of depression and anxiety. Limited research exists examining individuals with dementia's perceptions and concerns about these issues and how their perspectives can impact the quality and process of their illness experience.

Results Individuals with dementia commented on a wide range of issues involving their memory loss, including negative emotional impacts, future concerns and illness progression, forgetting, loss of independence, and the negative and positive influences on interpersonal relationships. **Across questions, many individuals also stated that their memory loss did not significantly impact their lives.

Implications Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.


A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being

Pp.  15: 1068-1081,


Background: This study investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress.

Conclusions: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being..


Couples' experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics

Pp.  15: 1082-1099,


Objective The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse.

Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads.

Results … showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.


The dement in the community: Social work practice with people with dementia revisited

Pp.  15: 1100-1111,


While social work practice with people with dementia and their families… is an emerging area of specialism.

The increased incidence, prevalence and recognition of dementia suggest that this area of practice will expand and so learning from previous practice may offer helpful insights.


Carers: The navigators of the maze of care for people with dementia—A qualitative study

Pp.  15: 1112-1123,

1.    University of Canberra, Canberra, Australia

1.    Maggie Jamieson, Public Health, University of Canberra, Locked Bag 1, Canberra ACT 2601, Australia. Email: Maggie.jamieson@canberra.edu.au

1.    Laurie Grealish

1.    Subacute and Aged Nursing Griffith University, Griffith, Australia; Gold Coast Hospital and Health Services, Southport, Australia

1.    Jo-Ann Brown

1.    Alzheimer’s Australia NSW, Sydney, Australia

1.    Brian Draper

1.    School of Psychiatry, University of NSW, Sydney, Australia


Background Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital.

Results During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need.

Conclusion The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries.

Recommendations This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences.


Being a pedestrian with dementia: A qualitative study using photo documentation and focus group interviews

Pp.  15: 1124-1140


The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences.


The first category, adding layers of problematic traffic situations to each other, was characterized by the informants’ creation of a problematic situation as a whole.

The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians.

In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.


Shared decision-making in dementia: A review of patient and family carer involvement

Pp.  15: 1141-1157,


Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.


Person-centred dementia care: a reality check in two nursing homes in Ireland

Pp.  15: 1158-1170,


The introduction of a person-centred care approach to dementia care has been a major paradigmatic shift in the care provision in residential settings for older adults in Ireland. However, policy implementation in nursing homes relies very much on the preparedness of nursing staff.

 Notwithstanding this, carers’ perspectives on ‘good care’ for people with dementia included elements of PCC which suggested its ‘implicit’ use in practice. Besides the necessity of more (and more explicit) training on PCC, the findings also suggest concerns around communication between staff and management and the need for improvement of staffing resources and available time in residential settings in order to make the delivery of person-centred dementia care a reality


 - borrow the DVD - available to members of Alzheimer’s Australia NSW by emailing NSW.Library@alzheimers.org.au
The voices of Iris: Cinematic representations of the aged woman and Alzheimer’s disease in Iris (2001)

Pp.  15: 1171-1183


Audiences must be critical of film representations of the aged woman living with Alzheimer’s disease and of dangerous reinscriptions of stereotypical equations about ageing as deterioration. This paper analyses the representation and decline of the aged woman through the different voices of Iris Murdoch in Richard Eyre’s film Iris (2001). Key vocal scenes are considered: On-screen encounters between young and aged Iris, vocal representations of dementia symptoms and silencing Iris as her disease progresses. Further, Iris’ recurrent unaccompanied song, “The Lark in the Clear Air,” compels audiences to “see” Iris with their ears more than with their eyes, exemplifying the representational power of sound in film. This paper is an appeal for increased debate about sonic representations of aged women, ageing and Alzheimer’s disease and dementia in film. The significance of audiences’ critical awareness and understanding about the social implications of these representations is discussed.


Conditions, components and outcomes of Integrative Validation Therapy in a long-term care facility for people with dementia. A qualitative evaluation study

Pp.  15: 1184-1204,


In this study, the practical application of Integrative Validation Therapy in a nursing home for people with dementia was investigated and evaluated from the perspectives of professionals and relatives by using Fourth Generation Evaluation - a complex intervention frequently applied in Germany’s long-term care settings, is a modification of Feil’s Validation Therapy and contains a specific attitude and several components of action. The findings demonstrate that professionals as well as relatives of nursing home residents gave the intervention a positive rating. From the perspective of the participating professionals, the application of IVA results in less agitated residents which also has an influence on the consumption of benzodiazepine and neuroleptics. …Another conclusion is that IVA supports person-centred care because, with IVA, professionals react to typical needs people with dementia have: comfort, inclusion, attachment and identity (Kitwood, 2012).

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 - book
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.

 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.


Changes in communication of Deaf people with dementia: A thematic interview with a close family member

Pp.  15: 1205-1218,


Background and aim Learning about changes in communication of Deaf with dementia (DWD) is important in order to improve services and support DWD and their families. We explored family members’ views on the changes in communication DWD have and the ways communication was adapted due to progression of dementia.

Results With decreasing vocabulary and increasing sign-finding difficulties, conversations became poorer, and DWD tended to diverge from the topic. Nonverbal communication became more important as the verbal communication abilities of DWD deteriorated, and the adult children took a more active role by taking initiative and guiding conversations.

Conclusion DWD seem to go through similar changes in communication as hearing people with dementia. Adult children of DWD need to get used to interpreting and assisting their parent’s communication through different phases of dementia.


Improving the care of older persons in Australian prisons using the Policy Delphi method

Pp.  15: 1219-1233,

1.    Karen Patterson

1.    Justice Health & Forensic Mental Health Network, Practice Development Unit, Malabar, New South Wales, Australia

1.    Justice Health & Forensic Mental Health Network, Practice Development Unit, Malabar, New South Wales, Australia

1.    Claire Newman, Justice Health & Forensic Mental Health Network, Practice Development Unit, The Roundhouse, Long Bay Complex, 1300 Anzac Parade, Malabar, New South Wales 2036, Australia. Email: Claire.newman@justicehealth.nsw.gov.au

1.    Katherine Doona

1.    Justice Health & Forensic Mental Health Network, Long Bay Hospital, Malabar, New South Wales, Australia



There are currently no internationally recognised and approved processes relating to the care of older persons with dementia in prison. This research aimed to develop tools and procedures related to managing the care of, including the identification and assessment of, older persons with dementia who are imprisoned in New South Wales, Australia. A modified approach to the Policy Delphi method, using both surveys and facilitated discussion groups, enabled experts to come together to discuss improving the quality of care provision for older persons with dementia in prison and achieve research aims.


The experience of family carers of people with dementia who are hospitalised

Pp.  15: 1234-1245


Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals.

 Adjusting to the change in the carer’s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued.

Family support can assist with the transition but family conflict increases anxiety.

Good communication between clinicians and the carer is vital.

The carer should be included in decision-making as the ‘expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.


Knowingly not wanting to know: Discourses of people diagnosed with mild cognitive impairment

Pp.  15: 1246-1259,


Mild cognitive impairment is a heterogeneous clinical state whereby assessed cognitive changes over time may progress to dementia, remain stable or revert to back to normal.

This study aimed to identify, through discourse analysis, how people with a diagnosis of mild cognitive impairment used language in order to reveal the societal views and shared meanings of the diagnosis, and the positions taken by people.

Furthermore, in the absence of a coherent discourse related to mild cognitive impairment, participants went on to position themselves between two more familiar discourse; ‘Knowing’ about ageing and dying and ‘Not Wanting to Know’ about dementia. Clinicians must consider how information is presented to people about mild cognitive impairment, including where mild cognitive impairment is positioned in respect to normal ageing and dementia.


Qualitative assessment of self-identity in people with advanced dementia

Pp.  15: 1260-1278,


This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer's disease

 The participants with dementia showed evidence of self-reference even though losses in explicit memory were evident.

Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of “self.”


Innovative practices

Discovering the dementia evidence base: Tools to support knowledge to action in dementia care (innovative practice)

Pp.  15: 1279-1288,


Dementia requires expert care and decision making, based on sound evidence. Reliable evidence is difficult for busy dementia care professionals to find quickly. This study developed an experimentally tested search filter as an innovative tool to retrieve literature on dementia. It has a known retrieval performance and can be provided as an open access web link directly to current literature. The Dementia Search Filter was developed using validated methodology. An Expert Advisory Group of dementia care practitioners and researchers ratified a representative set of relevant studies and undertook post hoc relevance assessment, to ensure the usefulness of the search filter. The Dementia Search Filter is published on two websites and combined with expert searches to link to evidence on dementia, at end of life in aged care settings and more generally. Evidence accessed by the Dementia Search Filter will help overcome barriers to finding current relevant research in the field, for practitioners, researchers and decision makers.


Catch a Glimpse of Me: The development of staff videos to promote person-centered care

Pp.  15: 1289-1294,


Catch a Glimpse of Me is an ongoing project that uses video to help staff deliver more person-centered care for people with dementia living in long-term care. Focus groups consisting of residents, family and staff members were conducted to develop a template for the development of the videos. The five themes they identified as being important to include are: family; interests and hobbies; memories and moments; life space and getting personal. The article describes the process of developing the videos and discusses the ongoing potential of the Catch a Glimpse of Me project.


Mark Making: Methodologies and methods (innovative practice)

Pp.  15: 1295-1305,


Mark Making is a recently completed review exploring the role of the participative arts for people with dementia in the UK. Key concerns underlying Mark Making were both how to privilege the views and feelings of people with a dementia and also how best to understand the value of the arts for people with a dementia.

These issues were tackled using a variety of qualitative methods. Methods included a rigorous literature review, the development of a unique web-based map locating many participative arts projects and above all working with people with a dementia to ascertain their views. This brief article will concentrate on some of the innovative methods that the Mark Making team used, with particular reference to comics as a mode of engagement as used in the Descartes project. The article will provide an insight into some of the methodological challenges confronted by Mark Making as well as the inspirations and successes that were enjoyed.


The role of Dementia Champion in dementia care: Its aspirations, development and training needs (innovative practice)

Pp.  15: 1306-1312


Background The conceptualisation and development of the role of Dementia Champions in clinical practice is ongoing, and dementia specific training has a significant impact on the scope of the role.

Findings Of 188, 34 Dementia Champions (response rate 18%) participated. Most perceived dementia awareness training as useful, but limited. Areas suggested for further development were context specific skills training, education programmes that were formally recognised, and clarification around the expectations of the role.

Conclusion Expectations of ‘champion roles’ in dementia need to be re-visited, specifically in relation to the remit of the role and the level of education, preparation and support required for Dementia Champions to become change agents in dementia care.



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