Australian of the year 2017 – National finalist – Kate Swaffer

kateswaffer

Kate Swaffer

As we wait for the announcement of  Australian of the year* this post looks at some of the writings of deserving nominee and South Australian of the Year,  Kate Swaffer.

A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia .

An accomplished author and poet, Kate has written blogs,  books and articles advocating for life beyond a diagnosis of dementia. Kate’s writings  provide an invaluable insight into one person’s journey and thoughts about living with dementia.

*2017 Australian of the Year will be announced on the eve of Australia Day, Wednesday 25th January. Congratulations and all the best to all nominees.

Kate’s blog


kateswaffer_blog2017
A recent 2017 post is a great revisiting of some of the topics Kate has covered over the years.

Ramblings from the past, as I think about 2017…

 

 

 

 

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

what-the-hell-happened-to-my-brain

With chapter headings such as Why me, why this, why now?; The dementia train and not sweating the small stuff and Reactions to dementia: yours, mine, others Kate tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

 

Editorial: Dementia and Prescribed Disengagement™  /  Kate Swaffer
Dementia: the international journal of social research and practice, Vol. 14, No. 1, January 2015, p.3-6

dementia journalFollowing a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?..  Access full text

Article: Not just a ‘challenging behaviour’  /  Kate Swaffer
Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.21-24

ajdc_junjul2015

Kate highlights her concerns that widespread use of the terms ‘challenging behaviours’ and ‘Behavioural and Psychological Symptoms of Dementia’ (BPSD), over-perscription of antipsychotic medications and the guidelines used to ‘manage’ BPSD are having a negative impact on care, whilst fuelling stigma and discrimination.

 

Article: Reinvesting in life is the best prescription  /  Kate Swaffer
Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.31-32

ajdc_dec14jan15When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’ as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.

 

Book: Diagnosed with Alzheimers or another dementia  /  Kate Swaffer & Lee-Fay Low  (2016)

diagnosed-with-alzheimers

This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (from introduction by Prof Henry Brodarty)

 

 

To find a full list of Kate’s books, articles, poetry and presentations go to her website

https://kateswaffer.com/cv/

 

 

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

PurposefulActivitiesMontessoriWebsite: Purposeful activities for people with dementia: a resource, Alzheimer’s Australia VIC, 2015

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.

dementia journalArticle: 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