Communication Matters | Let’s Talk about Dementia

Little things which can enhance the quality of person-centred communication

By Frank O’Hagan

“Everything starts and ends with successful communication.” (Anonymous)

Introduction

Carers always need to be mindful that, as far as dementia is concerned, communication can be both complex and tricky. It calls for careful consideration being given to aspects of talking, listening, reading, writing, and technological usage. Each of these forms of communication are multi-faceted and overlap to some extent. Thoughtfulness and sensitivity are required in the use of both verbal features such as speaking, writing messages, labelling, singing, and non-verbal aspects for instance pointing, signaling, touching, and so forth. All have a role to play in ensuring that clear-cut messages are conveyed meaningfully and efficiently.

The effectiveness of exchanges is dependent on the quality of a person’s physical wellbeing (such as hearing and sight), mental health (for example, awareness and comprehension), interpersonal skills (abilities in relating to others), and context (whether at home or in an unfamiliar place, levels of noise, and interruptions, etc.) Caregivers have the task of taking full account of these variables every day and sometimes even on a moment-to-moment basis in a period of crisis.

Although this post is focused mainly on communicating with persons experiencing dementia, the ideas presented may also be supportive for others with hearing loss, people with  trauma-induced problems, or having significant learning impediments. The good news is that it is amazing how dedicated carers can intuitively acquire appropriate competences to communicate capably in a variety of situations. Key skills include being a patient and expert listener, keeping questions straightforward, and never causing any feelings of humiliation or embarrassment.

Strategic approaches to think through

When trying to understand the nature of communication difficulties, attention to changes concerning the symptoms of dementia, making the most of existing circumstances, asking appropriate questions, and having the ability to cope with ‘outsiders’ are of importance (Volkmer, 2023). In practice, there is a wide range of beneficial interactions to employ during everyday pursuits. Depending on the needs of people with dementia and the setting, some methods will prove to be more successful than others. Routines to bear in mind might include the following.

• When addressing persons, face them directly and state their names at the beginning of the conversation to gain attention and to show a genuine interest in their opinions.
• Be on the outlook for confused or puzzled expressions which indicate that you are not being understood.
• Avoid statements or requests which are too intricate for the listener. Now and then, Joseph Priestley’s warning is pertinent – “The more elaborate our means of communication, the less we communicate.”
• Re-phrase or repeat succinctly if a suggestion is not being conveyed adequately. Give the listener sufficient time to reply to comments and questions.
• Try your best to prevent anyone from ‘talking over’ or ignoring a person experiencing difficulties and only conversing with you.
• To ensure that the topic or object which is being discussed is clearly comprehended, it is often helpful to explain and to point simultaneously.  (Illustrations: (1) When going out for a walk to say “Let’s go now”, point to the door, and then open it. (2) When planning to take a drive in the family car, drawing attention to the passenger seat and inviting your companion to get in.)
• Good use can be made of photographs, keepsakes, poetry, and music to recall pleasant memories. This approach – which gradually might become a shared ‘life story’ – could be particularly constructive when individuals are unsettled or distressed. If asked to switch on a playlist of favourite songs, do not be surprised if they join in singing and know all the words, even if at an advanced stage of dementia. Words which you may have forgotten!

Additionally, if you have the opportunity, please consult the ‘Footnotes’ towards the end of this article for hints which may be of value when communicating with someone who has dementia.

Addressing challenges which caregivers may encounter

Carers can enhance the quality of their own lifestyles, and those of persons for whom they care, by way of their well-judged management of practices and resources which help to administer and structure busy schedules (NHS Health Scotland, 2013). Communication, in a wide-ranging and all-embracing perception of the term, can encompass some or all of the undermentioned procedures.

• Devising comprehensive checklists to cover all essential aspects of maintenance and safety in the home such as locking the main doors particularly at night-time, closing windows, how to control the central heating system, etc.
• Sticking notices or ‘post-its’ in prominent places as reminders of when to engage in pastimes or recreational interests, have meals, and carry out household chores.
• Placing labels – maybe combined with colour-coding – on drawers, wardrobes, and cupboards to make it easy to find clothing, shoes, and utensils (Scottish Dementia Working Group, 2017).
• Making use of a traceable security wallet to safeguard items which might frequently be misplaced or lost such as keys and tickets.
• In addition, utilising technological appliances can be of great value in the forward planning of weekly duties and responsibilities. In the case of those facing difficult circumstances, programs can be devised to remind or alert carers about their timetable for tasks concerning dressing, toileting, medication, meals, outings, and so forth. Technologies also are supportive in: sending out up-to-date information on local events; providing friendship toys, games, quizzes, and other forms of entertainment; tracing someone who is missing; and directly contacting friends, neighbours, or social services when emergencies arise.

“Communication is one of the most important skills you require for a successful life.”

(Catherine Pulsifer)

Some further comments regarding non-verbal communication

Various forms of non-verbal communication, usually together with speech, are advantageous in the course of transmitting and reinforcing advice and guidance. These include:

• Gestures – perhaps raising a thumb or clapping to communicate approval for an achievement. Likewise, ‘body language’, for example facial expressions such as smiling will show happiness and pleasure whereas grimacing will convey disapproval.
• Modelling techniques – to demonstrate how to carry out specific practical activities (e.g. carefully showing someone how to use a remote control; or to stand in the correct space for taking a shower, and then asking for your actions to be copied). 
• Mirroring (occasionally referred to as adaptive interventions) – to follow or adjust to the same or similar styles, signs, sayings, and habits of persons who are being helped. In this way, a carer can learn how best to simulate and employ an individual’s preferred processes of communicating.    
• Showing love and affection – to send very positive and uplifting messages. For instance, when someone living with dementia is having a bad day, a gentle hug may be sufficient to bring solace. Similarly, it is no surprise when a kiss from a partner, a child, or grandchild turns out to be a powerful means of restoring self-confidence and assurance.

A cautionary note: “Not all tools and techniques will be suitable for every individual or every time, and so a modifiable suite is recommended to allow adaptation, for example, as dementia further progresses.” (Collins, 2022)

Supporting carers

All carers require social meetings during which they can share their lived experiences with others in order to evaluate their own inputs, learn about best communicative practices, and gain added knowledge of ‘what works’ when challenging occasions occur. Effective forms of collaboration are essential in ensuring that ‘living well with dementia’ becomes the norm within modern society.

Carers deserve and will profit from expert professional advice and assistance to enable them to extend their interpersonal skills including those pertaining to consultation, communication, and the exchange of ideas.  Nationally, they will benefit from more breaks to learn about current developments, hone their strategic competences, and evaluate which technological inputs would be most appropriate to meet their requisites.

A consistent message to carers must be to remember that they always should take good care of their own health and wellbeing. Importantly, they require to have opportunities in ascertaining on how best to relax, particularly after stressful incidents, perhaps by way of engaging in artistic activities, listening to music, watching a comedy series on television, or taking a mindful walk.

As a carer, you are an indispensable agent in safeguarding and maintaining high quality support. Your compassion and expertise matter. You matter!

Footnotes

An information sheet of Alzheimer Scotland provides the following ‘12 helpful hints’ when communicating with someone who has dementia. (1) Be calm and patient; (2) Face the person, speak clearly and slowly; (3) Make sure that you have their attention by gently touching their arm and saying their name; (4) Use short, simple sentences and say exactly what you mean; (5) Try to get one idea across at a time; (6) Allow plenty of time for the person to take in what you say and to reply; (7) Try not to confuse or embarrass the person by correcting them bluntly; (8) Use questions which ask for a simple answer; (9) Don’t ask questions which test their memory. e.g. ‘Who am I?’ or ‘What did you do yesterday?’; (10) Talk about familiar people, places and ideas; (11) Use the names of the people you are talking about instead of ‘he’ or ‘she’. It will remind the person of who you are talking about; (12) Use facial expressions and hand gestures to make yourself understood. (Alzheimer Scotland, 2023)

Also available are Tips for Talking developed by our speech and language therapy colleagues that you can find here.

Additionally, other suggestions regarding communication and dementia are available on the Better Health Channel and, for good mental health, in an article entitled ‘Good Practices: Good Mental Health among Carers’. (See links in References below).

References

1. Volkmer, A. and others (2023) – Giving Voice to People with Dementia and Their Carers: The Impact of Communication Difficulties on Everyday Conversations. International Journal of Qualitative Methods, Volume 22.

2. NHS Health Scotland (2013) – Younger people with dementia. Living well with your diagnosis.

3. Scottish Dementia Working Group (2017) – Our “Top Tips” for living well with dementia. Alzheimer Scotland – Action on Dementia.

4. Collins, R. and others (2022) – Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme. Dementia, Volume 21, Issue 4.

5. Alzheimer Scotland (2023) Activities: a guide for carers of people with dementia. Link for communication: https://www.alzscot.org/our-work/dementia-support/information-sheets/communicating-with-someone-who-has-dementia-12-helpful-hints

6. Better Health Channel link: www.betterhealth.vic.gov.au.dementia-communication

7. ‘Good Practices: Good Mental Health among Carers’ link: https://improvingcareand.education/home/good-mental-health/

8. A related animation entitled “Communication Matters: The Little Things Which Can Enhance the Quality of Person-Centred Communication” has been designed and produced by Caitlin Quinn and Lucy Beckett.

Acknowledgements

My thanks are due to Elaine Hunter, National AHP Consultant, Alzheimer Scotland/Visiting Professor, School of Health and Social Care, Edinburgh Napier University, and to Caitlin Quinn and Lucy Beckett, students of speech and language therapy, University of Strathclyde, for their very helpful support and for providing splendid company during the writing of this paper.

COMING SOON. A co-designed animation in partnership with Frank and the Caitlin and Lucy as part of their impact project internship with Alzheimer Scotland. Follow @NDCAN_Scotland and @AHPDementia to find out more.

Frank has shared this post already at his own blog site here and gave us permission to repost.

If you would like to find out more about the National Dementia Carers Action Network, you can click on this link here.