How do I choose?

Alzheimer’s Australia libraries combined have a collection of over 14,000 resources related to dementia. This year there have been in excess of 8500 loans from our collections.

Undoubtedly a great resource available to the community…but where do you begin?

When visiting the local bookshop we all welcome the influence of an award sticker or a book that proudly boasts itself a staff recommended read.  Taking inspiration from this and to assist our users to navigate our collection we have developed the Alzheimer’s Australia staff recommend sticker.

recommended-read-sticker

Our key criteria

  • Well written/produced
  • Consistently good feedback from borrowers
  • Positive reviews from specialist clinicians
  • The library staff loved it!

So what have our users been borrowing this year? Below is a selection from the top 20 in no particular order.

As always we welcome your feedback and would love to learn what would be on the top of your list.

DVD: Alive inside: A story of music & memory  /  A film by MRossato-Bennett  (2014)

Alive Inside DVDAlive Inside is a joyous cinematic exploration of music’s capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.

 

Green vanilla tea  /  Marie Williams  (2013)

green-vanilla-tea_smlWhen Marie Williams’ husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time — when gradually Dominic’s behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world.

DVD:  Glen Campbell…I’ll Be Me  (2014)

glen-campbellIn 2011, music legend Glen Campbell set out on an unprecedented tour across America. He thought it would last 5 weeks; instead it went for 151 spectacular sold out shows over a triumphant year and a half. What made this tour extraordinary was that Glen had recently been diagnosed with Alzheimer’s disease. He was told to hang up his guitar and prepare for the inevitable. Instead, Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ The film documents this extraordinary journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.

Fiction: Still Alice  /  Lisa Genova  (2009)

still alice movieAlice Howland is proud of the life she worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong.

 

Caring for a loved one with dementia : a mindfulness-based guide for reducing stress and making the best of your journey together  /  Marguerite Manteau-Rao  (2016)

caring-for-a-loved-oneAn approach to caring with calm, centered presence; responding  with compassion; and maintaining authentic communication, even in the absence of words. Most importantly,  discover ways to manage the grief, anger, depression, and other emotions often associated with dementia care.

 

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46  /  Christine Bryden  (2015)
before-i-forget-by-christine-bryden_sml

When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.

 

The 36-hour day : a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life  /  Nancy L. Mace, Peter V. Rabins  (2011)

36hrdayInformation on diagnostic evaluation; resources for families who care for people with dementia; legal and financial information;  information on nursing homes and other communal living arrangements; research, medications, and the biological causes and effects of dementia.

 

What the Hell Happened to My Brain? : Living with dementia  /  By Kate Swaffer   (2016)

what-the-hell-happened-to-my-brainKate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self.

DVD: Filling the day with meaning  /  Teepa L Snow (2011)

Through learning about what makes an activity engaging and valuable, how to create a safe and inviting environment and more with early-onset dementia patients, this DVD helps professional caregivers to provide the best care for people with dementia.

Loving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (2011)

loving-someone-who-has-dementiaOffers approaches to understand and cope with the emotional strain of care-giving. Boss’s book builds on research and clinical experience, yet the material is presented as a conversation. She shows you a way to embrace rather than resist the ambiguity in your relationship with someone who has dementia.

 

 

Recent dementia publications

This post identifies some recent publications on dementia. These books are all available from the library – if you can’t make it to our Hawthorn location we encourage you to call us on 03 9815 7800 and we can organise to send books to you. Remember, we do need you to be an Alzheimer’s Australia Vic member to provide this service.

Book: Where the Light Gets in : Losing My Mother Only to Find Her Again, Kimberly Williams-Paisley, Foreword by Michael J Fox, 2016

where the light gets inMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. “Where the Light Gets In” tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, “Where the Light Gets In” is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.”

DVD: Looks like Laury, Sounds like Laury, Pamela Hogan & Connie Shulman, 2015

looks like lauryWhat would you do if you started to disappear? At the age of 45, our friend 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.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.

The film came about when 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!” Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns. Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

We started filming during a hopeful period, with no idea of what lay ahead.

Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

Book: A caregiver’s guide to dementia : using activities and other strategies to prevent, reduce and manage behavioral symptoms, Laura N. Gitlin, Catherine Verrier Piersol, 2014

a caregiver's guide“Mom has nothing to do—I’m concerned about her quality of life.”
“My husband gets agitated when I need to leave the house—I don’t know what to do.”
“My father keeps asking the same questions over and over.”

These are some of the common challenges encountered by individuals and families who are caring for a parent, spouse or close relative with dementia. This easy-to-use, practical guide is designed to help at-home caregivers navigate these daily challenges. Although there is no cure for dementia or its many behavioral symptoms, there are clear and proven strategies that can be used to enhance the quality of life for persons with dementia—strategies that can make a real difference for their families.
A Caregiver’s Guide to Dementia explores the use of activities and other techniques to prevent, reduce and manage the behavioral symptoms of dementia. Separate sections cover daily activities, effective communication, home safety and difficult behaviors, with explicit strategies to handle] agitation, repetitive questions, acting-out, wandering, restlessness, hoarding, resistance to care, incontinence, destructiveness, sexually and socially inappropriate acts at home and in public, aggressiveness, depression. Worksheets are provided to help caregivers customize the strategies that work best for them.
The strategies featured in this guide have been used by the authors in their research and reflect approaches and techniques that families have found to be most helpful.

Book: Dementia: pathways to hope : spiritual insights and practical advice, Louise Morse, 2015

dementia pathways to hopeTo be diagnosed with dementia is “like being blindfolded and let loose in a maze”. There is no clear treatment to follow, because each case is unique. But once thickets of misunderstanding and misinformation are brushed aside, there are pathways to hope.

“Secular models of support don’t adequately reflect Christian values of compassion, love and service,” explains Louise Morse. “Neither do they describe the power of spiritual support. This is key to the wellbeing of the caregiver, as well as the person with dementia.”

This book is packed with examples of what works, as well as practical advice and accessible medical information.

Louise Morse is a cognitive behavioural therapist and works with a national charity whose clients include people with dementia. Her MA dissertation, based on hundreds of interviews, examined the effects on families of caring for a loved one with dementia.

Fiction: Unbecoming, Jenny Downham, 2015

unbecomingThree women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

 

YouTube: Living with Dementia, Alzheimer’s Australia, 2016

This is also available as a DVD from our library.

Still Alice

still alice movieIn January 2015 a film version of the book Still Alice by Lisa Genova was released. This film has received critical acclaim and to date, has won multiple awards.

If you’ve read Still Alice or seen the film you already know that it is a story of a psychology professor Alice Howland (played by Julianne Moore) who is diagnosed with early onset Alzheimer’s disease. The story describes her life from early warning signs, through diagnosis and then follows her progress through the onset of symptoms. It eloquently illustrates the impact of Alzheimer’s disease for Alice and for her family.

This post includes articles prompted by the release of the film Still Alice—reviews, commentaries and a podcast. It is not an exhaustive list, but rather a small sampler of the discussions initiated by Still Alice’s cinematic interpretation.

Remember, we have copies of the novel version of Still Alice in the Alzheimer’s Australia VIC library. Here’s a link to a review of the book on this blog – scroll down a bit, the review of Still Alice is lower on the page. You can contact us or come and visit us if you’d like to borrow a copy.

Once the film is released on DVD you will also be able to borrow a copy of the film from our library.

Article: Still Alice is ‘shockingly accurate’ – people living with dementia give their verdict, Tom Seymour, 11 February 2015, The Guardian

Julianne Moore is an Oscar favourite for her portrayal of a woman with dementia in Still Alice. But what do people with the condition think of the film?

megaphonePodcast: A review of the film Still Alice, panel discussion by Alzheimer’s Australia Dementia Research Foundation, Episode 25.

On January 29, Still Alice was released in Australian cinemas, a movie based on fictional character Alice Howland from her dementia diagnosis through to onset of symptoms. Throughout the movie Alice slowly but inevitably loses memory and connection with reality. She gradually loses the ability to follow a conversational thread, the story line of a book, or to recall information she heard just moments before. All common dementia symptoms. Many film critics are raving about Julianne Moore’s portrayal of Alice, and she has already won a Golden Globe award for best actress and is number 1 pick to win a prestigious Oscar. So what do others think of the movie, particularly those who are close to the cause and is the movie sending the right messages about ‘what is dementia?’ While the overall view of the movie is positive, some critics do say the film is overly “pristine” and “shies away from taking risks”, while also not being plausibly representative of the typical experience of dementia in choosing to focus on an “almost perfect … privileged family.” Others ask if it focuses enough on the latter stages, along with the impact placed on families and carers. In this special extended episode of the Dementia News I am pleased to have joining with me, three expert panellists, Dr Siobhan O’Dwyer (Griffith University), Dr Andrew Watt (Florey Institute of Neuroscience and Mental Health) and Jill Brown (Alzheimer’s Australia ACT), to give their views of the movie and discuss just how close to real life it is.

Article: ‘Hollywood’ movie sparks dementia conversation, DPS News

It is expected that a new Hollywood movie, starring a lineup of well known actors, will lead to greater awareness of the ‘enormous’ dementia challenge facing Australia, particularly those experiencing younger onset dementia.

the conversationArticle: Still Alice, and the advocacy for Alzheimer’s in fiction, Matthew Wade, 29 January 2015, The Conversation

Still Alice – starring Julianne Moore – tells the story of Alice Howland, a linguistics professor diagnosed with a form of early-onset Alzheimer’s Disease. Moore has already netted a Golden Globe and is clear favourite for a well-deserved Best Actress Oscar next month.

The novel on which the film is based is one of a clutch of debuts in recent years to explore forms of neurodegenerative disease. So what role does fiction play in our understanding, and acceptance, of dementia?…

 

Films about dementia

A growing collection of resources exists about dementia – extensive research articles, non-fiction, fiction, memoirs, poetry and film. Today’s post covers three films about dementia—or dementia-like symptoms—and the impact dementia has on the person with dementia, those caring for them and others in their life.

We have many more films available about dementia, so don’t hesitate to come in and see us if you’d like to find out more about our film collection. If you’re interested in any of these titles, you can request them here – remember, you have to be a member of Alzheimer’s Australia Vic.

Still mine, 2012still mine

This is an intimate portrait of Frank, a man in his late eighties who finds himself caring for his wife of 61 years. Whilst no formal diagnosis is ever made, it is apparent that Irene has dementia and requires more support to continue to live at home. Facing the realities of their changing circumstances, Frank decides to build a dwelling more suitable than their long-term family home and is thrust into the contemporary world of permits, plans, building codes and the consequences of not complying with these restrictions.

Whilst taking on more tasks within the home, to compensate for Irene’s changing abilities, Frank also contends with the concerns of his seven children and their preference to have Irene, or possibly both Frank and Irene, getting professional care or support.

Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.

fireflyFirefly dreams, 2004

A Japanese sub-titled film about a troubled teenage girl who forges an unlikely friendship with an older person with dementia, becoming her carer and companion. This coming of age story focuses on 17 year old Naomi, sent to spend the summer holidays with her aunt in a small Japanese village whilst her parents navigate their separation and increasing inability to cope with Naomi’s behaviour. Initially, Naomi is stifled by the slower pace and physical demands of working with her aunt’s family in the hotel they run. She misses the city and is frustrated by her cousin, Yumi. Naomi goes to visit Mrs Koide, whom she knows from her childhood and at first is baffled by the inconsistencies in her elderly relative’s behaviour. As the summer passes, Naomi grows closer to Mrs Koide and her aunt’s family and whilst sometimes puzzled by Mrs Koide’s abrupt changes of topic, she tolerates and supports Mrs Koide’s needs.

Dementia is not overtly referred to in this film and the carer role that Naomi occupies is quite lightweight – focused on companionship rather than the day-to-day requirements of caring. The representation of dementia in this film focuses on some fairly mild forgetfulness, the person with dementia revisiting and re-enacting key past life experiences and some hospitalisation scenes.

In this film, the person with dementia dies and the implication is that her death was directly linked to dementia.

finding-nemo-dvdFinding Nemo, 2003

Although not immediately a dementia film, in Finding Nemo the character of Dory exhibits dementia-like symptoms which may help a younger child understand and experience dementia in a film.

This film, about a fish called Marlin looking for his lost son, Nemo, with the help of an often-forgetful and distracted fish called Dory. Dementia is not directly referred to in the film. Instead, Dory describes her condition as ‘short term memory loss that runs in the family’. As a result, the short term memory issues that can be experienced as part of dementia are front-and-centre, however the film also showcases Dory as a real person, not a caricature and someone who is able to contribute in her own right to her friend’s predicament. It shows some of the challenges of dementia, where some very routine procedural activities remain perfectly intact whilst other newer memories are tenuous and readily forgotten.

Finding Nemo also deals with Dory’s own anxiety, frustration and sometimes sadness with the limitations of her short term memory issues.

Overall, for younger children this could be a good film as a discussion piece to expand on a child’s experience of dementia and perhaps through Dory, their feelings about dementia.

 

 Note: these reviews are the opinion of an individual, and do not represent the views of Alzheimer’s Australia, or Alzheimer’s Australia VIC.