October 11, 2017

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

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

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

 यह मनोभृंश है... कोई ...

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

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

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

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

The mindful caregiver : finding ease in the caregiving journey

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

The mindful caregiver : finding ease in the caregiving journey

Caregiving can be enormously challenging, terrifically rewarding, and potentially draining.

Caregivers often wonder how they will navigate the tumultuous waters of caregiving and not lose themselves completely. 

The Mindful Caregiver highlights two major approaches to help transform the journey: adopting a practice of mindfulness, which helps caregivers become more self-aware and fully present with the person with whom they are caring, and honoring “the spirit-side” of caregiving which offers new ways of connecting to one another. These approaches take into account not just the needs of the care recipient, but also the needs of the caregiver and other people in his/her life. 

Remembering to care for oneself when someone else is in great need can be difficult, but with the suggestions and tips in this book, any caregiver can cultivate routines and practices that benefit everyone. Solutions that caregivers can use in their day to day routines are provided, so caregivers who use them can feel more empowered and hopeful. 

...offers self-care exercises and addresses a wide variety of subjects such as setting realistic expectations, making the best possible decisions, advocating effectively, and evaluating available resources and services. 

Mindfulness for carers:
 how to manage the demands of caregiving while finding a place for yourself

This book shows how simple mindfulness techniques can help caregivers to manage the stress, anxiety, depression and burnout that too often accompanies the care of people with physical, psychological or emotional needs. The enjoyable mindfulness exercises will help caregivers to regain control and maintain a positive outlook.

Learn to relax : ease tension conquer stress free the self
      We all need to relax. If only it were as easy as it sounds! Now, with this beautifully illustrated and practical volume, anyone can learn to let go. Offering almost 30 ingenious and easy-to-do exercises tailor-made for busy people, plus original illustrations to aid visualization and a friendly text that's low on jargon, Learn to Relax presents effective ways to ease tension at work, at home, or on the road. Stress counselor Mike George suggests simple techniques for breathing, massage, anxiety control, time management, sleep enrichment, detachment, and meditation, all designed to calm the mind. Drawn from both Eastern and Western traditions, this book's easy yet highly effective strategies reveal how we can put problems in perspective, deepen self-awareness, and celebrate the positive in life. Practical and inspirational, Learn to Relax is an indispensable guide for anyone who wants to rediscover the essential art of relaxation.

      Ten thousand joys & ten thousand sorrows : a couple's journey through Alzheimer's
      "How did Buddhism and meditation help you and Hob to deal with his illness?"
      More than anything else, our Buddhist practice and understanding made a profound difference to both of us in handling his decline. 
      Through meditation one learns to find an inner refuge – a place of stillness – in the midst of all the changes and challenges. When we accept how much we can’t control, that everything is impermanent, we can begin to step out of our struggle with life. 
      Meditation helps one develop equanimity and acceptance of whatever comes up, and that is a great help in dealing with the losses and heartbreak of Alzheimer’s. To be realistic, meditation is not a panacea, but it is a tremendous support for which both of us were very grateful....advice offered by the author to someone who is caring for a partner with Alzheimer’s?
      • Accept that this is one of the most difficult challenges you’ll ever face.
      • When you realize that you’re their lifeline in a dissolving world, every supportive and loving gesture is a gift to them.
      • For me, when one of my spiritual teachers suggested that caregiving was an opportunity for me to practice the positive qualities of compassion, patience, generosity, and kindness, it helped give meaning to the humblest of tasks.
      • Have compassion for yourself when you feel frustrated, impatient, or angry, because caring for an Alzheimer’s patient is a Herculean task.
      • Ask friends and family for help! People want to help out, and there’s a real risk in becoming isolated.
      • Know what gives the patient comfort or reassurance. For us, it was always touch, physical closeness, music and beauty.
      There are many more answers to this question in the Reflections, Suggestions, and Seed Thoughts at the end of each chapter.

      October 06, 2017

      Living well with dementia : 3 books by by Shibley Rahman

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

      Enhancing health and wellbeing in dementia 
      : a person-centred integrated care approach

      by Shibley Rahman
      Focusing on how to support the wellbeing of people with dementia in care homes and home care, this book highlights the foundations of high quality care. Based on the latest research and evidence, the book tackles head on the barriers to excellent dementia care, and engages with the latest initiatives that promote health and wellbeing.

      Living well with dementia : the importance of the person and the environment for wellbeing

      by Shibley Rahman
      Contents: Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion

      Living Better with Dementia: Good Practice and Innovation for the Future 
      (also available on eBook dementia-e-library.overdrive.com )
      by Shibley Rahman
      What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.

      book Review

      Readers will be hard pressed to find a more comprehensive book that covers all aspects of living with dementia.

      Each chapter provides an evidence-based perspective on the issues affecting those living with dementia and their carers, along with the policy context in the UK. Topics cover everything from stigma, citizenship, eating, incontinence, housing, GPS tracking and personal budgets.
      This book is invaluable for anyone studying dementia at undergraduate or postgraduate level because each chapter directs the reader to recent research, evidence and relevant policy documents. It highlights innovation and good practice from around the world and gives practical solutions for living well with dementia.
      The book would also be useful as a reference text for staff who work with people with dementia in different care environments; they can dip into the book and find a chapter that is relevant to their area of interest.
      Overall, this text challenges perceptions and the biomedical model of dementia, while also encouraging the reader to consider the rights and perspectives of people living with the condition and how policy could meet their needs better.

      New books for healthcare professionals - meaningful activities

      email nsw.library@alzheimers.org.au to borrow resources 

      The connections activity program for people with dementia

      Enjoy the benefits and reduced stress that come from reconnecting people with dementia to lifelong activities they love. Using a strength-based approach, this guide shows step by step how to design meaningful, individualized activities that can be performed by a person with memory loss as independently as possible. Helpful assessment and implementation tools guide your efforts to identify a personaEURO (TM)s optimal leisure activities and then tailor them to current skill levels. The resulting activity plans will effectively promote the well-being and self-identity of each person with memory loss. Downloadable resources include: Communication strategies and conversations starters. Assessment forms Step-by-step implementation guides Sample activities adapted for early, middle, and late stages of dementia.

      Visiting the Memory Cafe and Other Dementia Care Activities Evidence-based Interventions for Care Homes

      Activity and engagement are vital to our well-being throughout our lives and this continues to be just as true of people living with dementia.The activities presented in this book have been designed to provide meaningful engagement for residents, while respecting each individual resident's readiness to engage and participate. This approach to person-centred care has proven to be extremely effective: activities such as Namaste Care and Memory Cafes have engaged residents who had previously not responded to interventions, demonstrably showing an increase in their levels of well-being.Supported by case studies, each chapter will also recommend the best way to implement the ideas discussed in the care home environment and beyond.

      Singing Groups for People with Dementia : A Guide to Setting Up and Running Groups in Community and Residential Settings
      everything you need to know about setting up and running these includes;
      Chapter One: What is so good about music?   3
      Chapter Two: What is so good about music for people with dementia?  7
      Chapter Three: What do you need to know about dementia?  11
      Chapter Four: Preparing yourself   21
      Chapter Five: Preparing others  22
      Chapter Six: Roles of people involved   29
      Chapter Seven: Identifying a suitable venue   33
      Chapter Eight: Fundraising   36
      and much much more ...

      Positive communication : activities to reduce isolation and improve the wellbeing of older adults

      A collection of over 100 structured activities for use with groups of older people that are designed to improve overall physical health and emotional wellbeing. Each activity comes with specific instructions for delivery along with helpful handouts and additional resources.

      The effects of social interaction and engagement with older people have been proven to considerably improve quality of life and emotional wellbeing. This book comes packed with ready-to-use activities for groups of older people, aimed at connecting individuals, developing their self-esteem, and encouraging personal expression and independence.

      The activities are intended to be led by facilitators working with groups of older people in residential homes, drop-in or day centres, hospices, clubs for older people, hospitals, or support groups. The activities range from creative arts to storytelling to sports, and are all designed to keep both bodies and minds sharp, while encouraging positive relationships with others.

      Reading in the moment - activities and stories to share with adults with dementia

      Studies have shown that reading in a melodic and rhythmic voice can produce positive changes in mood, emotion and behaviour in those with dementia. This technique - known as bibliotherapy - is used in this book and has been tailored to help those who grew up during the 1930s through to the 1960s, as well providing for people of all cultures. While traditional literature, such as Dickens and Shakespeare, might be beyond the literacy skills of many readers, and while poetry may not interest all, this book presents short stories, prose prompts and biographies which are written in a rhythmic and lyrical way to make communicating easier and more enjoyable. A focus on using short sentences, repeated language features and striking imagery which appeals to all the senses captures moments in time or action - short stories which are printed in large, clear font to suit readers who have limited vision or who may struggle to maintain attention; and language to suit a lower reading level, but appropriate and respectful of adult readers. The book is designed to be used by people who have some experience in working with clients who have dementia, but who do not have specific training in bibliotherapy. They may be running a group session, working in a library or caring for a family member at home. There is a need for 'reading in the moment' - sharing a story, a piece of prose, a biography - for the simple pleasure of sharing a moment in time together.

      The hen that laid the golden omelette : a guide to art classes for people with dementia: the experiences and learning of two volunteers over ten years

      Even when the memory and senses fail, people with dementia may experience the joy of creativity through watercolour painting. This is the liberating message of Barbara Davison and Barbara Potter's inspiring Sefton Art Project. In The Hen that Laid the Golden Omelette, the outline the philosophy and techniques that evolved during their ten years of assisting people with dementia to express themselves in watercolour. Illustrated with the exuberant and often moving images of the artists themselves, this book challenges the assumption that people with dementia can no longer live productive lives and offers practical advice to those who may follow in their path.

      Dementia – The international journal of social research and practice

      Volume 16, Issue 6, August 2017

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

      Dementia and the privilege of growing old
      “….. rightly argue that ‘dementia discourse must acknowledge the limitations associated with this condition, while discovering the remaining pleasures’ . Accepting dementia – warts, wandering and all – rather than trying to ‘beat’ or ‘overcome’ it, involves challenging the persistent myths of dementia without oversimplifying the lived experience. The same must be done for aging and dying. While a ‘living well’ lens helps counteract the inaccurate past portrayals that perhaps make sense for clinical research, biomedical institutions or even advocacy agencies, it is harmful for the most deeply forgetful among us – and all of us as we envision ourselves as future old people. Such skewed and reductionist representations must be balanced with more accounts that reveal the full spectrum of experiences at each phase of the illness over time, including the late-stage and death, as well as the active citizenship of people with dementia. We must also challenge institutional ageism by interrogating the misrepresentations in medical arenas and the mass media alike to foster the ‘role of society and culture in repositioning dementia away from deficit to a discourse of agency and interdependence’ (Birt, Poland, Csipke, & Charlesworth, 2017, p. 199; emphasis added). If we want to bring some humanity to forgetfulness and aging, then we must (continue to) insist that dementia does not destroy either sociality or personhood. Meaningful social change must start with the readership of this journal. If not us, then who?’’
      pp. 685–688

      Music therapy: A nonpharmacological approach to the care of agitation and depressive symptoms for nursing home residents with dementia
       Kendra D Ray ;   Mary S Mittelman;

      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.
      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.
      pp. 689–710

      Digital communication support and Alzheimer’s disease
       Anna Ekström; ,  Ulrika Ferm;  Christina Samuelsson;

      Communication is one of the areas where people with dementia and their caregivers experience most challenges. The purpose of this study is to contribute to the understanding of possibilities and pitfalls of using personalized communication applications installed on tablet computers to support communication for people with dementia and their conversational partners. The study is based on video recordings of a woman, 52 years old, with Alzheimer’s disease interacting with her husband in their home. The couple was recorded interacting with and without a tablet computer including a personalized communication application.
      The results from the present study reveal both significant possibilities and potential difficulties in introducing a digital communication device to people with dementia and their conversational partners. For the woman in the present study, the amount of interactive actions and the number of communicative actions seem to increase with the use of the communication application. The results also indicate that problems associated with dementia are foregrounded in interaction where the tablet computer is used.
      pp. 711–731

      From wandering to wayfaring: Reconsidering movement in people with dementia in long-term care
       Megan E Graham;

      The movement of people with dementia in long-term care continues to be an issue of concern among clinicians, caregivers and families. This article will examine the social construction “wandering” and its association with pathology, risk discourse and surveillance technologies. Further, the article will explore the recent shift from the term “wanderer” to the phrase “people who like to walk” in person-centred dementia care. Engaging with Ingold’s concept of movement as wayfaring, an alternative becoming-centred understanding of movement and its significance for people with dementia will be presented and illustrated through a case study.
      The paper concludes that depathologizing movement opens the possibility to see movement in people with dementia as an intention to be alive and to grow, rather than as a product of disease and deterioration. Suggestions for future research and implications for care interventions are discussed.
      pp. 732–749

      Social housing provision for minority ethnic older people with dementia: Findings from a qualitative study
       Valerie Lipman; ,  Gillian Manthorpe

      Little research has explored how not-for-profit housing providers, often termed Housing Associations in the United Kingdom, meet the needs of older tenants with dementia who are from black and ethnic minority communities. This article presents findings from an exploratory study conducted in 2015. The study took an audit approach, investigating current practice and policy in 12 Housing Associations. All were developing their understanding of dementia; some were augmenting their standard rented property portfolio to include housing with care provision; and most had policies relating to equalities and diversity and were offering dementia training to members of staff. None appeared to have fully integrated the three strands of housing services, dementia care, and cultural or ethnicity-related needs and preferences. A range of strategies was reported as being developed to meet tenants’ changing circumstances. Anxiety about the cost of adaptations was commonly reported, although the nature and extent of this were ill-defined. Discussion focuses on the findings’ implications for housing providers and for dementia professionals.
      First Published November 8, 2015; pp. 750–765

      Structural equation model linking dementia cognitive functioning, caregiver mental health, burden, and quality of informal care in Argentina
       Alejandra Morlett Paredes;   Paul B Perrin; Silvina V Peralta;  Miriam E Stolfi; Eliana Morelli;  Juan Carlos Arango-Lasprilla

      The purpose of this study was to create a path model linking cognitive functioning in individuals with dementia, caregiver burden and mental health, and quality of care provided for the individual with dementia in Argentina. One hundred and two dementia caregivers from San Lucas, Argentina completed questionnaires assessing these constructs. Regressions found that caregiver burden, depression, anxiety, and satisfaction with life explained 18.8% of the variance in quality of care—respect and 14.7% of the variance in quality of care—provide. A structural equation model with generally adequate fit indices uncovered that cognitive functioning in individuals with dementia was inversely associated with caregiver burden, caregiver burden was inversely associated with mental health, and mental health was positively associated with quality of care. Further, patient cognitive functioning yielded a significant indirect effect on caregiver mental health through caregiver burden, as did burden on quality of care through mental health. Despite this negative cascade, these relationships may also be reversed with the development and use of dementia caregiver interventions that improve caregiver burden and mental health and as a result, the quality of care for individuals with dementia in Latin America.
      pp. 766–779

      Translating knowledge into practice: An exploratory study of dementia-specific training for community-based service providers
       Grace O’Sullivan; Clare Hocking; Kathryn McPherson

      To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers.
      This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training.
      Staff valued up-to-date knowledge and “real stories” grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice.
      The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.
      pp. 780–796

      Predicting perceived medication-related hassles in dementia family caregivers
      Nika R George; Ann M Steffen;

      This study examined predictors of medication administration hassles reported by intergenerational dementia family caregivers.
      A sample of 53 women who aided a cognitively impaired older adult with healthcare and who identified as inter-generational caregivers provided self-report medication management and psychosocial data.
      Future interventions may reduce medication-related hassles by providing psychoeducation about healthcare, medication management, and strategies for coping with care-related stressors and depressed mood.
       2015; pp. 797–810
      Keady, M. J. (2017). [Review of the book Dementia: living in the memories of god, by John Swinton]. Dementia,
      pp. 811–811

      Withdrawn: An assessment of the dementia CQUIN – An audit of improving compliance
      Mills, J., Minhas, J., & Robotham, S. (2013). An assessment of the dementia CQUIN – An audit of improving compliance. DOI: 10.1177/1471301213515575
      The Department of Health has increased the emphasis on earlier detection of dementia among patients aged over 75 admitted to hospital in an emergency in England. Introduction of a Commissioning for Quality and Innovation (CQUIN) payment provides an incentive for NHS Trusts to screen patients for memory problems on admission. This article reports on how improvements were made to the screening process across three wards in a large university teaching hospital.

      October 04, 2017

      be the change

      I encourage you and your teams to attend to be part of a unique opportunity that will bring together our dementia community and inspire us all to Be the Change, in this time of unprecedented change, to transform the way we think about dementia.

      We are aiming to inspire delegates to explore more innovative and creative ways to improve the quality of life and support of people, of all ages, living with all forms of dementia, their families and carers.

      An extraordinary list of international and national key notes speakers will present including Naomi Feil, USA, world-renowned since the 1960s, for her Validation method in dementia care; Prof Sam Gandy, USA, an international expert in the metabolism amyloid that clogs the brain in people living with Alzheimer's disease; Prof Dawn Brooker, UK, who has dedicated her career to developing evidence based practical ways to enable those living with dementia to have the best possible quality of life. More speakers are listed on our conference website,www.dementia2017.org
      Inspirational dementia advocates Christen Bryden, and Kate Swaffer, CEO Dementia Alliance International, will be presenting their living experience with dementia.
      Interactive workshops will provide delegates with unique opportunities to hear from international thought leaders and interact with other delegates.
      The event will offer delegates the opportunity to experience Alzheimer’s Australia’s award-winning, groundbreaking technology using virtual reality, video games, 3D design, apps and multiple websites.
      You will be able to experience a world-first, walk-through, art installation, researching how sound impacts on our cognitive function, which is aiming to prompt our thinking around how the environment we create can be more supportive.
      Don’t miss out on your dementia experience in Melbourne.
      We look forward to seeing you there.

      Kind regards,

      Maree McCabe
      Chief Executive Officer | Alzheimer's Australia

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