Music and dementia

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.

ConnectingThruMusicBook: 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.

dementia journalArticle: 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, 2014Alive Inside DVD

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 nat article 2Radio 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.

 

dementia journalArticle: 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.

Sustaining_note_of_hopeReport: 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.

JGN_feb2014Article: 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.

music therapy and neurological rehabilitationBook: 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.

jdc_marchapril2015Article: ‘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.

AJDCfebmar14Article: 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.

aust_ageing_agenda_mar2014_webArticle: 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

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.


you say goodbye_webBook: 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.


EvalMontPrincReport: 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.


dementia journalArticle: 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_screen_montessoriBlog: 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.

Dementia-friendly communities – Communicating and socialising with a person with dementia

September is Dementia Awareness Month and this year we are focusing on how to create a dementia-friendly nation that empowers, respects and engages people with dementia in everyday life.  An important part of this is maintaining social connections and friendships.  People with dementia and carers alike frequently identify social isolation as one of the most profound impacts of disclosing their condition to others.

Many people are unsure how to communicate and socialise with a person with dementia and as a result, they may withdraw from a friendship or relationship with a person with dementia, particularly as the dementia progresses and the person with dementia finds it harder to express themselves. We humans are highly social creatures. Isolation from key friendships and family relationships greatly increases the stress and distress of people with dementia and those who care for them.

Our post today focuses on providing resources that help friends and family of people with dementia communicate and socialise together, for the enjoyment and benefit of all.

dementia - the one stop guideBook: Dementia – the one-stop guide : practical advice for families, professionals, and people living with dementia and Alzheimer’s Disease by June Andrews, 2015

Chapter 5 – What are friends for? has some great suggestions on how people with dementia and carers may be feeling about their personal circumstances and the reactions of friends, as well as practical suggestions for what friends can do to stay connected and offer genuine support.  June Andrews has some great words to offer in the opening paragraph:

“Dementia presents a particular problem to friends if you are not part of the family. You might not know much about it yourself and the whole idea of it is terrifying. You want to help, but you are afraid of being embarassing or inappropriate and you just don’t know what would make a difference. Reading this chapter will provide guidance on what often does make a difference, based on what people with dementia and their family carers say.” (p.75)

tips_friendsHelpsheet: Tips for Friends, Alzheimer’s Australia

This Sheet gives you a few tips on how you can support a friend with dementia and their family. You can make a difference.

“Although our lives are changed forever, there is life after diagnosis. We need our family and friends to walk alongside us as we build a new life” Nancy, carer

Effective communication DVDDVD: Effective Communication with people with dementia, Alzheimer’s Australia Vic

Understanding how dementia affects communication and finding ways to cater for the changes in people’s abilities can help to make communicating with people with dementia more effective and enjoyable.

Communication is one of the important ways that we achieve tasks, express our needs and stay connected with each other. People who have dementia usually experience a decline in their ability to communicate. This can be frustrating and difficult for everyone involved.

In this program, people with dementia and their families and carers show some common communication difficulties. They also demonstrate various techniques or strategies that can help. By adapting these strategies to individual circumstances, effective communication can be maintained throughout all stages of dementia.

Im_Still_hereBook: I’m still here : a breakthrough approach to understanding someone living with Alzheimer’s by John Zeisel, 2010

Chapter 7 – Building a new relationship and Chapter 8 – Appreciating the new relationship include valuable information on communicating with and building a relationship in the changed circumstances people with dementia may be experiencing. These chapters offer valuable insights into what it can be like to have dementia as well as strategies for providing sensitive and practical support to friends and family members with dementia.

tips_communicationHelpsheet: Communication

This Help Sheet explains some of the changes in communication that occur as a result of dementia and suggests ways that families and carers can help. It also includes some personal tips on communication written by a person with dementia.

talking_toolkit_bupaResource: The Talking Toolkit, Bupa Aged Care

It can be hard to communicate with a loved one who is living with dementia.

The Talking Toolkit contains advice from Bupa dementia care experts. There are also tips from carers in our care homes about how best to engage and connect with loved ones living with dementia.

This free resource can be downloaded here.

comforting touch_webBook: Comforting touch in dementia and end of life care : take my hand by Barbara Goldschmidt and Niamh van Meines, 2012

The simple sensation of touching someone’s hand can have a powerful therapeutic effect. Hand massage is a positive and meaningful way of reaching out and providing comfort to those who are elderly, ill or nearing the end of life, and it can be particularly effective for people with dementia who respond well to non-verbal interaction. This book offers inspiration for all caregivers looking for an alternative way to support and connect with a family member, friend or patient in their care. It teaches an easy 30 minute hand massage sequence and offers clear instructions and detailed illustrations to guide the reader through each step. Combining light massage strokes with focused awareness, and paying close attention to points on energy pathways, this book introduces a structured way of sharing touch that is grounded in Western and Eastern massage traditions.

Friends_matterResource: Friends Matter: How to stay connected to a friend living with dementia, Alzheimer’s Australia Vic, 2012

Friendships matter. Friends help us navigate life’s ups and downs. Friends accept us as we are.

What can we do to maintain this special bond when a friend is living with dementia? How do we stay connected in ways that are meaningful, and what interests can we continue to enjoy together?

These are some of the important questions this booklet aims to address. We hope the information and suggestions in this guide help you stay connected, as you discover different and meaningful ways to be with a friend living with dementia.

This free resource can be downloaded here.

 dementia journalArticle: The dance of communication: Retaining family membership despite severe non-speech dementia by Bruce D. Walmsley and Lynne McCormack, Dementia, Volume 13, Number 5, September 2014, p.626-641

There is minimal research investigating non-speech communication as a result of living with severe dementia. This phenomenological study explores retained awareness expressed through non-speech patterns of communication in a family member living with severe dementia. Further, it describes reciprocal efforts used by all family members to engage in alternative patterns of communication. Family interactions were filmed to observe speech and non-speech relational communication. Participants were four family groups each with a family member living with non-speech communication as a result of severe dementia. Overall there were 16 participants. Data were analysed using thematic analysis. One superordinate theme, Dance of Communication, describes the interactive patterns that were observed during family communication. Two subordinate themes emerged: (a) in-step; characterised by communication that indicated harmony, spontaneity and reciprocity, and; (b) out-of-step; characterised by communication that indicated disharmony, syncopation, and vulnerability. This study highlights that retained awareness can exist at levels previously unrecognised in those living with limited or absent speech as a result of severe dementia. A recommendation for the development of a communication program for caregivers of individuals living with dementia is presented.

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

Resource: RELATE, MOTIVATE, APPRECIATE: An Introduction to Montessori Activities, Alzheimer’s Australia

This introduction to Montessori activities focuses on the elements of a meaningful interaction with someone living with dementia. The booklet outlines why the Montessori approach works, describes the “RELATE, MOTIVATE, APPRECIATE” model and the principles of engagement under this approach. A DVD is included to provide some visuals to further guide the approach.

Resource: RELATE, MOTIVATE, APPRECIATE: A Montessori Resource, Alzheimer’s Australia

RelateMotivateAppreciate-resource_webPeople with dementia are often confronted with what they can no longer do or with the mistakes that they make. Montessori principles are designed to focus on what they can still do. One of the main Montessori principles emphasises using less language, while at the same time promoting non-verbal communication by demonstrating everything that you would like the person to engage with. This book includes 28 activities. The activities are grouped under 5 themes: watching, listening, touching, smelling and tasting. These activities are a starting point that will hopefully serve as inspiration for you to think of activities that the person will enjoy.

doyouremembersmallBook: Do you remember? Written by Kelly O’Gara & Anna McNeil. Illustrated by Kelly O’Gara, 2014

This evocative picture book tells a lovely story of the relationship between two mice – one older, one younger – and also includes helpful, age-appropriate suggestions for how 4 – 8 year old children can interact with, and enjoy the company of people with dementia.

smellofchocolateBook: The smell of chocolate: and Pog’s Alzheimer fact file written and illustrated by Barbara McGuire, 2003

This book for children aged 8 – 12 includes a story about a boy and his grandfather, who has Alzheimer’s disease as well as a ‘Fact File’ at the end of the book which includes information on Alzheimer’s disease and a range of strategies children can use to interact with people with dementia, including some tips on communication.

 

Richard Taylor – Collected works

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

alzheimers_from_the_inside_out_webBook: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

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

live outside the stigma DVD_webDVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.”  These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

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

be_with_me_today_webDVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 2009

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

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

100answers20questions6pers_webDVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions.  The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

living w dementia R Taylor DVD_webDVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to

 

  • Redefine the disease to better understand those experiencing it
  • Stop making people with dementia look and act like we do
  • Recast “problem behaviors” as mechanisms for coping and communicating
  • Find new ways to make normal life experiences accessible to people with dementia
  • Create more opportunities for people to feel connected and find meaning day to day
  • Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

  • How to communicate a person’s preferences to care staff
  • Whether asking for opinions and responses from people with dementia is confusing for them
  • Ways to have better long-distance interchanges with a loved one by phone
  • Whether better care practices can be taught or are essentially innate
  • And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of      “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle

Intimacy, sexuality and dementia

Discussing intimacy and sexuality can be confronting.  Yet intimacy and the desire for close physical contact continue to be important, even in changing circumstances such as those experienced by people with dementia and their partners – who may also be their carers.

Today’s post considers the topic of intimacy, sexuality and dementia.

ACI_JunJul2015Article: Love never dies, Maree McCabe interviewed by Dallas Bastian, Aged Care Insite, June-July 2015

Sex and intimacy often remain a part of the lives of people living with dementia and their partners. This interview discusses the taboos, assumptions and stereotypes around older people and sexual intimacy which will be challenged at an upcoming conference about Sex, Relationships and Intimacy.

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

Conference: Let’s Talk About Sex Conference 2015: Relationships and Intimacy As We Ageltas2015websitelogo

The inaugural Let’s Talk About Sex Conference aims to challenge many of the assumptions, taboos and stereotypes when it comes to older people and sexual intimacy. The failure to acknowledge sexuality and ageing has left many older people deprived of their right to a satisfying and fulfilling sex life. In aged care planning, no provision is generally given for clients to be intimate with their partners and it is often regarded as inappropriate and unacceptable.

On behalf of Alzheimer’s Australia Vic and our co-hosts COTA Victoria, we wish to invite you to join us for the Let’s Talk About Sex Conference taking place on the 8-9 September 2015 at the Pullman on the Park, Melbourne, Australia.

 

On the off-chance you can’t make it to the conference, or even if you can, here’s some other resources you may want to consider which offer different perspectives on intimacy and sexuality as people age and specifically for people with dementia and their partners.

sexuality longterm care0001Book: Sexuality & long-term care : understanding and supporting the needs of older adults by Gayle Appel Doll, 2012

Responding to the sexual desires of older adults in residential environments is widely recognized as a challenge by care staff, administrators, and family members. This new resource meets the challenge head on, exploring the issues surrounding sexual expression from all perspectives. It addresses the question of how, in an increasingly person-centered care culture, long-term care facilities balance individual resident rights against the needs and concerns of the community as a whole.

Informative, engaging, and instructive, this helpful resource recognizes sexual expression as a significant part of personality, explains why it is important to honor longings for intimacy, and provides strategies for teaching staff how to effectively, respectfully, and compassionately acknowledge those needs. Case studies illustrate potential issues surrounding resident sexuality and provide ample opportunities for healthy discussion about how staff handled the situation, what was done well and what was not, and how to improve the outcomes.

Long-term care administrators, nurses, social workers, counselors, direct care staff, ombudsmen, and others devoted to enhancing the quality of life in nursing homes will learn how to address and prevent inappropriate behaviours, what normal sexual expression is in old age and how dementia affects it, how to accommodate the needs of LGBT residents, ways to protect residents from sexually transmitted diseases, and much more.

Valuable tools for staff training are included that encourage staff and managers to explore attitudes and biases about the sexuality of older adults and help organizations develop policies related to this fundamental need.

Fully grounded in research, Sexuality and Long-Term Care will enlighten anyone who believes sexuality vanishes with age and offers many useful solutions for navigating this controversial issue.

JDC_mayjune14Article: JDC asks…What issues do care home staff face when supporting a person living with dementia who is in an intimate relationship? The Journal of Dementia Care 22(3), 2014, p.8-9

Recently in a care home, I suggested buying more sofas than chairs for lounges, to encourage more closeness and companionship between people. The first reaction of the manager was that this might be a problem as it was “likely to lead to more safeguarding concerns”…

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

sex intimacy and aged careBook: Sex, Intimacy and Aged Care by Barbara Sherman, 1998

Sexuality in older people has often been a vexed issue, provoking strong emotional associations, embarrassment and silence. Behaviour considered ‘inappropriate’ in those who belong to this age group, however, can be more easily understood if their experiences and needs are considered. In clear, accessible language, Barbara Sherman explores the issues relevant to sexuality and old age, and challenges us to examine our own attitudes. Stories of the experiences of caregivers, families and people affected by dementia illustrate the difficulties encountered by sexual partners, as well as the complexity of the situations confronting professional careworkers. Sex, Intimacy and Aged Care offers a sympathetic perspective as well as constructive ideas for dealing with older people’s feelings, desires and behaviour, and explodes the myths surrounding a normal part of life.

Film: The heart has no wrinkles by Health Media, 1988

The heart has no wrinkles is a fictional account of a relationship formed by two people in an aged care setting and the reaction of staff to this relationship. The film examines the reactions of staff, the couple and includes a meeting between the male character and his doctor where intimacy and physical matters are discussed. Among the staff members in the film, a range of attitudes are shown and the importance of considering the intimate needs and needs for companionship that aged care facility residents still have is emphasised.

JGN_nov2013Article: Influence of Cognitive Decline on Sexuality in Individuals with Dementia and Their Caregivers by Karen M. Robinson and Samantha J. Davis, Journal of Gerontological Nursing November 2013 – Volume 39 · Issue 11: 30-36

Sexuality is an important element of human life that is strongly influenced by the social environment. People assess themselves and relate their roles to one another in terms of sexuality. More attention must be directed at the sexual needs of individuals with dementia and their caregivers. A myth believed by society is that individuals with dementia are asexual and that sexual desires and needs for connection will wane over time; whereas in reality many couples living with dementia remain sexually active as the disease progresses. The sexual needs of individuals with dementia are similar to those of younger people but might vary in occurrence and expression. An increase or decline in sexual desire is dependent on the level of cognitive impairment. Sexuality in individuals with dementia may be expressed as inappropriate or hypersexual behavior due to disinhibition and forgetting social cues. Although hypersexuality is often less common than other challenging behaviors that can occur in dementia, it affects both the health of the individual with dementia and the health of his or her caregiver.

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

AD and marriageBook: Alzheimer’s Disease and Marriage by Lore K. Wright, 1993

What impact does Alzheimer’s disease have on the martial relationship? What can a helping professional do to help the caregiving spouse? Carefully and thoughtfully documented, Alzheimer’s Disease and Marriage peers deeply into caregiving research and personal data on individual relationships to uncover the profound effects of Alzheimer’s disease on marriage. To date, existing research only dimly illuminates patterns of impact, response, and influence of this affliction on marriage; Alzheimer’s Disease and Marriage now fills the void. Distinguished author, Lore K. Wright, presents her findings from the perspective of both the caregiver and the Alzheimer’s disease afflicted spouse resulting in a highly practical tool professionals can use for optimal intervention and assessment. She shows how Alzheimer’s disease invades various dimensions of marriage and how spouses retain or lose awareness of each other. Among the marital dimensions explored are day-to-day aspects of a relationship such as household tasks, tension, companionship, affection and sexuality, and commitment. For each of these dimensions, clinical assessment strategies and guidelines for interventions are described. Details on how to approach and interact with an afflicted spouse are also provided.

more than a thousand tomorrowsFilm: More than a thousand tomorrows : Intimacy sexuality and Alzheimer’s by James Vanden Bosch, 2003

One of the rarely discussed effects of Alzheimer’s disease is its impact on intimacy and sexuality. In the award winning video, A Thousand Tomorrows, several spouses of people with Alzheimer’s spoke candidly about the blurring of their roles, about changes in behavior that affect intimacy, and about the whole range of complicated emotions surrounding their wife’s or husband’s illness. The film set a tone of candor and respect that was extremely helpful in confronting the difficulties which both family members and professionals can have in discussing these issues.

Of particular interest in this program were the interviews with Everett and Betty Jordan. Betty, who was in the fairly early stages of the disease, was able to share in the discussion of how it was affecting her as well as her husband. This new video revisits Everett and Betty at one and six years later, to follow the changes in their lives as Betty’s Alzheimer’s gradually worsened, and she eventually needed to be placed in a nursing home. Central to the video is Everett’s candid discussion of his feelings and decisions regarding the changes in his ongoing intimate relationship with Betty during those years, and how he has coped.

Abstract from Fanlight Productions, http://www.fanlight.com/catalog/films/407_mttt.php accessed 10 July 2015.

QDC Understanding dementia care and sexualityPublication: Quality dementia care standards : understanding dementia care and sexuality in residential facilities, 2010

This publication asks the questions that all those caring for with people with dementia need to reflect on in developing strategies that result in individualised responses to the different needs of individuals. The booklet discusses what sexuality is, the behaviours that may be present that can be perceived as sexual in nature, the human rights and responsibilities of people with dementia, duty of care issues, understanding family relationships, approaches to risk management and developing policies on sexual behaviour. Each section has issues for consideration and there are some case studies which draw out particular issues. For the purposes of this paper carers refers to family carers; employed carers are those who work for organisations involved in aged care or disability services.

dementia journalArticle: Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women by Sue Westwood,

There is a growing appreciation of the significance of socio-cultural context for the experiences of an individual living with dementia. There is, too, an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men. However, little attention has been given as yet to the experiences of lesbian and bisexual women living with dementia. This article addresses this gap in knowledge, exploring the significance of the intersection of ageing, gender and sexuality for lesbian and bisexual women with dementia. It suggests that stigma and social marginalisation associated with dementia and with ageing, gender and sexuality intersect to compound the social exclusion of lesbians and bisexual women. This has implications for early diagnosis and treatment. Moreover, community care policy, which is predicated on heterosexist norms fails to take into account older lesbians and bisexual women’s support networks and so is less likely to be attuned to their needs. Residential care provision is perceived by older lesbians and bisexual women as being heteronormative at best and homophobic at worst. Services which do not recognise, validate and support their identities will compound their anxiety, confusion and distress. This may be contrary to Equality and Human Rights legislation and UK social policies. This paper draws upon, and analyses, extracts from a range of authorship, synthesising the material to present novel insights into the significance of gender and sexuality for the experience of dementia and dementia care.

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

dem and sexuality roseBook: Dementia and sexuality : the rose that never wilts by Elaine White ; foreword by Professor Mary Marshall, 2011

This book offers understanding and a positive attitude to care staff and relatives about the sometimes challenging sexual behaviour of people with dementia. It describes the possible causes and shows that, armed with this knowledge, a satisfactory outcome for all can often be achieved.
The author, Elaine White, has been consulted about sexual behaviour for many years, and is therefore able to include for the benefit of readers many true stories from her work.
Dementia and sexuality makes the powerful point that how each of us perceives and responds to challenging sexual behaviour is very important. It asks readers to think deeply about their own attitudes as well as the behaviour of people with dementia.

gen silent DVDFilm: Gen silent : a documentary film about LGBT aging  written and directed by Stu Maddux, [2011]

Gay, Lesbian, Bisexual and Transgender older people who fought the first battles for equality now face so much fear of discrimination, bullying and abuse in the care setting that many are hiding their lives to survive. Thousands are dying earlier than their straight counterparts because they are isolated and afraid to ask for help. But a growing number of people are fighting to keep their elders from being silenced.
Gen Silent was filmed in the Boston area over a one year period. During that time, director Stu Maddux followed six LGBT seniors through their decision to either stay open about their sexuality or hide it so that they can survive in the long-term health care system. In the documentary a gay man named Lawrence Johnson searches for a nursing home where he and his partner can be open about their relationship while still receiving quality care. It also follows a transgender senior by the name of KrysAnne. She searches for people to care for her because she is estranged from her family. The story of an LGBT couple named Sheri and Lois is told, including how they spent their lives fighting for LGBT rights. While Sheri states that she refuses to hide her sexuality, Lois states that she will if that is what it would take to protect her in the health care system. Mel and his partner are the final couple followed in the documentary. Mel’s partner gets sick and he finds care from a welcoming agency where he feels comfortable and safe to speak openly for the first time about his sexuality and their thirty-nine year relationship together.

dementia journalArticle: A kiss is still a kiss? The construction of sexuality in dementia care by Richard Ward, Antony Andreas Vass, Neeru Aggarwal, Cydonie Garfield and Beau Cybyk, Dementia February 2005 vol.4 no.1, p.49-72.

This article explores descriptions of the sexuality and sexual expression of people with dementia residing in care. It is argued that accounts offered by care workers are mediated by their own perspectives and interests. Data from the study, alongside a review of existing research findings, suggest that gender has a crucial influence upon the interpretation and response to sexual expression in care settings. Interviews with care staff revealed that such expression is often deemed problematic. Factors maintaining the invisibility of the homosexual population in care are also discussed. It is concluded that there exists a need for greater consultation with residents regarding sexuality and for an exploration of the range of sexualities in care.

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

Publication: Sexuality & dementia : a guide for all staff working with people with dementia  by Carole Archibald. Edited by Alan Chapman, 2005

This study guide sets out to challenge preconceived attitudes and to provide suggestions about how to respond and support people with dementia in those sexual situations that are confronting for practitioners.

ethics of sex and alzheimersBook: The ethics of sex and Alzheimer’s by John Portmann, 2014

A growing epidemic, Alzheimer’s punishes not only its victims but also those married to them. This book analyzes how Alzheimer’s is quietly transforming the way we think about love today. Without meaning to become rebels, many people who find themselves “married to Alzheimer’s” deflate the predominant notion of a conventional marriage. By falling in love again before their ill spouse dies, those married to Alzheimer’s come into conflict with central values of Western civilization – personal, sexual, familial, religious, and political. Those who wait sadly for a spouse’s death must sometimes wonder if the show of fidelity is necessary and whom it helps.

Most books on Alzheimer’s focus on those who have it, as opposed to those who care for someone with it. This book offers a powerful and searching meditation on the extent to which someone married to Alzheimer’s should be expected to suffer loneliness. The diagnosis of dementia should not amount to a prohibition of sexual activity for both spouses. Portmann encourages readers to risk honesty in assessing the moral dilemma, using high-profile cases such as Nancy Reagan and Justice Sandra Day O’Connor to illustrate the enormity of the problem. Ideal for classes considering the ethics of aging and sexuality.

sexuality-dementiaPublication: Sexualities and dementia : education resource for health professionals  developed by Dr Cindy Jones written in collaboration between Dr Cindy Jones and Professor Wendy Moyle, 2013

Sexualities and Dementia Education Resource – Caring for people with dementia who express their sexualities continues to be a major challenge for health professionals. This education resource, targeted at health professionals, will increase understanding of sexualities for people living with dementia

Sexualities and Dementia Facilitators Guide – This guide will assist facilitators to work through the Sexualities and Dementia Education Resource and provides workshop information for which a ‘train the trainer’ education style can be applied.

Sexualities and Dementia Facilitators Presentation  – These PowerPoint slides are to be used in conjunction with the Sexualities and Dementia Facilitators Guide.

To have and to hold web articleArticle: To Have and to Hold: Consent and Intimacy for People With Alzheimer’s by Jessica Pishko (2015)

There’s a strong cultural distaste for thinking about the elderly engaged in sexual activity, but we must if we’re going to protect an aging population.

Gardens for people with dementia

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!

creating culturally approp spacesBook: 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.

JGN_Sept2014Article: 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.

design outdoor spaces pwdBook: 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.

dementia journalArticle: 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.

dementia journalArticle: 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.

dementia journalArticle: 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.

designing balconies roof gardensBook: 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.

AJDC_JunJul2015Article: ‘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.

HealingGardensBook: 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.

JDC_NovDec2007Article: 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.

JDC_JanFeb2008

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.

Ministering to people with dementia

This post describes our resources on ministering to people with dementia. Should you be interested in any of these resources, you can request them using this handy form.

JDCJulyAug2004Article: Spirituality, religion and faith in dementia care by Malcolm Goldsmith, Journal of Dementia Care 12(4), 2004

Despite the many definitions of ‘spirituality’, there is an increasingly united sense of its importance in dementia care. Malcolm Goldsmith reflects on what religious and spiritual ideas have to offer, and on relations between churches and people with dementia.

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

spirituality and ageingBook: Spirituality and Ageing edited by Albert Jewell, 1999

This book presents the experience of ageing as an opportunity for spiritual reflection and affirmation of life. The contributors are religious and spiritual leaders and ethical thinkers from a range of different backgrounds. They define ‘spirituality’ not just as a religious concept but as the fulfillment of the universal human need for purpose, values and relationships – a sense of wholeness in life. This spiritual dimension helps people face the emotional and psychological challenges of growing older, such as memory loss, dementia, bereavement and fear of death. Existing systems of social care often focus on the material and physical needs of older people; this collection proposes that the spiritual needs for older people are as vital a consideration for their welfare. Through their spirituality, older people can attain a fuller appreciation and understanding of life, which can also inform and enrich the lives of others. Spirituality and Ageing will be an invaluable resource for carers looking for a holistic and more reflective approach to work with other people.

guideministeringalzheimerspatienBook: Guide to Ministering to Alzheimer’s Patients and Their Families, Pat Otwell, 2007

Guide to Ministering to Alzheimer’s Patients and Their Families examines the importance of spirituality in dealing with the everyday challenges of this mysterious disease. Not a “how-to” manual with step-by-step instructions or tried and true formulas, this unique book instead examines the essential elements of ministering to dementia patients based on first-hand accounts of family members living through pain and uncertainty. The book explores the nature and stages of Alzheimer’s: the desire to minister; theological understanding; grief and guilt; communicating with Alzheimer’s patients; spiritual needs and implications for spiritual care; ethical issues and the role of ministry in decision-making; models for ministry; faith, hope, and love; blessings; and resources. This book is designed for all who desire to minister to those affected by Alzheimer’s – especially pastors, priests, chaplains, pastoral counselors, church leaders, healthcare professionals, and seminary students.

JDCMayJune2003Article: Holding a religious service for people with dementia by Patricia Higgins, Journal of Dementia Care 11(3), May/June 2003

Patricia Higgins looks at how holding a religious ceremony can enrich life and well-being for people with dementia.

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

ministeringpeoplewdementiaGuide: Ministering to people with dementia: a pastoral guide, Catholic Health Australia, 2008

inistering to People with Dementia: A Pastoral Guide , produced by Catholic Health Australia in cooperation with Alzheimer’s Australia is a practical handbook for the spiritual care of people with dementia. The Guide has been written expressly for those working in parish settings to assist in the provision of spiritual care of parishioners with dementia both at home and in residential care within the local community.

inastrangelandBook: In a strange land… : people with dementia and the local church : a guide and encouragement for ministry, Malcolm Goldsmith, 2004

About one person in twenty over the age of sixty-five and about one in five over the age of eighty have dementia. These people will have spouses, partners, children, relatives and friends. It is likely therefore that just about every church congregation and community will have a number of people affected, directly or indirectly, by dementia.

    • How do clergy and lay leaders, members of the congregation and others understand, relate to and support these people?
    • What happens to the faith of people with dementia? How do their carers cope with faith issues?
    • What happens when people move into residential or nursing homes or into hospital? What forms of ministry are appropriate?

This book, written by someone who has spent many years as a parish priest is full of reflections and suggestions. It is an attempt to guide and encourage people in this important but often neglected area of ministry.

Spirituality the heart of nursingBook: Spirituality : the heart of nursing edited by Professor Susan Ronaldson, foreword by Professor Mary Bailey, 1997

People in many cultures have long been aware of themselves as having a spirit as well as body and as being influenced by spiritual energies and spiritual presences.

Nurses know that something exists beyond the day-to-day care of people. Nurses are with people in time of crisis, when the mind turns to thoughts of what exists beyond. When a nurse can help someone to confront issues of doubt and belief, the sense of fulfillment explains why nurses do what they do.

This is a book to pick up and delve into. The chapters are written by experienced nurses in a style and language that is easy to understand. Here you will find knowledge and ideas that may help you make your own spiritual journey as well as helping people in your care to make theirs.

Spirituality:The Heart of Nursing is written by Australia nurses, from their own experience, for the benefit of other nurses. The message of the book is that nurses are special people conscious that our spiritual well-being is just as important as our physical health.

Spirituality and dementia

Spirituality is an essential part of many people’s lives and can manifest itself in unique ways. This post explores the role spirituality plays for people with dementia as well as for carers and how those around them can support the ongoing need for the spiritual aspects of life.

BetweenRememberingBook: Between remembering and forgetting: The spiritual dimensions of dementia edited by James Woodward, 2010

We are increasingly aware of the economic and emotional cost of dementia, but its spiritual dimension is often overlooked. Between Remembering and Forgetting brings together contributions from distinguished and experienced practitioners in the front line of dementia research and care to reflect on this, and to explore the implications for Churches and other faith groups, as well as for individual carers. A practical focus offers not only a critique of areas for future research and development in the field of dementia, but also directs the reader to further resources. The Editor was for ten years Director of The Leveson Centre, which brings together for study, reflection and the exchange of ideas and information those who believe that older people should not be considered passive recipients of care, but as valued and cherished members of society who can inform and enrich the lives of others. In particular the Centre is developing an understanding of spirituality as lived by older people, and aims to support them to express their spiritual awareness.

Dementia - Frank and LindaBook: Dementia: Frank and Linda’s Story: New understanding, new approaches, new hope, 2010

Frank and Linda have been together since their schooldays. They married, ran a guest house and raised children – then Frank developed dementia. “I’m losing my best friend,” said Linda. Frank’s story is almost over, but had he been born twenty years later it might have been different.

Today, thanks to a better understanding of how the brain works and how it is affected by dementia, experts and carers have developed a new way of caring that can help to hold the person together, reinforcing their individuality and even allowing them to live contentedly.

Frank and Linda’s story powerfully depicts this new approach to caregiving. It focuses on the three important aspects of dementia care – living, helping and spiritual support. Built on the foundational Christian belief in the sanctity and meaning of life, the book is filled with pointers and information, including a detailed appendix that lists organisations around the world that offer advice and help.

AJDCAugSept2014Article: Carers reveal their spiritual, emotional needs, Fiona Calvert, Australian Journal of Dementia Care 3(4), August/September 2014, p.37

Researchers from Charles Sturt University investigated the spiritual needs of carers of people with dementia. The themes of connectedness, personal well-being of the person with dementia, importance of religious, spiritual and end-of-life issues and meaning and hope were identified by the family members of a recently-deceased person with dementia.

This summary article is based on a study published by Slape J (2014) Dementia and palliative care: the spiritual needs of family members. Journal of Religion, Spirituality & Aging 26 215-230.

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

vital_connectionsBook: Vital Connections in Long-Term Care: Spiritual Resources for Staff and Residents by Julie Barton, Marita Grudzen and Ron Zielske, 2003

That spirituality is an integral component of the total well-being of older adults is being increasingly recognised. Now staff in long-term care settings can see compelling reasons for integrating spiritual care into daily care and realistic ways of putting it into practice.

Vital Connections in Long-Term Care provides an abundance of practical lessons, exercises, discussion questions, multicultural and interdenominational case examples, journaling opportunities, and implementation suggestions that can be used to sensitize staff and others to residents’ spiritual needs and the ways that these needs may be supported through special functions and everyday interactions. Learn how to: assess a resident’s spiritual needs : transcend religious orientation ; build a sense of community ; bring a spiritual dimension to celebrations and rituals ; use spirituality to help people cope with pain ; use familiar religious routines to reassure disoriented residents ; broaden application of spirituality during mealtimes ; help people cope with end-of-life issues ; and much more.

Vital Connections will help directors of nursing and nursing staff, administrators, care managers, social workers, activity directors, occupational and physical therapists, in-service trainers, instructors in aging and spirituality courses, and chaplains and parish nurses enhance their practice and transform residential care facilities into sacred spaces.

GuideCulturalSpiritualAwarenessGuide: A guide to cultural and spiritual awareness: Nursing Standard Essential Guide by Jean Serge Mootoo, 2005

This useful resource outlines the core aspects of different religions and cultures. It covers specific beliefs around personal care, death, naming and other important religious and cultural traditions. For those wanting to understand more about different cultures and religions or for those working in an aged care or hospital setting, it is a great introduction.

 dementia journalJournal: Dementia: the international journal of social research and practice: Special Issue on Spirituality and Dementia 2(3), October 2003

This special issue of Dementia brings together three perspectives related to dementia care, religion, and spirituality; the diagnosed; the family caregiver; and the clinician. It is notable that a common message is found in all three perspectives. Specifically, issues of religion and spirituality must not be ignored in the dementia experience. Spirituality and religion are significant resources – across a wide spectrum of faith perspectives – for coping with a diagnosis of dementia. (Stuckey and Gwyther (2003) Dementia 2(3), p. 291)

Editorial – Dementia, religion, and spirituality by Jon C. Stuckey and Lisa P. Gwyther, p.291

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

Satisfactions and challenges in spiritual faith and practice for persons with dementia by Lisa Snyder, p.299

In the past decade, there has been greater attention given to the role of religion and spirituality in coping with Alzheimer’s disease and related dementias. This research has focused largely on caregivers with much less attention given to those afflicted with the disease. This qualitative study examines the role of religion and spirituality in the lives of persons with dementia. Quotes from 27 individuals with Alzheimer’s and one person with frontal temporal dementia reveal the following themes: the role of religion or spirituality in finding meaning in dementia; the role of religion or spirituality in coping with the disease; the influence of dementia on religious or spiritual practices; and the influence of dementia on faith. Findings illuminate the importance of including the perspective of the person with dementia in assessments and interventions aimed at understanding and addressing the spiritual needs of families.

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

Personal spirituality of persons with early-stage dementia: is it related to perceived quality of life? by Towako Katsuno, p.315

During times of stress and uncertainty, research has documented that individuals may turn to religion and spirituality as coping resources. But what about those with dementia who have a decreased cognitive capacity? Do they also turn to religion and spirituality and are these coping resources related to overall quality of life? The objective of this study was to describe the spiritual experiences of persons with early-stage dementia and to explore the relationship between personal spirituality and perceived quality of life. Twenty-three participants were interviewed using: a semi-structured interview guide; the System of Belief Inventory (SBI); and the Quality of Life Index (QLI). Qualitative data analysis illuminated an overall theme of `faith in God’ and six related categories: beliefs; support from God; sense of meaning/purpose in life; private practice; public practice; and changes due to dementing illness. There were significant relationships between the SBI scores and the QLI scores. Findings suggest that those with early-stage dementia often find personal spirituality and its internal meanings important in coping with their life situations, that is, spirituality is associated with their perceived quality of life.

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

Faith, aging, and dementia: experiences of Christian, Jewish, and non-religious spousal caregivers and older adults by Jon C. Stuckey, p.337

Research consistently documents positive relationships among religion, spirituality, and outcomes related to well-being. The purpose of this study was to determine the degree to which spousal dementia caregivers and other older adults rely on religion and spirituality as coping resources. A total of 52 Christian, Jewish, and non-religious dementia caregivers – as well as matched comparison groups of non-caregivers – were interviewed. Qualitative data analysis yielded both common themes among the three religious groups as well as themes of distinction. The findings suggest that the search for meaning and purpose during stressful life events knows no religious or spiritual borders. Even among the non-religious and non-spiritual, purpose and meaning were found in other areas, including in caring for others, in friendships, or simply in the aesthetic joys of life.

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

Spirituality in multicultural caregivers of persons with dementia by Carol J. Farran, Olimpia Paun and Mary Horton Elliot, p.353

This qualitative study examined spirituality in a multicultural group of caregivers of persons with dementia. The work was based upon earlier focus groups that centered on general outreach to African-American caregivers. While initial questions focused on caregiving experiences, service needs, and barriers to service use, caregivers spontaneously shared their experiences concerning spirituality and caregiving. In an effort to respond to these comments and embrace a more expanded outreach approach, successive focus groups specifically addressed questions about spirituality and caregiving. Using semi-structured questionnaires, three focus groups with existing community-based groups were conducted (N = 43). Four major categories emerged from the data: teachers of the faith; the role of faith in one’s life; benefits of spirituality; and the caregiver, the care-receiver and the caregiving experience. These major categories were integrated into a spiritual model for the caregiver and the caregiving experience. Findings suggest that community-based outreach approaches should embrace an appreciation for caregivers’ faith development, expressions, and experiences of spirituality; that clinical interventions should be more proactive in responding to spiritual/religious issues; and that future research efforts should refine methods and approaches for a more integrated scientific basis that further examines relationships between spirituality and mental and physical health outcomes.

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

Religion, spirituality, and ethnicity: what it means for caregivers of persons with Alzheimer’s disease and related disorders by Marcie C. Nightingale, p.379

Caregivers of persons with Alzheimer’s disease (AD) provide an inordinate and escalating level of care. It has been postulated that: (1) religious beliefs and/or spirituality may assist individuals in their caregiving efforts; and (2) coping strategies may vary depending on ethnicity. The intent of this pilot study was to examine these theories by interviewing five African-American and five white caregivers of persons with AD using demographic and open-ended questions regarding spirituality, religious practices, and ethnicity. Five themes were identified regarding the development of the caregivers’ beliefs and practices:

  1. 1. later life development of beliefs;

  2. 2. religious training and practices;

  3. 3. family influences;

  4. 4. impact of ethnicity on caregiving; and

  5. 5. impact of spirituality and religion on caregiving.

All caregivers felt their spirituality and/or religious practices shaped how they approached providing care and all reported that they were influenced by their ethnic background. Most stated that religious practices and spirituality affected how they felt about providing care and that religion and spirituality helped them deal with difficult challenges. Through a better understanding of the importance of different coping mechanisms among caregivers, professionals are able to provide more sensitive care to persons of diverse groups.

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

Aspects of spirituality in dementia care: when clinicians tune into silence by Robert M. Lawrence, p.393

Clinicians dealing with persons with dementia are usually unable to maintain communication with the individual beyond the available psychometric tests that only give a crude evaluation of the person’s capacity to express thoughts and feelings. Evidence from the elderly with terminal illness and functional psychiatric illness shows that the individual tends to `journey’ back to reassuring and positive experiences and that religious matters are of paramount importance in dealing with terminal illness and death. Normal communication channels are precluded for individuals with dementia, as they gradually lose the ability to use understandable speech. The clinician may partly circumvent loss of communication by gathering a holistic and comprehensive view of the person’s spiritual background at the very outset and by incorporating this holistic view into the care plan.

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

Spiritual care and the person with dementia: the development of guidelines to support staff working with people with dementia by Daphne Wallace, p.421

This article outlines the production of practical guidelines for spiritual care of people with dementia. The guidelines are applicable in principle for any people in long-term residential and nursing care.

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

where two worlds touch_webBook: Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease by Jade C. Angelica, 2014

Jade Angelica shares the wisdom and hope she gleaned from caring for her mother and from many years working closely with Alzheimer’s patients and caregivers. Challenging the predominant belief that people with Alzheimer’s no longer have purpose, potential, or the capacity for meaningful relationship, Where Two Worlds Touch is both a spiritual memoir and a pastoral guide for those who love someone with Alzheimer’s. Readers will find here the reassuring words of a friend who has been there and can give advice on preserving connection, finding hope, self-care, and staying open to the possibility of grace.

ten-thousand-joys-sorrows-book-coverBook: Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s by Olivia Ames Hoblitzelle, 2010

In this inspiring memoir, Hoblitzelle describes how her husband’s Alzheimer’s diagnosis at the age of seventy-two challenged them to live the spiritual teachings they had embraced during the course of their life together. A former professor of comparative literature at Barnard, Columbia and Brandeis universities, Harrison Hoblitzelle, or Hob as he was called, became a family therapist after a midlife career shift and was ordained a Dharmacharya (senior meditation teacher) by Thich Nhat Hanh. Hob comes to life in these pages as an incredibly funny and brilliant man who continued to amaze everyone around him with his startling insights about his diminishing mind. Together Hob and Olivia agreed to live this last chapter of his life as consciously and lovingly as possible. The fruit of their journey is this wise and compassionate book, which provides guidance on maintaining hope and grace in the face of life’s greatest challenges.

spirituality and personhoodBook: Spirituality and personhood in dementia by Albert Jewell, 2011

In recent years, there has been a positive shift in attitudes towards caring for older people with dementia, with a new emphasis being placed on the person rather than the problem and towards a relationship-centred rather than individual approach. Within this context of person-centred care, there is a growing recognition of the significance of a person’s spirituality in providing them with a sense of identity and a resource for coping. Spirituality and Personhood in Dementia offers an interdisciplinary discourse on spirituality in dementia care, bringing together wide-ranging contributions from leading theoreticians, theologians, researchers and practitioners. The book provides health care professionals with both a rationale and a practical understanding of the important role spirituality can play in the affirmation of personhood. This comprehensive and thought-provoking collection includes contributions from international authors, discussion of inter-faith relations and spirituality for the non-religious, as well as chapters approaching the subject from Christian and Buddhist perspectives. This book will be valuable reading for nurses, care workers, care commissioners and pastoral support professionals interested in a more holistic and contemplative approach to caring for older people with dementia.

JDCJulyAug2008Article: Soul Sessions by Marjorie Woodbridge, Journal of Dementia Care 16(4), 2008 p.14-15

The author shares her experience of sessions which aim to meet the spiritual needs of people with dementia. Soul Sessions started as an experimental programme to meet the spiritual needs of people with dementia living in a long-term care facility in Kingston, Ontario, Canada. The initial goal of the programme was to find ways of making connections that would help these people to express their feelings about life, love and their relationship with the Divine.

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

JGN_July2014Article: Revisiting Spirituality in Aging by Barbara J. Edlund, Journal of Gerontological Nursing 40(7), 2014, p.4-5

An analysis on the findings of a number of studies on successful aging and the role of spirituality as a component of aging and care-giving by nurses.

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

JDCJulyAug2004Article: Understanding spirituality: tuning in to the inner being by Murray Lloyd, Journal of Dementia Care 12(4), 2004, p.25-27

Murray Lloyd discusses a step-by-step approach to a view of dementia care through ‘spiritually enhanced active listening’, engaging fully with the person with dementia in the context of their spiritual needs and expressions.

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

who_will_i_be_when_i_die_webBook: Who will I be when I die? by Christine Bryden, 1998

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.

Free Community Seminars on Dementia

PrintDuring 2015 there are a number of free community seminars offered by Alzheimer’s Australia which may help you understand dementia better and/or implement simple changes which can make a big difference to a person with dementia?

Note: the seminars posted here are for Victoria, if you are interested in finding out more about Community Seminars for other Australian states, please contact your local Alzheimer’s Australia office.

How dementia-friendly is your home?

Join us to examine some simple and practical design solutions that you can implement in your own home to create a dementia-friendly environment. Learn how elements such as lighting, sound and colour can be effectively used to create a calm and enabling environment. The implementation of which, may make a significant difference to the quality of life and wellbeing for a person living with dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Caulfield Park Pavilion, Balaclava Road, Caulfield VIC 3162

When? Wednesday, 15 April 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Terri Preece, Assistant Course Developer, Alzheimer’s Australia Vic

Book online: https://caulfield.eventarc.com/26264

Advances in the early diagnosis of dementia: challenges and opportunities.

The diagnosis of brain disorders such as Alzheimer’s disease is now much more precise. Whilst our knowledge of the dementias and their subtypes has evolved, we can now use developments including brain imaging and neuropsychological testing to “rule in” these specific diagnoses rather than ‘rule out’ other conditions. In a specialist centre or through a specialist in the diagnosis of cognitive disorders, a precise diagnosis can be made in the vast majority of cases.

This seminar is suitable for the general community which may also include health professionals, family carers and anyone with memory concerns.

Where? Yarra Room, Melbourne Town Hall, 90-120 Swanston Street, Melbourne VIC 3000

When? Tuesday, 19 May 2015

5:20pm – 5:40pm       Registration and refreshment

5:40pm – 6:40pm       Seminar

6:40pm – 7:10pm       Question time

Speaker: Associate Professor Michael Woodward, Director – Aged Care, Austin Health

Book online: https://melbourne.eventarc.com/26266

Dementia – Breaking down the Myths

Join us to find out what dementia is and what it is not. This seminar will explain, in simple terms, what dementia is including main causes, especially Alzheimer’s disease, key signs and symptoms and risk factors. It will also explain why changes to behaviour occur. Common myths and misconceptions about dementia will be addressed as well as concerns you might have. In addition, the seminar will explain the importance of seeking a diagnosis if noticing changes and how you can access further information as well as appropriate support and services if and when needed.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Warracknabeal Community Centre, Anzac Park, Scott St, Warracknabeal VIC 3393

When? Tuesday, 16 June 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Garrie O’Toole, Facilitator, Alzheimer’s Australia Vic

Book online: https://warracknabeal.eventarc.com/26268

Your Brain Matters

How adopting a healthier lifestyle approach will improve your brain health and may reduce your risk of developing dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Quantin Binnah Community Centre, 61 Thames Boulevard, Werribee VIC 3030, Australia

When? Tuesday, 4 August 2015

19:30 – 19:45   Registration and refreshment

19:45 – 20:45   Seminar

20:45 – 21:15   Question time

Speaker: Andrew Italia, Facilitator, Alzheimer’s Australia Vic

Book online: https://werribee.eventarc.com/29119

Bookings close: Tuesday, 28 July 2015

 Your Brain Matters

How adopting a healthier lifestyle approach will improve your brain health and may reduce your risk of developing dementia.

This seminar is suitable for the general community which may also include health professionals, family carers and anyone with memory concerns.

Where? Balla Ball Community Centre, Building 03, Casey Indoor Leisure Complex, 65 Berwick Cranbourne Road, Cranbourne East VIC 3977

When? Thursday, 8 October 2015

10:00 – 10:15   Registration and refreshment

10:15 – 11:15   Seminar

11:15 – 11:45   Question time

Speaker: Emma Dabb, Facilitator, Alzheimer’s Australia Vic

Book online: https://cranbourne.eventarc.com/29120

Bookings close: Thursday, 1 October 2015

Worried About Your Memory

Join us to find out:

how memory works, common memory changes that occur with ageing, health factors that can impact on memory function and when memory difficulties need to be investigated. This session will also provide tips on how to improve your memory.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? The Wodonga Cube, 118 Hovell Street, Wodonga VIC 3690, Australia

When? Wednesday, 21 October 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Laurel Gourlay, Community Education Coordinator, Alzheimer’s Australia Vic

Book online: https://wodonga.eventarc.com/29444

Bookings close: Wednesday, 14 October 2015

Dementia – Breaking down the Myths

Join us to find out what dementia is and what it is not. This seminar will explain, in simple terms, what dementia is including main causes, especially Alzheimer’s disease, key signs and symptoms and risk factors. It will also explain why changes to behaviour occur. Common myths and misconceptions about dementia will be addressed as well as concerns you might have. In addition, the seminar will explain the importance of seeking a diagnosis if noticing changes and how you can access further information as well as appropriate support and services if and when needed.

This seminar is suitable for the general community which may also include health professionals, family carers and people with dementia.

Where? Neerim District Cricket Club, 17 Neerim East Road, Neerim South VIC 3831

When? Wednesday, 2 December 2015

2:45pm – 3:00pm – Registration and refreshment,

3:00pm – 4:00pm – Seminar,

4:00pm – 4:30pm – Question time

Speaker: Michelle Foster, Facilitator, Alzheimer’s Australia Vic

Book online: https://neerimsouth.eventarc.com/29507

Bookings close: Wednesday, 25 November 2015

 

Still Alice

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

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

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

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

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

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

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

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

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

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

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

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

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

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