Dementia Awareness Month: You Are Not Alone – communicating, socialising and friendships

For a person with dementia, their family and other carers, one of the hardest changes is a sense of isolation. Today’s post is about socialising, friendships and communicating with people with dementia. It includes feedback from people with dementia on what matters to them, and there’s no better source of information!

YouTube: You Are Not Alone, Alzheimer’s Australia

hwdeffectivecommnWebpage: Effective Communication, Alzheimer’s Australia Vic

Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia, their families and carers. In these short, helpful videos you will learn some practical communication tips.

communicating-across-dementiaBook: Communicating Across Dementia: How to Talk, Listen, Provide Stimulation and Give Comfort by Stephen Miller (2015)

Information and advice for making vital communication easier and more effective.

If someone close to you has dementia (Alzheimer’s Disease is the most common type) they need your help. You will know that communication has become more difficult and frustrating. This jargon-free book explains why this happens and how you can make important improvements by re-thinking your whole approach. Areas covered include:
– Creating the right conditions for good communication
– Making conversation easier
– Non-verbal communication
– Adaptations to the home
– Finding stimulating activities
– Dealing with difficult situations

Looking after a person with dementia involves many challenges. Good and effective communication can help to make these challenges more manageable and greatly reduce stress levels, both in the person with dementia and in his or her carer.

jdc_julyaug2016Article: Communication skills: emPoWereD Conversations, Sue Bellass, Phil McEvoy and Tracy Williamson, The Journal of Dementia Care, July-August 2016, p.16&18

Ordinary communication between people can be disrupted by dementia, but a new training programme offers a solution.

“Communication is a core aspect of human experience and has a profound effect on the quality of our lives. Being able to express ourselves, and to understand other people, shapes our sense of who we are and how we connect with our social world. The experience of dementia can disrupt interactions between people, potentially leading to frustration, misunderstandings and alienation (Snyder 2006). Here, we will report on a communication training programme designed to overcome some of these difficulties.” (p.16)

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

Toolkit: Community Café Toolkit, Alzheimer’s Australia Vic

If you like getting involved, setting up a local Community Cafe may be right for you.

The toolkit contains:

  • A manual with instructions on ‘how to’ establish and run a community café in your region; and
  • Tools in the form of checklists, templates and resources to assist you in getting started and to assist in the day-to-day running of your café.

To request your copy of the Community Café Toolkit please click this link and then follow the prompts. If you are in Victoria, Australia please use this link instead.

aja351coverArticle: Facing the times: A young onset dementia support group: FacebookTM style, Denise Craig and Edward Strivens, p.48-53, Australasian Journal on Ageing, Vol. 35, Iss. 1, March 2016

Young onset dementia accounts for up to 1 in 10 dementia diagnoses. Those diagnosed face premature transition into the realm of aged care services and adjustment to an illness of ageing prior to age 65. To help elicit communication of the perceived psychosocial needs of this group, provide a platform to gain peer support and advocate for increased awareness, the Young Onset Dementia Support Group was established on the social networking site, FacebookTM. Followers post comments, read educational or otherwise interesting news feeds, share inspirational quotes and access others living with dementia worldwide. Facebook provides a means of rapid global reach in a way that allows people with dementia to increase their communications and potentially reduce isolation. This paper was authored by the page administrators. We aim to highlight the promising utility of a social network platform just entering its stride amongst health communication initiatives.

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

when-someone-you-know-has-dementiaBook Chapter: Chapter 5, What Are Friends For? from When someone you know has dementia : practical advice for families and caregivers by June Andrews, 2016

“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 embarrassing or inappropriate and you just don’t know what would make a difference. Reading this chapter will provide guidance what often does make a difference, based on what people with dementia their family caregivers say.” (p.79)

For those living in Victoria

Socialise: Memory Lane Cafes, Alzheimer’s Australia Vicmemory-lane-cafe

The Memory Lane Café program is available for people with dementia and their family members.

The Australian and Victorian governments, under the Home and Community Care Program, have provided  funding for Café Style Support Programs that are offered throughout Victoria.

These cafés provide an opportunity for people with dementia and their family members to enjoy time together with some refreshments and entertainment, in the company of people in a similar situation to themselves.  Alzheimer’s Australia Vic counselling staff and trained volunteers also attend.

For more information, click here.

dam2016publectPublic Lecture: International action on dementia, Dr Ron Petersen, 22 September 2016

Dementia Awareness Month 2016 signature lecture in Melbourne will feature international dementia expert, Dr Ron Peterson (Mayo Clinic, USA). Dr Petersen will share his latest insights and research findings about dementia and the US and global experiences in establishing a national dementia strategy. Dr Petersen is a world leader in the field of Alzheimer’s disease and dementia. He is Director of the Mayo Clinic in the U.S. and was also Ronald Reagan’s personal physician and treated the former President of America’s Alzheimer’s disease.

Dr Petersen will discuss:

  • Latest insights and research findings about mild cognitive impairment and dementia
  • The US and global experiences in establishing a national dementia strategy

Who is this lecture for?

The general public, people with dementia, carers, service providers, health and aged care professionals, students, businesses and local government representatives are invited to attend this lecture.

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.

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.