Recent dementia publications

Posted on June 3, 2016 by Dementia Australia Library

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

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

unbecoming Three 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.

Paro – therapeutic robot seal

Posted on February 19, 2016 by Dementia Australia Library

Image of Paro the seal with Jean Wilson. Photograph by Chris Hopkins

PARO is an interactive robotic seal. This cuddly and responsive robot provides undemanding interactions and can deliver outcomes similar to animal-assisted therapy.

Today’s post is about PARO and the benefits it can provide to people with dementia.

PARO is a therapeutic robot in the form of a baby seal, developed in Japan to respond to touch, light, sound, temperature and positioning.

PARO has been shown to have a positive psychological effect on people living with dementia, improving their relaxation and motivation. It can also improve the socialisation of patients with each other, and with caregivers. PARO responds to sound and can even learn common words over time, such as its chosen name.

Article: Exploring the Effect of Companion Robots on Emotional Expression in Older Adults with Dementia: A Pilot Randomized Controlled Trial by Wendy Moyle [et al], Journal of Gerontological Nursing, Vol. 39, No. 5, May 2013, p.46-53

This pilot study aimed to compare the effect of companion robots (PARO) to participation in an interactive reading group on emotions in people living with moderate to severe dementia in a residential care setting. A randomized crossover design, with PARO and reading control groups, was used. Eighteen residents with mid- to late-stage dementia from one aged care facility in Queensland, Australia, were recruited. Participants were assessed three times using the Quality of Life in Alzheimer’s Disease, Rating Anxiety in Dementia, Apathy Evaluation, Geriatric Depression, and Revised Algase Wandering Scales. PARO had a moderate to large positive influence on participants’ quality of life compared to the reading group. The PARO intervention group had higher pleasure scores when compared to the reading group. Findings suggest PARO may be useful as a treatment option for people with dementia; however, the need for a larger trial was identified.

Note: should you be interested in this article please request it through our handy form.

Website: PARO Therapeutic Robot

The official PARO website, includes information on PARO and an extensive library of research papers on PARO which you can obtain by request.

Television show: Trusting Robots, SBS Insight, 21 April 2015

From the SBS Insight website:

“Stephen Hawking recently warned that the development of full artificial intelligence (AI) systems could spell the end of the human race.

From agriculture and manufacturing to education and medicine, some experts are predicting a future where blue and white collar workers will soon be replaced.

Technological progress has seen robots become more sophisticated, so what will be the economic impact of AI?

Could we actually be entering an age of abundance for humans catered to by robot slaves?

Insight asks: Is humanity really being threatened by thinking robots, and where will robotic advances take us into the future?

What are the ethical and moral questions to consider?”

Guests include Professor Wendy Moyle who discusses a trial using PARO during the show.

Professor Moyle is Director of the Centre for Health Practice Innovation: “We’ve got a very large trial running with over 400 people with dementia… and we’re looking at whether (the robot) makes a difference to them in terms of emotional response… ”

Image of Paro the seal with residents. Photograph by Chris

Music and dementia

Posted on November 20, 2015 by Dementia Australia Library

Music has a transformative effect on people. Whether young, old, happy, sad, with dementia, without dementia, music enriches our lives and helps us access cherished memories. Today’s post provides information on resources about the importance of music to people with dementia and the potential for music to contribute to a higher quality of life in myriad ways.

Book: Connecting through music with people with dementia : a guide for caregivers by Robin Rio, 2009

For people with dementia, the world can become a lonely and isolated place. Music has long been a vital instrument in transcending cognitive issues; bringing people together, and allowing a person to live in the moment. Connecting though Music with People with Dementia explains how a caregiver can learn to use melody or rhythm to connect with someone who may be otherwise non-responsive, and how memories can be stimulated by music that resonates with a part of someone’s past.

This user-friendly book demonstrates how even simple sounds and movements can engage people with dementia, promoting relaxation and enjoyment. All that’s needed to succeed is a love of music, and a desire to gain greater communication and more meaningful interaction with people with dementia. The book provides practical advice on using music with people with dementia, including a songbook suggesting a range of popular song choices and a chapter focusing on the importance of caregivers looking after themselves as well as the people they care for.

Suitable for both family and professional caregivers with no former experience of music therapy, and for music therapy students or entry level professionals, this accessible book reveals many useful techniques used in music therapy by experienced professionals.

Article: Music therapy: A nonpharmacological approach to the care of agitation and depressive symptoms for nursing home residents with dementia by Kendra D Ray and Mary S Mittleman, Dementia October 29, 2015

Depression, agitation, and wandering are common behaviors associated with dementia and frequently observed among nursing home residents. Even with pharmacological treatment, behaviors often persist, hindering quality of life for elders, their family, and paid caregivers. This study examined the use of music therapy for treatment of these symptoms among 132 people with moderate to severe dementia in nursing homes. Participants were evaluated for depressive symptoms, agitation, and wandering to determine their predominate behavior. There were two assessments, two weeks apart, prior to intervention, followed by a two-week intervention, and two follow-up assessments, also two weeks apart. A repeated measures ANOVA determined that after two weeks of music therapy, symptoms of depression and agitation were significantly reduced; there was no change for wandering. Multivariate analyses confirmed a relationship between music therapy and change in neuropsychiatric symptoms associated with dementia. Results suggest widespread use of music therapy in long-term care settings may be effective in reducing symptoms of depression and agitation.

Note: should you be interested in this article please request it through our handy form.

DVD: Alive inside: A story of music & memory. A film by Michael Rossato-Bennett, 2014

Alive 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.

You can view the trailer for this wonderful film below:

Radio program: Music of memory – All In The Mind, Radio National, Sunday 8 November 2015 5:05PM

All In The Mind explores the work documented by the documentary Alive Inside. This radio program is available as on-demand, a downloadable audio file or a written transcript. Below is an excerpt from their synopsis:

“Our relationship with music begins at birth, if not before, and plays a role in the formation of our identity when we are young. Now a heart-warming movement called Music & Memory is creating personalised music playlists for residents with dementia in nursing homes—who use their mobile device to hear it.” RN All In The Mind website, accessed 20 November 2015.

Article: But does it do any good? Measuring the impact of music therapy on people with advanced dementia: (Innovative practice) by Karen Gold. Dementia 2014 13(2) p.258-264

This article describes the impact of music therapy upon a group of nine people with advanced dementia in a hospital setting. It demonstrates how the impact of music therapy was measured using the case notes completed by nursing and care staff and how these notes suggested that music therapy had a positive effect on the mood and behaviour on eight of the nine people receiving music therapy.

Note: should you be interested in this article please request it through our handy form.

Report: Sustaining the note of hope: Music, dementia and meaningful lives by Marsaili Cameron and Belinda Sosinowicz , 2013

The report draws on the presentations, discussions and stories from a creative multidisciplinary seminar in order to:
• outline the emerging shape of dementia services in the UK, and the potential contribution of the arts, especially music, to dementia care.
• offer examples of current excellent practice in this area and provide a list of useful resources.
• provide an overview of the evidence underpinning music and dementia programmes and suggest constructive approaches to evaluation.
• explore the benefits of music and dementia programmes for different stakeholders in different settings, including people with dementia, management and staff of care and support organisations, musicians, commissioners of services and programmes.
• identify the key challenges that need to be met in order for music and dementia activity to grow, along with potential responses to these challenges.
• propose ways of continuing, sharing and expanding the learning from the seminar.

How can you use it?
• to understand the depth and breadth of the potential contribution of music to dementia care.
• to draw on work already done in the field and to make contact with those involved in this work.
• to create dialogue across artistic, academic, clinical and managerial groups about how music can be used effectively in different care settings for people with dementia.
• to develop evidence-based programmes.
• to make a case for funding music-based initiatives and research.

Article: Music-Assisted Bathing: Making Shower Time Easier for People with Dementia by Kendra D. Ray, Suzanne Fitzsimmons. Journal of Gerontological Nursing Vol.40, No. 2, 2014, p.9-13

It is estimated that 90% of nursing home residents need assistance with bathing. The purpose of this article is to describe a music-assisted care technique that can be used by caregivers when bathing nursing home residents with dementia. Research suggests that music has many therapeutic benefits for people with dementia. Using music to soothe anxiety can be an effective intervention to assist with lessening of agitation during activities of daily living, especially bathing. This article will provide nursing and direct care staff tools to successfully conduct the music-assisted bathing protocol. Consideration for choosing appropriate music for bathing, the creation of individualized personalized playlists, and acknowledgement of desired outcomes are presented. Incorporating music-assisted bathing may address neuropsychiatric symptoms of dementia by lessening agitation and improving mood, which in turn can increase job satisfaction.

Note: should you be interested in this article please request it through our handy form.

Book: Music therapy and neurobiological rehabilitation : performing health / Edited by David Aldridge (2005)

The central tenet of this innovative collection is that identity can be regarded as a performance, achieved through and in dialogue with others. The authors show that where neuro-degenerative disease restricts movement, communication and thought processes and impairs the sense of self, music therapy and neurological rehabilitation can help to restore the performance of identity within which clients can recognise themselves. Emphasis is placed on identity as a chosen performance, not one imposed by a pathological process – the individual is not defined by the disease. The authors show that music therapy is an effective intervention in neurological rehabilitation, successfully restoring the performance of identity within which clients can recognise themselves. It can also aid clients affected by dementia, traumatic brain injury, and multiple sclerosis, among other neuro-generative diseases. Music Therapy and Neurological Rehabilitation is an authoritative and comprehensive text that will be of interest to practicing music therapists, students and academics in the field.

Chapter four of this book focuses on the role of music therapy as an intervention for people with dementia.

Article: ‘That was an amazing one!’ Music therapy in dementia care by Elizabeth Nightingale, The Journal of Dementia Care, Vol. 23, No. 2, March/April 2015

The story of how music therapy helped to restore one man’s individuality and his relationship with his partner.Elizabeth Nightingale is a music therapist with adults with dementia.

Note: should you be interested in this article please request it through our handy form.

Article: The healing power of music by Vanessa Solomon, Australian Journal of Dementia Care, Vol. 3, No. 1, February/March 2014, p.17-18

Music therapy for people with dementia has been well-documented in many peer-reviewed academic journals, but it is still a relatively underused practice for supporting people with dementia. As a Registered Music Therapist (RMT), I personally experience the benefit of using music therapy for people with dementia, and believe it is one of the most accessible person-centred interventions. It is cost-effective for residential aged-care facilities and enjoyable for residents, staff and families. The best part is that it can facilitate meaningful experiences for people involved in all stages of dementia and is a way of involving their families.

Note: should you be interested in this article please request it through our handy form.

Article: Dementia: Music to their ears by Diana Kerr, Australian Ageing Agenda, March – April 2014, p.52-53

There is a substantial body of evidence showing the crucial role that music plays in support of people with dementia, writes Diana Kerr.

Note: should you be interested in this article please request it through our handy form.

Montessori methods for people with dementia

Posted on October 16, 2015 by Dementia Australia Library

Montessori methods are now a popular and powerful way to support the lives and capabilities of people with dementia. This post and a previous post offer resources on Montessori activities and how to implement Montessori-based activities.

2017 update

Website: Purposeful activities for people with dementia: a resource,

Purposeful Activities for Dementia is a Montessori-based professional development and education resource developed for aged care and dementia care staff and carers.

Purposeful activities for Dementia complements other professional development resources about engaging people with Alzheimer’s disease and other dementias, including the downloadable Relate Motivate Appreciate toolkit. Purposeful activities for dementia was developed by Alzheimer’s Australia VIC for families and aged care staff.

Purposeful Activities for Dementia offers practical ways that carers – including activity support workers, personal care attendants and other aged care professionals – can work together to engage people living with dementia in purposeful activities at home and in social groups.

The videos by Alzheimer’s Australia VIC on this website explore the way in which Montessori techniques can enrich the lives of people living with dementia. Many of the educational activities in the following video are based on this approach.

Article
Effects of using nursing home residents to serve as group activity leaders: Lessons learned from the RAP project by Michael J. Skrajner, Jessica L. Haberman, Cameron J. Camp, Melanie Tusick, Cristina Frentiu, and Gregg Gorzelle, Dementia: The international journal of social research and practice, Volume 13, Number 2, March 2014

Previous research has demonstrated that persons with early to moderate stage dementia are capable of leading small group activities for persons with more advanced dementia. In this study, we built upon this previous work by training residents in long-term care facilities to fill the role of group activity leaders using a Resident-Assisted Programming (RAP) training regimen. There were two stages to the program. In the first stage, RAP training was provided by researchers. In the second stage, RAP training was provided to residents by activities staff members of long-term care facilities who had been trained by researchers. We examine the effects of RAP implemented by researchers and by activities staff member on long-term care resident with dementia who took part in these RAP activities. We also examined effects produced by two types of small group activities: two Montessori-based activities and an activity which focuses on persons with more advanced dementia, based on the work of Jitka Zgola. Results demonstrate that levels of positive engagement seen in players during RAP (resident-led activities) were typically higher than those observed during standard activities programming led by site staff. In general, Montessori-Based Dementia Programming® produced more constructive engagement than Zgola-based programming (ZBP), though ZBP did increase a positive form of engagement involving observing activities with interest. In addition, RAP implemented by activities staff members produced effects that were, on the whole, similar to those produced when RAP was implemented by researchers. Implications of these findings for providing meaningful social roles for persons with dementia residing in long-term care, and suggestions for further research in this area, are discussed.

Note: should you be interested in this article please request it through our handy form.

Book: You say goodbye and we say hello : the Montessori method for positive dementia care by Tom and Karen Brenner, ©2012

This book aims to help dementia caregivers connect with their loved ones-in sometimes surprising ways.

Caregiving for a person with dementia or Alzheimer’s disease can be fraught with frustration, but it all can be rewarding in ways that may surprise a caregiver. Getting to those rewarding moments is the subject of You Say Goodbye and We Say Hello, a new book by husband-and-wife team Tom and Karen Brenner.

You Say Goodbye and We Say Hello is an inspiring, eye-opening look into how using The Montessori Method for memory support and creating a positive environment can deepen the connection between caregivers and the people they love. – Sam Gaines, Managing Editor, Preserving Your Memory Magazine

Article: Montessori based dementia programming® by Michael J. Skrajner [et al] Alzheimer’s Care Quarterly, Vol. 8, Issue 1, January/March 2007, p. 53-63

Montessori-Based Dementia Programming® (MBDP) is a method of creating and presenting activities/interventions. The Myers Research Institute conducted several studies, each of which involved the use of MBDP in a different setting/situation. Staff members from nursing homes, adult day centres, and assisted living facilities were trained to implement MBDP, as were family members and even persons in the early stages of dementia. In addition, a Montessori-based assessment tool is being developed for use in restorative nursing for persons with moderate to advanced dementia. An overview of each study is provided, as are the findings and implications of each study.

Note: should you be interested in this article please request it through our handy form.

Report: Evaluation of Montessori principles in planned activity groups for people with dementia, Australian Centre for Evidence Based Aged Care, La Trobe University, 2015

In 2014, Alzheimer’s Australia Victoria implemented a pilot project to evaluate the impact of Montessori-based activities on the engagement of people with dementia attending planned activity groups (PAG) at two sites in metropolitan Melbourne, Victoria. Funding for the project was provided by the Commonwealth and Victorian governments under the Home and Community Care (HACC) Program. The overall goal of the project was to improve the engagement of people with dementia in purposeful activity by incorporating Montessori principles in planned activity groups.

Findings show that the application of the Montessori principles to activities statistically improved constructive engagement, pleasure and helping among clients in the two participating planned activity groups. The findings also suggest that the Montessori education may improve staff satisfaction and attitudes to people with dementia.

Article: Montessori programming for persons with dementia in the group setting:an analysis of engagement and affect by Shannon E Jarrott, Tsofit Gozali & Christina M Gigliotti, Dementia, Vol. 7, no. 1 February 2008, p. 109-125

Implementing meaningful activities for persons with dementia reduces boredom, agitation, and negative affect. Previous research demonstrated that Montessori activities, modified for persons with dementia, facilitate positive engagement and affect. We conducted activities in small parallel group settings to support social interactions and reflect typical staff-to-client ratios in institutional activity settings. The amount and type of engagement and affect were compared during Montessori-based activities and regularly scheduled activities of 10 older adults with dementia at an adult day program. Participants exhibited more constructive engagement and less non-engagement during Montessori-activities compared to regular activities. Affect did not differ between the activity conditions. We conclude with a discussion of research and practice methodology modifications.

Note: should you be interested in this article please request it through our handy form.

Blog: The Montessori Approach for people with dementia, Dementia Resources blog, July 2013

Montessori is a topic close to my heart. Part of my own schooling was Montessori and my children attend a Montessori school. For me, what really appeals is the dignity and respect which the students are afforded. The sense of satisfaction and well-deserved pride they derive from mastering an activity is heart-warming to see. When I discovered that the Montessori principles were also enriching the lives of people with dementia I was really excited. It’s such a natural extension of this incredibly flexible, carefully-constructed and intelligent educational philosophy.

This post includes a number of Montessori resources including those of Cameron J. Camp and the popular Relate Motivate Appreciate resource produced by Alzheimer’s Australia VIC.

Gardens for people with dementia

Posted on June 26, 2015 by Dementia Australia Library

Ah, gardens! Fabulous places. Outdoor spaces are an important part of human life. They offer opportunities for relaxation, connection with nature, the chance to nurture and care for living things and the sensory benefits of sunlight, fresh air, soil and water. Today’s post offers resources on garden design for people with dementia, the benefits of gardens for aged care facilities and how to successfully implement both outdoor and indoor gardens.

Dig in!

Book: Creating Culturally Appropriate Outside Spaces and Experiences for People with Dementia: Using Nature and the Outdoors in Person-Centred Care edited by Mary Marshall and Jane Gillard

Demonstrating that it is essential to be sensitive to the cultural backgrounds of people with dementia in order to provide truly person-centred care, this book shows that it is possible to create culturally appropriate outdoor spaces and experiences that resonate with people with dementia on a fundamental level and are a source of comfort and well-being.

Contributors drawn from a variety of backgrounds describe the significance of nature in the lives of people with dementia from diverse cultures, faiths, traditions and geographical locations, providing helpful insights into how access to the natural world may be achieved within different care settings. There are contributions from the UK (Scottish island, urban North East England and Norfolk farming communities), Canada, Norway, Japan, Australia, Sudan and South Africa, as well as a chapter on the specific difficulty of providing access to nature for people with dementia in hospitals. The voices of people with dementia and their carers are prominent throughout, and the book also contains evocative poetry and photographs of people with dementia enjoying nature and the outdoors in different contexts.

A rich source of information and ideas for all those interested in creating culturally appropriate outdoor spaces and experiences for people with dementia, including dementia care practitioners, especially those at managerial level, policy makers, commissioners and those involved in designing and commissioning buildings and services.

Article: Multisensory Installations in Residential Aged-Care Facilities: Increasing Novelty and Encouraging Social Engagement through Modest Environmental Changes by Theresa L. Scott, Barbara M. Masser, Nancy A. Pachana, Journal of Gerontological Nursing, 40(9), 20–31

The current study examined the effect of an indoor simulated garden installation that included visual, auditory, and olfactory stimuli on resident well-being, compared to the effect elicited by a reminiscence installation and a control no-installation condition. A quasi-experimental ABA design was used (i.e., two intervention conditions plus a wait-list control condition). A survey instrument was administered to nursing home residents (N = 33) at three time points (pre-, during, and post intervention) over an 8-week period, which measured mood, behavior, health, and social interaction. Additionally, staff reports (N = 24) were collected. Both the nature-based and non-nature-based installations led to enhanced well-being and significantly more social benefits for residents because of their novel and aesthetic appeal, compared with the control condition. Residents in the nature-based installation condition reported more satisfaction with their living environment during the intervention phase than those in the comparison conditions. The results show that an indoor garden simulation is a relatively inexpensive way to transform a disused indoor area of an aged-care facility for the benefit of residents and staff.

Note: should you be interested in this article please request it through our handy form.

Book: Designing outdoor spaces for people with dementia edited by Annie Pollock and Mary Marshall

In many facilities for people with dementia, there is often little or no access to the outdoors and to fresh air. Research shows that there are considerable benefits that come from spending time outdoors and having a good view out from a building. So, why is it that people living with dementia, often have poor access to outside spaces and the benefits that come from being outside?

‘Designing Outdoor Spaces for People with Dementia’ is a book that discusses how to effectively use outside spaces for people with dementia. The book is not an academic guide to research but a book for people in practice. It is filled with case studies of real examples from all over the world. The book is edited by internationally respected Mary Marshall and Annie Pollock.

Featuring authors from Japan, USA, Australia and Norway as well as the UK, the book provides a review of evidence based research supporting the importance of access to outdoor spaces; understanding how to use outdoor spaces appropriately and case studies from around the world describing how to develop and utilise well designed spaces for people with dementia.

The book is written for people who own and commission buildings for people with dementia, Architects and Landscape Architects, Managers of facilities for people with dementia, Medical, nursing and care staff as well as professions allied to medicine such as occupational therapists and physiotherapists and relatives of people with dementia and people living with dementia.

Article: Designing a garden for people with dementia – in a public space by Sally Furness and Jo Moriarty, Dementia, Vol. 5, no. 1 February 2006 p. 139-143

Charlecote Park is a Tudor house in Warwickshire, UK where Shakespeare is rumoured to have been once caught poaching. It is set in a deer park that was originally designed by Capability Brown, the famous British 18thcentury landscape gardener who was responsible for redesigning many of the gardens owned by the aristocracy of the time. Both house and garden are now owned by the UK’s National Trust and they are open to the public for the majority of the year. In 2002, the South Warwickshire branch of the Alzheimer’s Society commissioned Sally Furness to manage the creation of a therapeutic garden within a designated plot at Charlecote Park. The choice of site was important. Not only is the park an attractive place that is popular with visitors during the summer but, by integrating a garden for people with dementia into a public space, it was intended to help improve public awareness of the condition.

Note: should you be interested in this article please request it through our handy form.

Article: The Grange Garden Project : A garden for people with dementia – in a day centre by Maggie Weatherby and Jo Moriarty, Dementia, Vol. 5, no. 1 February 2006 p. 143-146

The Grange is a day centre for people with dementia located in north London and run by Haringey council. Although there was a garden at the rear of the building, it consisted of little more than a lawn, two or three mature trees, some overgrown shrubs and a summerhouse. Unsurprisingly, given the unstimulating environment, it was rarely used. This changed in 2002 when Olive Harper, one of the committee members of the Haringey Branch of the Alzheimer’s Society decided to apply for an After Dementia Millennium Award organized by the Alzheimer’s Society. These awards were funded by the Millennium Commission and consisted of grants for carers and former carers of a person with dementia to help them rebuild their lives and make links with their community during and after their caring role. She decided that she would apply for a grant to help set up a Grange Garden Carers Group. The group members wanted to develop the garden as a way of ‘giving something back’ in return for the support that they had received from the centre and to improve the quality of the environment for people with dementia, carers, and staff by providing somewhere in which people could relax, undertake simple horticultural tasks and keep in touch with nature through sensory stimulation.

Note: should you be interested in this article please request it through our handy form.

Article: Parkview House : A garden for people with dementia – in a care home by Simon Pollitt and Jo Moriarty, Dementia, Vol. 5, no. 1 February 2006 p. 146-149

Parkview House opened in 1993 as a care home for people with dementia in north London. It is owned by Sanctuary Housing Association and managed by 2Care, an independent charity supporting older people and people with mental health needs. The building itself is a modern two-storey design and is located in a residential area next to a park. Forty-five people live in the home and the intention is that they should be offered a home for life wherever possible.

Note: should you be interested in this article please request it through our handy form.

Book: Designing balconies, roof terraces and roof gardens for people with dementia by Mary Marshall, Emeritus Professor, University of Stirling

This book is one of a series to assist providers, architects, commissioners and managers to improve the design of buildings which are used by people with dementia. The book has been produced in response to an increasing number of requests for advice about the provision of outside space for buildings of more than one storey. As land values increase and people wish to remain in familiar inner city areas, we are more likely to see higher multi-storey care homes. This book describes practical ways in which new and existing buildings can maximise opportunities for people with dementia to access outside space using balconies, roof terraces and roof gardens.

Article: ‘Why don’t we go into the garden?’, Mark Rendell and Debbie Carroll, Australian Journal of Dementia Care, Vol. 4, No. 3, June/July 2015, p.32-35

Garden designers Mark Rendell and Debbie Carroll collaborated in 2013 to research why gardens around care homes, particularly for people with dementia, were not being used more. Here’s their story.

Note: should you be interested in this article please request it through our handy form.

Article: Sowing seeds of well-being, Cath Manuel, Australian Journal of Dementia Care, Vol. 4, No. 3, June/July 2015, p.35

Cath Manuel runs a weekly gardening program for people with dementia on Queensland’s Sunshine Coast. She explains how it works and the joy it brings.

Note: should you be interested in this article please request it through our handy form.

Article: Delighting the senses, Australian Journal of Dementia Care, Vol. 4, No. 3, June/July 2015, p.35

Use of gardens in Resthaven aged care service, South Australia.

Note: should you be interested in this article please request it through our handy form.

Book: Healing gardens : therapeutic benefits and design recommendations edited by Clare Cooper Marcus, Marni Barnes, 1999.

Unique and comprehensive, Healing Gardens provides up-to-date coverage of research findings, relevant design principles and approaches, and best practice examples of how for more and more people, the shortest road to recovery is the one that leads through a healing garden. Combining up-to-date information on the therapeutic benefits of healing gardens with practical design guidance from leading experts in the field, Healing Gardens is an invaluable guide for landscape architects and others involved in creating and maintaining medical facilities as well as an extremely useful reference for those responsible for patient care. With the help of site plans, photographs, and more, the editors present design guidelines and case studies for outdoor spaces in a range of medical settings, including: acute care general hospitals; psychiatric hospitals; children’s hospitals; nursing homes; Alzheimer’s facilities; hospices.

Article: The Dementia Care Garden: part of daily life and activity by Garuth Chalfont, Journal of Dementia Care, Vol. 15, No.6, November/December 2007, p.24-28

In this first of two articles, Garuth Chalfont discusses the benefits to people with dementia of everyday contact with gardens and the natural world, and gives guidance on how care homes can make engaging with nature a normal, regular aspect of daily life.

Note: should you be interested in this article please request it through our handy form.

Article: The Dementia Care Garden: innovation in design and practice by Garuth Chalfont, Journal of Dementia Care, Vol. 16, No.1, January/February 2008, p.18-20

In the second of two articles, Garuth Chalfont gives practical advice on creating a Dementia Care Garden, and presents a case study showing how one care home improved and integrated three garden areas.

Note: should you be interested in this article please request it through our handy form.

Frontotemporal Dementia

Posted on August 14, 2014 by Dementia Australia Library

Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. It typically affects people at a younger age than Alzheimer’s disease, with symptoms beginning in the 50s or 60s, and sometimes younger. Almost a third of people with FTD have a family history of dementia.

The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.

Book: Frontotemporal dementia syndromes, John R Hodges. 2007.

In the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.

Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow & Gail Elliot. 2012.

Frontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.

This is a free, downloadable resource you can access here.

Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014

ADOD28(1)Jan-Mar14 Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.

Note: if you’re interested in this article please use this form to request it.

Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.

AnEvolutionOfLove Bob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50. He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

Website: AFTD Kids and Teens

When a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.

YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.

An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).

Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens, The Association for Frontotemporal Degeneration. c2012.

You are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.

FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.

As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.

This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.

This book is available as a free download here.

Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.

Pick's Disease and Complex_web Pick’s disease, a form of dementia often accompanied by aphasia has been know for over a century. The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose. This book presents the clinical and pathological manifestations of Pick’s disease. It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease. It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.

YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant. 2010.

Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

Note: this is an hour-long feature film.

Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014

dementia journal Atypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

Note: if you’re interested in this article please use this form to request it.

Help Sheet: Frontotemporal Dementia, Alzheimer’s Australia

This Help Sheet describes a type of dementia known as frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.

It’s a free download and might be a good resource for friends and family as it’s succinct.

Must-reads for carers and families of people with dementia

Posted on March 20, 2014 by Dementia Australia Library

This is a library ‘fantasy’ list. If you were to walk into our lovely little library – and we would LOVE you to do just that! – and commend yourself into our hands, this is what would we would send you home with. We know these books are of genuine use to those caring for people with dementia, please have a browse of the list and let us know if there are any you would like to borrow. Many are also likely to be offered through your local public library service as well.

First person accounts

First-person accounts from people with dementia are a really valuable insight into the experience of those living with dementia. Can they be heart-wrenching to read? Oh yes. Is it ridiculously brave to document your own experience of living with dementia whilst living with dementia? Unarguably so. Is it illuminating to understand, from a first-person perspective, the very personal and life-changing impacts? My goodness, gracious yes! Whenever I read first-person works I am the richer for it. It allows you to experience the world from another perspective, and as a result understand in a unique way what it might be like for someone with dementia and how I might be able to better help them.

Now, enough from me! Here’s a bit about the books.

Alzheimer’s from the inside out, Richard Taylor

Receiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others.

With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

Richard Taylor has Younger Onset Dementia.

Who will I be when I die? Christine Boden

For many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then.

Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

For Christine, Alzheimer’s disease with all the changes it brings, is part of her on-going journey.

Christine Boden has Younger Onset Dementia.

Carer accounts

For many of us, the care of family is taxing enough, without even considering the all-consuming demands of caring for a person with dementia. Particularly if that person also happens to be a much-loved parent or partner. Carers accounts offer us the opportunity to plunge into the astounding physical and emotional demands of looking out for a person with dementia. These are not always easy and/or comfortable reads but their raw honesty and often unflinching assessment of their successes and failures makes for very compelling and wonderfully human stories.

Here’s a few of our favourites:

Alzheimer’s: a love story, Vivienne Ulman

When Vivienne Ulman’s youngest child left home, she and her husband were poised to enjoy their freedom. Then her mother’s Alzheimer’s intervened. In Alzheimer’s: a love story, Vivienne records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustains them. Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he now amply returns this support. This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concerns for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Hazel’s Journey, Sue Pieters-Hawke

In November 2003, Hazel Hawke revealed that she was facing her greatest challenge – Alzheimer’s disease. Her courage and determination in the face of this cruel turn of fate touched millions. Now comes the full, inside story of Hazel’s journey with Alzheimer’s, told by her daughter Sue.

This is an intensely moving and personal story of an intelligent, independent woman struggling with the disease that is affecting an ever increasing number of Australians. From early denial to the awful anger that came after diagnosis and the acceptance that has developed since, Hazel’s Journey tell’s Hazel’s story – and shows what life is like for the hundreds of thousands of carers who are committed to helping their loved ones retain quality of life and to coping with the disease’s implacable progress. Inspiring, revealing and insightful, this is a journey you will never forget.

Losing Clive to younger onset dementia : One family’s story, Helen Beaumont

Clive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before.
Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia.
Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.

Guides to caring

Imagine if there was a way to have 24-7 access to a source of information and advice on caring for someone with dementia? These could be it, we know they have been very useful on a practical level for many of our library patrons.

The 36-hour day, Nancy Mace and Peter Rabins

The 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Understanding difficult behaviors, Anne Robinson

The detailed information on environmental, physical, and emotional influences is very beneficial to both family and professional caregivers striving to make improvements that may avoid difficult behaviors. Practical coping strategies for responding to challenging situations such as agitation, wandering, incontinence and resistance to care are also offered. These practical strategies for making changes based on possible causes and guidance to problem-solve helps to avoid the behavior and address it when it occurs.

Activities for people with dementia

Montessori based activities for persons with dementia: Volume 1 & 2, Cameron J. Camp (ed)

These books include intergenerational programming, group activities, ideas especially for men, and sensory stimulation exercises. Also, range-of-motion and self-care activities for enhancing restorative nursing and rehabilitation are described.

We can, we can, we can: purpose and pleasure for people living with dementia

Activity must meet our need for meaning and connection, as well as providing an outlet for creativity, spirituality, job, fun, and relaxation. Every one of us has leisure and recreation preferences. This collection of activities respects that diversity, as well as the need for a person-centred approach to activities.