New in the library 2019

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As the year draws to a close let’s take a look at some of the new additions to the library.  The following titles were all published in 2019 and can be found in our eCollection or if
you would prefer to view a print copy  get in touch with the library.

Already read it! – we would love your feedback.

 


namaste care for people living with dementiaNamaste Care for People Living with Advanced Dementia/  Nicola Kendall (2019)

The Namaste Care approach is focused on giving comfort and pleasure to people with advanced dementia through sensory stimulation, especially the use of touch. This book provides extensive guidance on each stage of this process, including harnessing community interest, recruiting and training volunteers, and managing pain and discomfort.
This practical guide is a timely reminder of the power and value of informal care and compassionate communities in helping to care better for people with dementia, and would be of interest to carers, professionals and family members.

Read a sample from the eBook

 


memory wiseMemory-wise : how memory works and what to do when it doesn’t  /  Anne Unkenstein  (2019)

It’s common to be concerned about memory lapses, but how do you know if memory difficulties are normal or the beginnings of something more serious? Can dementia be prevented? Memory-wise explains how memory works and the changes that can occur as we age. It explains the sort of health, attitude and lifestyle factors that can lead to fluctuation in memory and provides practical tips to minimise their effects. Based on current research, Memory-wise examines memory during menopause and includes easy-to-follow suggestions for maintaining brain health, along with strategies for supporting memory in early dementia. We can all become more confident in managing memory.

Read a sample from the eBook


 

faithful as she fadesFaithful As She Fades : A Memoir of Love and Dementia  /  Robert Fischbach  (2019)

Faithful As She Fades is the first-person account of Robert Fischbach’s  journey as a caregiver to his  beloved wife diagnosed  with frontotemporal dementia (FTD). Having vowed to her that he would refrain from putting her in a facility, Bob found himself as the sole caretaker (until well into his wife’s illness) of a woman with whom he had raised two children and shared a long and happy marriage.  From growing up Jewish in New York, to meeting his Janie and raising their two sons, Fischbach takes the reader on a heartfelt, emotional, sometimes funny and always moving journey through the decades he spent with his wife–and then through the near-decade in which he slowly had to let her go.

Read a sample from the eBook


montessori methodMontessori Method for Connecting to People with Dementia: A Creative Guide to Communication and Engagement in Dementia Care  /  Tom Brenner  & Karen  Brenner  (2019)

Creative activities can support people with dementia, leading to moments of reconnection and joy. This book shows how the Montessori method – with its arts-based, person-centred and positive focus – can help caregivers connect to people with dementia.

Drawing on 20 years of experience, Tom and Karen Brenner explain the philosophy of the Montessori method, provide clearly-written steps to follow when applying it, and share a wealth of case studies and stories from their personal work using this method with people with dementia.

Read a sample from the eBook


clinicians guide to nonClinician’s guide to non-pharmacological dementia therapies.  /  Daniel Nightingale  (2019)

The book outlines a range of non-pharmacological therapies clinicians can adopt in their daily practice and sets out information and advice on each therapy and how to implement them in practice, illustrated with case studies and practical examples and drawing on the author’s own clinical work.

Many different therapies are discussed including Cognitive Behaviour Therapy (CBT), Neuro-Linguistic Programming (NLP), and farm and ranch therapy. Each has been chosen for its own particular benefits, including early stage dementia and rarer forms, while others can be applied more generally.

Read a sample from the eBook

 


Fighting for my lifeFighting for My Life: How to Thrive in the Shadow of Alzheimer’s / Jamie Tyrone (2019)

Jamie Tyrone was forty-nine years old when she learned she had a genetic predisposition toward Alzheimer’s disease—in fact, her genes translated to a 91 percent chance that she would contract the disease during her lifetime. Surprised by the way she learned of the diagnosis through genetic testing, and painfully familiar with Alzheimer’s because of her family history and her experience as a nurse, Jamie felt as if she had a ticking time-bomb inside her, ready to go off at any moment.

Read a sample from the eBook


dementia reimaginedDementia reimagined : building a life of joy and dignity from beginning to end  /  Tia Powell  (2019)

Reimagining Dementia is a moving combination of medicine and memoir, peeling back the untold history of dementia, from the story of Solomon Fuller, a black doctor whose research at the turn of the twentieth century anticipated important aspects of what we know about dementia today. In demystifying dementia, Dr. Powell helps us understand it with clearer eyes, from the point of view of both physician and caregiver. Ultimately, she wants us all to know that dementia is not only about loss–it’s also about the preservation of dignity and hope”

Read a sample from the eBook

 


what dementia teaches us about loveWhat dementia teaches us about love  /  Nicci Gerrard  (2019)

After her own father’s death from dementia, the writer and campaigner Nicci Gerrard set out to explore the illness that now touches millions of us, yet which we still struggle to speak about. What does dementia mean, for those who live with it, and those who care for them?

This truthful, humane book is an attempt to understand. It is filled with stories, both moving and optimistic: from those living with dementia to those planning the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of individuals, from the campaigners battling for greater compassion in care to the families trying to make sense of this ‘incomprehensible de-creation of the self’. It explores memory, language, identity, ageing and the notion of what it truly means to care.

Read a sample from the eBook


using technology in dementia careUsing Technology in Dementia Care: A Guide to Technology Solutions for Everyday Living  /  by Arlene Astell, Sarah Kate Smith and Phil Joddrell  (2019)

Many new pieces of technology can be beneficial to individuals living with dementia, including both hardware and software. This straightforward guide summarises the current research on this growing topic, and gives practical advice on how available technology can be used to improve the everyday lives of people with dementia.

Looking at a range of available products, such as off-the-shelf computers and smartphones, to dementia specific applications and programs, it also addresses some common obstacles and barriers faced when introducing technology in dementia care.

Read a sample from the eBook


dementia friendly worshipDementia friendly worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities  /  Edited by Virginia Biggar, Lynda Everman and Steven M. Rabbi Glazer  (2019)

Religious faith can often be a source of reassurance for individuals and families facing dementia, yet many faith leaders lack the know-how to adapt their ministries to help this group to draw comfort from their faith. Compiled by around 50 different authors, this collection represents diverse faith traditions, including Christianity, Islam, Judaism, Sikhism, Buddhism and Native American, and how each tradition can offer support to people with dementia. Providing an understanding of the cognitive, communicative and physical abilities of people with dementia, it shows what chaplains, clergy and lay persons can do to engage with them through worship.

Read a sample from the eBook


evidence based practice in dementiaEvidence-based practice in dementia for nurses and nursing students  /  edited by Karen Harrison Dening ; foreword by Alistair Burns.  (2019)

Each of the 25 chapters are written by experts in the field of dementia care and are grounded in thoroughly researched, up-to-date evidence, have a direct bearing to nurse practice, and use case studies to give examples of application of the evidence to practice. It begins by introducing dementia as a diagnosis, a syndrome, and a set of diseases, signs and symptoms. It then deals with various principles that underpin dementia care,
including person-centred care, behaviours that challenge, risk management, and understanding relationships affected by dementia. Finally, it assesses dementia care across a range of care settings, such as primary care, care homes, domiciliary care, acute hospital, and hospice services.

Read a sample from the eBook


be withBe With Letters to a Carer / Mike Barnes (2019)

Poet Mike Barnes has spent years caring for his mother, Mary, through the stages of moderate, severe, very severe and late-stage Alzheimer’s. In an eloquent series of letters, addressed to an anonymous long-term dementia carer, he transforms his own increasingly challenging experience into a wellspring of clarity and understanding, support and solace.
This is no ordinary practical care guide. Using bite-sized paragraphs perfectly designed for harried carers to dip into, Barnes tells a compelling personal story that unfolds a side of dementia almost entirely missing from public discussion:
‘All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism, and a capacity for joyful relatedness.’

Read a sample from the eBook


communication skills for effective dementia careCommunication skills for effective dementia care : a practical guide to communication and interaction training (CAIT)  /  edited by Ian Andrew James and Laura Gibbons (2019)

Effective communication is critical for everyone, and this insightful book teaches the skills needed by healthcare staff in their day-to-day interactions with people with dementia and their families. Often when people with dementia exhibit behaviour that challenges, it is an indication that their needs are not being met. The authors illustrate the key aspects of communication for the development of a skilled and confident workforce, capable of providing thoroughly effective care that reduces levels of agitation in people with dementia.

Read a sample from the eBook


Dear alzheimersDear Alzheimer’s : a diary of living with dementia  /  Keith Oliver  (2019)

Keith Oliver was diagnosed with young onset dementia in 2010, and has since become a leading activist for dementia care, and an international speaker. Telling his story through a diary format, this book gives an unparalleled insight into what day-to-day life with dementia is like, and how he continued to live a full life after diagnosis.

Read a sample from the eBook

 


art therarpy with older adultsArt therapy with older adults : connected and empowered  /  Erin Partridge  (2019)

Advocating for a more collaborative approach to art-making, the author presents approaches and directives designed to facilitate community engagement, stimulate intellectual and emotional exploration, and promote a sense of individual and collective empowerment. Relevant to community, assisted living, skilled nursing and dementia-care environments, it includes detailed case studies and ideas for using art therapy to tackle stigma around stroke symptoms and dementia, encourage increased interactions between older adults in care homes, promote resilience, and much more.

Read a sample from the eBook


clear dementia careCLEAR Dementia Care : a model to assess and address unmet needs  /  Dr. Frances Duffy  (2019)

he CLEAR Dementia Care (c) model is an effective method of assessing behaviour that challenges, through an understanding that such behaviour may be a way of communicating unmet needs. This book explains the many factors that contribute to challenging behaviour and how a greater understanding of this can enhance quality of life and lead to better care for the person with dementia in both hospital and residential settings.

Read a sample from the eBook

 



 

practical nutritionPractical Nutrition and Hydration for Dementia Friendly Mealtimes  /  Lee Martin  (2019)

Due to the related cognitive decline, the majority of people with dementia will experience a reduction in mealtime abilities at some stage of the disease. Changes in mealtime abilities can lead to malnutrition and related issues for the person with dementia, and feelings of powerlessness and worry for carers. Despite this, there is a current lack of information on how to deal with this complex issue. In this accessible guide, Lee Martin offers simple, practical and cost-effective solutions to ensure healthy and enjoyable eating for people with dementia. Presenting clinical advice in everyday language, this is the perfect book for unpaid carers and healthcare professionals alike.

Read a sample from the eBook


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Celebrations and dementia

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Holidays, celebrations and festive occasions can be stressful at the best of times. For people living with dementia, the changes in routine and extra sensory demands can be overwhelming.  Finding time before the occasion to think through how to create a dementia-friendly environment and how family traditions can be adjusted to accommodate a person living with dementia mean that the entire family can enjoy coming together.


Dementia Australia – Tips for holiday cheer        

Download tip sheet


A better visit’ is a free to download app for iPads featuring a range of two-player games designed to enhance communication and facilitate positive social interactions between people with dementia and their visitors.

The App is designed to help families have a ‘Better Visit’ with their family member living in residential care. Often family members struggle to interact and engage with a family member who no longer recognises them. This application assists with engaging the family members and results in a ‘Better Visit’ for everyone.

Read more


travelling and holidays with dementiaTravelling and holidays with dementia

Although living with dementia may make holidays more complex, it doesn’t necessarily mean that these plans need to be put aside.

The Travelling and holidays with dementia booklet provides a summary of the key issues surrounding travelling and holidaying when living with dementia, and it provides a number of useful tips which will assist you to have an enjoyable holiday.

Download booklet


friends and family matterFamily and friends matter

The family and friends matter booklet reinforces the importance of family, friendship and social connection for people living with dementia and provides strategies and ideas to help an individual engage and maintain their relationship with a family member or friend who has developed dementia.

 


christmas1Preparing for Christmas with dementia

When preparing for Christmas, make sure you set your limits early, stick to them and be clear about them with others. You do not have to live up to the expectations of friends or relatives.

Read more

 


gifts1Creative ideas for people with dementia during the festive period

Creative activities can have a positive impact on our physical and mental health and wellbeing. They can also help us regain a sense of self. People with dementia can also enjoy creative gift making and activities.

Read more

 


christmas2How to celebrate Christmas with a person with dementia

A case study of how one couple navigate the christmas season. Hopefully, their strategies will suggest things other families can do for a better Christmas.

Read more

 


 

 

 

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Frontotemporal dementia

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Frontotemporal dementia (FTD), also referred to as frontotemporal degeneration, is a spectrum disorder  describing a range of conditions that affect the frontotemporal lobes. FTD typically affects younger people, with symptoms often beginning in people’s fifties or sixties or even younger.

The different frontotemporal dementias can be divided into three broad categories; behaviour, language (referred to collectively as primary progressive aphasia or PPA), and movement.

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Dementia Australia support and resources

Dementia Australia and the Australian Frontotemporal Dementia Association (AFTDA) have joined forces to increase access to support for people living with frontotemporal dementia, their families and carers.

Read the full media release

Visit the Dementia Australia web pages on frontotemporal dementia


 

greeennailsGreen Nails and Other Acts of Rebellion: Life After Loss by by Elaine Soloway (2012)

After more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change—exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration—a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor.

Available from the Dementia Australia library in hard copy or Ebook


greenvanillatea.jpgGreen Vanilla Tea: One Family’s Extraordinary Journey of Love, Hope, and Remembering by Marie Williams (2014)

 Marie Williams writes poignantly of her husband Dominic’s struggles with early onset dementia and amyotrophic lateral sclerosis (ALS) at the age of 40, and how their family found hope amidst the wreckage of a mysterious neurological condition.
 
As the condition develops and progresses, the normally devoted family man and loving partner seems to disappear beneath an expressionless facade, erratic behavior, and a relentless desire to wander that often leaves him lost. The road to diagnosis is long and confusing, and what starts off as perplexing for the family then becomes frightening. The man they love is changing, and no one seems to know why. He no longer turns up to his sons’ high school events. He falls and bumps into things. He becomes verbally disinhibited, emotionally disengaged, and, at times, belligerent. He doesn’t seem to be able to read the social cues of other people. He gets lost in familiar places, as well as on obsessive work trips overseas. He recklessly spends the family money, leaving them in near financial ruin. Despite this, Williams and her children strive to find new ways to keep him safe and to connect with the husband and father they love so dearly.

Available from the Dementia Australia library in hard copy or Ebook


 

where the light gets inWhere the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley 

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 megastar Brad Paisley. But in 2014, Williams-Paisley revealed a tragic secret: her mother had been diagnosed with a rare form of dementia called primary progressive aphasia at the age of sixty-one.In Where the Light Gets In, Williams-Paisley tells the full story of her mother’s illness, from diagnosis through the present day, drawing on her memories of her relationship with the fascinating, complicated, and successful woman who raised her so well. She describes educating herself on her mother’s condition, letting go of the shame and secrecy that surrounded it, and finding unexpected humor and grace in a terrible situation. Her book also chronicles the ways in which her family’s bond was strengthened by the experience, to becoming an awareness advocate, to accepting the woman her mother has become.

Available from the Dementia Australia library in hard copy or Ebook


when love meets dementia

When Love Meets Dementia : Frontotemporal Degeneration (FTD) and the Family/ Ada Anbar (2019)

This volume examines FTD from a few angles, beginning with the author’s insightful memoir of her husband’s struggle with FTD and its impact on their family. Detailed background information on the disease is provided along with discussion of related issues.

Available from the Dementia Australia library in hard copy or Ebook


 

hodges frontotemporal dementiaHodges’ Frontotemporal Dementia  /  Dickerson, Bradford C. [ed.]  (2016)

Clinical and scientific interest in FTD and related disorders continues to grow rapidly, with major advances having occurred since this book’s last publication. New clinical diagnostic criteria were published in 2011; new pathological discoveries have led to new diagnostic criteria; and major genetic discoveries have been made. This new edition covers these developments, providing the leading resource on FTD, PPA, PSP, CBD, FTD-ALS, and related disorders, now written by a more internationally representative group of authors than before. Providing an in-depth and expert synthesis of the status of our knowledge of FTD and related syndromes, the content includes chapters reviewing clinical, neuropsychiatric, neuropsychological, imaging, and other features of FTD and multidisciplinary approaches to patient management.

Available from the Dementia Australia library


frontotemporal-dementia_2014Frontotemporal dementia by Bruce L. Miller (2014)

Frontotemporal Dementia provides an in-depth look at the history, various types, genetics, neuropathology and psychosocial aspects of one of the most common but least understood causes of dementia, frontotemporal lobar degeneration, from one of the world’s leading centres for the study of dementia. Aided by the latest research in diagnosis, mechanism and treatment, this book captures the rich and quickly changing landscape of a devastating neurodegenerative disease, and offers up-to-date clinical advice for patient care. Frontotemporal dementia, in particular, raises psychological and philosophical questions about the nature of self, free will, emotion, art and behaviour – important topics for practitioners and families to appreciate as they care for the person with dementia. This book includes case studies, photographs and figures from the leaders in the field and personal communication from the researchers driving these developments.

Available from the Dementia Australia library


human frontal lobeThe human frontal lobes : functions and disorders edited by Bruce L. Miller and Jeffrey L. Cimmings.  (2017)

Leading experts from multiple disciplines address the anatomy and chemistry of the frontal cortex, neuropsychological assessments of capabilities unique to the frontal lobes, the nature of (and possible treatment avenues for) frontotemporal dementia and related conditions, and implications for understanding and treating neuropsychiatric disorders, such as schizophrenia, mania, and depression.

Available from the Dementia Australia library


Websites

FTD Toolkit – Eastern Region Cognitive Disorders Clinic

ER FTD toolkit

The toolkit is organised into a series of stand-alone modules. Accompanying power point presentations for the main modules will be due for release by the end of 2011. The modules are designed to provide accessible summary level information without overwhelming amounts of specialist detail. Presentations may be used to train health professionals or provide community information sessions. All modules include reference to scientific publications, websites, and other resources where indicated.


The Association for Frontotemporal Degeneration (America)

This site has  easy to read helpsheets about some of the FTD sub-types and information about the FTD Disorders Registry (FTDDR) an international contact registry for people living with FTD and their families who would like to receive information updates about FTD and current research.

Visit website

 


Video

What is frontotemporal dementia? – Alzheimer’s Society UK (2017)

 


 

teepa snow_understanding frontotemporal dementiasUnderstanding Frontotemporal Dementias  /  with Teepa Snow  (2014)

Learn with Teepa Snow – Why proper screenings truly matter, and where to get them – About causes and symptoms of different types of FTDs – Which changes happen in the brain, and how they affect the person with FTD – How to deal with challenging behaviors without sacrificing the relationship – Which medications can help or potentially cause harm – How to best manage the disease with current treatment options – Why supportive communication and a positive physical approach are vital to offer the greatest quality of life, for the person with FTD and caregiver alike.

Preview


looks-like-lauryLooks like Laury, sounds like Laury (2015)

At the age of 45,  Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.
This film captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.
The film came about when her friend Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!”
Preview


Recent articles

Frontotemporal dementia: how we are failing families  /  Lynne Ramsay, F Katharina Reichelt and Ian James  (2019)
Frontotemporal dementia often manifests itself in behavioural changes rather than memory defects, yet it may go unrecognised. The consequences can be disastrous.
The Journal of Dementia Care Vol 27 No 1 January/February 2019 p.30-31

Frontotemporal dementia: the real lived experience  /  Reinhard Guss & colleagues  (2018)
Severe symptoms are to be expected in people with behavioural variant frontotemporal dementia, at lease according to the official diagnostic criteria. But is this always the lived experience? Interviews conducted which told a rather different story.
The Journal of Dementia Care Vol 26 No 5 September/October p. 28-30

Take the time to understand  /  Dennis Frost  (2018)
An excerpt of a speech at an event hosted by Dementia Australia, Parliamentary Friends of Dementia, at which presenters spoke about living with dementia. Dennis Frost was diagnosed with frontotemporal dementia shortly after his 59th birthday.
Australian Journal of Dementia Care Vol 7 No 4, Aug/Sep 2018, p10-11

 

Available from the Dementia Australia library

 

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Children, teenagers, young adults and dementia

 

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Dementia affects everyone in a family. Many resources are available for adults but only a few resources are specifically designed for the information needs of  children, teenagers and young adults  – indeed kids of all ages.
In a nod to National Children’s Week we take a closer look at some of the recent books, websites, articles  and blogs that support the younger members in our community.

 


Dementia in my family is a   comprehensive website catering to 5 broad age categories as well as a section talking directly to parents supporting a child who is living with dementia. Let’s take a closer look at some of the different resources offered by Dementia in My Family

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“Heather’s House” is an interactive game where children will learn more about how a person living with dementia might do things a little differently and how they can support them around the home. Heather’s house appears in the 5-8 and 9-12 yo sections under About dementia

 

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What can help?
This series of interactive cards featuring an appealing neuron, and assists children to identify the different feelings they may be experiencing through the course of a day.

 

 

There are a number of videos available on this website such as the following Talking dementia footage of teens discussing the impact of dementia on their lives.

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my book about brains, change and dementia

My book about brains, change and dementia/ Lynda Moore and George Haddon (2018)

‘Sometimes, a person’s brain gets sick with a disease called dementia.’
What does dementia do to the brain? And how can we help if someone we know, like a parent or a grandparent, has the disease?
Originally developed for the website above, this book breaks down misconceptions about dementia and speaks directly to children aged under 5 about the realities of the disease, using age appropriate language in an engaging and informative way. It reassures parents of the value of open and honest conversation about the challenges raised by dementia and offers advice and support in the opening ‘Guide for grown ups’. It includes a diverse audience of characters, to emphasise that ANY child can be impacted by dementia in their loved ones. Unlike traditional storybooks, the ending provides a question for the adult and child reading it to ponder together.


I smile for grandpaI smile for grandpa (2018)

When Grandpa is diagnosed with a dementia disease, Little Buddy realizes playing soccer together won’t quite be the same. But, while the activities that Grandpa can do are changing, there is still much fun to be had. In fact, spending time with each other is as special as ever!

Using delightful and tender illustrations, dementia is compassionately explored through the innocent eyes of a child to create a greater understanding of the disease. Tips for speaking with your child as well as a useful Q&A are also included to enhance learning.

 


grandma_forgetsGrandma forgets  /  Paul Russell and Nicky Johnston.  (2017)

Over the years, the little girl has built up a treasure trove of memories of time spent with Grandma: sausages for Sunday lunch, driving in her sky-blue car to the beach, climbing her apple trees while she baked a delicious apple pie, and her comforting hugs during wild storms. But now, Grandma can’t remember those memories. She makes up new rules for old games and often hides Dad’s keys. This is a warm, hopeful story about a family who sometimes needs to remind their grandmother a little more often than they used to about how much they care. She might not remember any of their names but she will always know how much she is loved.

 


forgetting-fosterForgetting Foster  /  Dianne Touchell  (2016)

Foster suddenly recognised the feeling that rolled over him and made him feel sick. It was this: Dad was going away somewhere all on his own. And Foster was already missing him.

Foster Sumner is seven years old. He likes toy soldiers, tadpole hunting, going to school and the beach. Best of all, he likes listening to his dad’s stories.

But then Foster’s dad starts forgetting things. No one is too worried at first. Foster and Dad giggle about it. But the forgetting gets worse. And suddenly no one is laughing anymore.
Ebook


beforeyouforgetBefore you forget  /  Julia Lawrinson.  (2017)

At times funny, at times heartbreaking, this is an ultimately uplifting story about the delicate fabric of family and friendship, and the painful realisation that not everything can remain the same forever.

Year Twelve is not off to a good start for Amelia. Art is her world, but her art teacher hates everything she does; her best friend has stopped talking to her; her mother and father may as well be living in separate houses; and her father is slowly forgetting everything. Even Amelia.


Blog post – Talking about dementia with very young children: why it helps and how to go about it   / Lynda Moore, Family clinician Dementia Australia, September 24, 2018

In this blog, Lynda Moore, family clinician at Dementia Australia  introduces the new picture book about dementia, which encourages good communication with children when someone in the family has dementia.
Answering questions like ‘What is dementia?’, ‘Why might parents, grandparents and teachers find it hard to talk about dementia with young children?’ Lynda outlines the benefits of having an open conversation with young children about the condition and how this new Dementia Australia book can help.

Link to Jessica Kingsley publishers blog

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Caroline Gelma, Kate Rhames (2018) “I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience. Dementia, Epub July 12
Abstract

Sikes, P., Hall, M. (2017). Every time I see him he’s the worst he’s ever been and the best he’ll ever be”: Grief and sadness in children and young people who have a parent with dementia. Mortality, 22(4), 324338
Abstract

Sikes, P., Hall, M. (2016). “It was then that I thought ‘whaat? This is not my dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia. Dementia17(2), 180–198.
Abstract

 


Related posts

Teens and young adults- dementia in fiction 2017

Dementia resources for young people 2016

Dementia resources for kids and teens 2013

 

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End of life and dementia

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End of life conversations can be challenging. That said,  it is unlikely that most of us don’t have some firm ideas of how we would like to conclude a life lived.

This post looks at a variety of considerations and discussions around this very important topic.


Dementia Australia resources

palliative care and dementia _ daPalliative care and dementia : Paper 43 (2018)
This Dementia Australia discussion paper provides guidance for health professionals on palliative and end-of-life care for people with dementia and those who support them.

Download paper

 

Start2Talk has been developed by Dementia Australia and our partners to help all Australians start the conversations involved in planning ahead.

 


making tough decisionsMaking Tough Decisions about End-of-Life Care in dementia  by Anne Kenny (2018)

In Making Tough Decisions about End-of-Life Care in Dementia, Dr. Anne Kenny, a skilled palliative care physician, describes how to navigate the difficult journey of late-stage dementia with sensitivity, compassion, and common sense. Combining her personal experience caring for a mother with dementia with her medical expertise in both dementia and end-of-life care, Dr. Kenny helps the reader prepare for a family member’s death while managing their own emotional health.

Drawing on stories of families that Dr. Kenny has worked with to illustrate common issues, concerns, and situations that occurs in late-stage dementia, this book includes practical advice about

• making life-altering decisions while preparing for a loved one’s inevitable death
• medical care, pain, insomnia, medication, and eating
• caring for the caregiver
• having conversations about difficult topics with other family members and with health care, legal, and financial professionals

Available from the Dementia Australia library in hard copy or Ebook


Ted talk: How my dad’s dementia changed my idea of death (and life)

Beth Malone (2017)

With warmth and grace, Beth Malone tells the deeply personal story of her dad’s struggle with frontotemporal lobe dementia, and how it changed how she thinks about death (and life). A moving talk about a daughter’s love — and of letting go and finding peace.

 


end of life careEnd of life care for people with dementia : a person-centred approach  /  Murna Downs, Laura Middleton-Green, Jane Chatterjee and Sarah Russell.  (2017)

This book describes not only what can be done to ensure maximum quality of life for those in the final stages of the illness, but also how best to support those involved in caring for them. Emphasising the importance of being attuned to the experiences and needs of the person with dementia, the authors explain why and how they should be included in decisions relating to their end of life care. Practical strategies for ensuring physical and emotional wellbeing are provided, drawing on useful examples from practice and providing solutions to potential challenges that carers and family members will face. Dilemmas surrounding end of life care are explored in detail, including the moral dilemma of medical intervention, and the authors suggest ways of supporting family members through the process in terms of providing information, helping them adjust to change and loss, and involving them in their relative’s care, and at how care staff can be supported through appropriate education and training, team building and information-giving.

Available from the Dementia Australia library in hard copy or Ebook


death talkerThe death talker : what we need to know to help us talk about death  /  Molly Carlile  (2016)

Since the dawn of time, human beings have been curious about death. Most of us have little time in our busy lives to think about the things that are important to us. Often, it s not until we have a personal experience that we give any serious thought to our own life and our mortality.

The Death Talker offers a common sense approach to the issues we should all be thinking about so we can live and die well. The personal stories and practical information provide a sensitive guide for exploring the stuff that matters to each of us and to help us have meaningful conversations with the people we love.

Molly Carlile AM has over twenty years experience as a specialist palliative care nurse, grief and bereavement counsellor and educator. More recently she has held senior executive roles in both palliative care and acute health, currently as Chief Executive Officer of a large metropolitan, community palliative care service.

Available from the Dementia Australia library


being mortalBeing mortal  /  Atul Gawande  (2014)

Medicine has triumphed in modern times, transforming the dangers of childbirth, injury, and disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they are allowed to eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that are actually shortening lives instead of improving them.

In his bestselling books, Atul Gawande, a practicing surgeon, has fearlessly revealed the struggles of his profession. Now he examines its ultimate limitations and failures-in his own practices as well as others’-as life draws to a close. Riveting, honest, and humane, Being Mortal shows how the ultimate goal is not a good death but a good life-all the way to the very end.

Available from the Dementia Australia library in hard copy or Ebook


good life to the end.jpgA Good Life to the End Taking control of our inevitable journey through ageing and death  / Ken Hillman (2017)

A huge majority of people at the end of their lives want to die at home, but only a small number manage to do this. This vital book asks why.

Professor Ken Hillman has worked in intensive care since its inception. But he is appalled by the way the ICU has become a place where the frail, soon-to-die and dying are given unnecessary operations and life-prolonging treatments without their wishes being taken into account.

A Good Life to the End will embolden and equip us to ask about the options that doctors in hospital should offer us but mostly don’t. It lets us know that there are other, gentler options for patients and their loved ones that can be much more sympathetic to the final wishes of most people facing the end of their lives.

Available from the Dementia Australia library in hard copy or Ebook


Website : Dying to talk – Palliative Care Australia
Dying to Talk aims to reach into the community to normalise dying in Australia and to help Australians work out what’s right for them at the end of their lives. Having a conversation with your loved ones about your end-of-life wishes will help them to make decisions on your behalf should you be unable to communicate your wishes. The Dying to Talk Discussion Starter guides you through talking with your loved ones.

http://dyingtotalk.org.au/


when breath becomes air.jpgWhen breath becomes air  /  Paul Kalanithi  (2016)
When Breath Becomes Air chronicles Kalanithi’s transformation from a medical student asking what makes a virtuous and meaningful life into a neurosurgeon working in the core of human identity – the brain – and finally into a patient and a new father.What makes life worth living in the face of death? What do you do when when life is catastrophically interrupted? What does it mean to have a child as your own life fades away?Paul Kalanithi died while working on this profoundly moving book, yet his words live on as a guide to us all. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient, from a gifted writer who became both.

Available from the Dementia Australia library in hard copy or Audio book 


2013 post    End of life planning and care for people with dementia

 

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