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.
Book: 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)
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
DVD: 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.
Book: 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.
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.
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.
Book: 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.
Resource: 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.
Article: 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.
People 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.
Book: 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.
Book: 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.