Effective communication is paramount in working with a person with dementia where verbal communication may have declined (expressive ability) and where comprehension of language may be difficult (receptive ability). Communication cannot be left to chance but needs to be effectively thought through and managed from a theoretical and personal perspective. That is, what does theory tell me about how to communicate and how do I use myself as a tool in this exchange?
Communication in general relies on both verbal and non-verbal exchanges of information and is described as a sophisticated art (Junaid and Hegde, 2007) and noted as the heart of intervention (Lishman, 2009). Listening needs to be a physical, cerebral and emotional act if we are to ensure its effectiveness and if we are to demonstrate empathy within a practice situation. Lynch (2014) suggests that there is a distinct difference between listening and hearing – with hearing being the more important of the two. He suggests people can listen without necessarily hearing, but not vice versa. Hearing requires engagement and not just physical presence.
Your demonstration of your presence is particularly important when working with people with dementia to ensure they remain engaged with you in dialogue. They are more likely to remember how they felt during the exchange rather than the actual content, so your body language and attentiveness is of paramount importance.
Communication is a valuable ‘end’ in itself as it supports the individual’s sense of self; their personhood as Kitwood (1997) puts it. What gives people a sense of self is how others are with them and how they react to them. In maintaining our sense of self we need others to legitimise who we are in a social situation. But for the practitioner communication is also a means to an end in terms of information gathering with a view to assessment and support planning. What can appear to be simple conversation – chatting about their life, their family, likes, dislikes and aspirations – is rich in information for the social worker.
It is advisable when working with anyone, but particularly those with dementia, to ‘tap into’ this rich seam of information. This type of general conversation can form part of the assessment in itself as it helps you explore the person’s short- and long-term memory, their ability to articulate, their language skills, their ability to track conversation and return to earlier themes; all of which gives you valuable information in how to continue to communicate. You will need a constant cycle of reflection regarding the person’s communication skills and preferences during the interaction to ensure a successful exchange.
The use of silence should not be underestimated in any communication. For people with dementia it can give space to think and consider a response and as long as the silence does not become overbearing it can be a valuable tool. Silence can also communicate other things such as an individual’s annoyance with a question, or that it is not a question they want to answer at that time. Interpreting which questions are answered and which are not may enhance overall understanding of the interaction and indeed the person (Lynch 2014).
You will need to work at the pace, and on the subject matter, of the person’s choosing, at times gently responding to, and steering, the conversation. After all, this conversation has a purpose but needs to feel natural and not invasive, although invariably there will be some questions and subjects that simply need to be addressed at an appropriate time. When in conversation it is important to ‘listen to’ the emotion attached to words or phrases; the ‘music behind the words’ as Sutton (Lishman, 2009) puts it. This will give you an indication of the importance of some statements in relation to the individual’s view. For example when someone says ‘my son can only visit once a week as he is really busy’ you may be able to note in the intonation whether the person is comfortable with this and accepts it or is annoyed by it.
What practical things help? Small et al (2003) and Wilson et al (2012) give us some clear observations, and some debate, on how to approach communication with someone with dementia. Good practice would lead us to, eliminate environmental distractions and create an atmosphere where it is apparent time is available so that the person is not rushed. You should use short, simple sentences, which include only one question or point and use repetition and paraphrasing to ensure understanding before moving on. You should allow plenty of time to respond to each question and not to interrupt, finish or pre-empt answers; and encourage people to talk around a subject where they may be having difficulties with finding the word or recalling information.
There is also a suggestion that the use of pronouns can lead to problems so it is better to say, “Mary visits twice a week”, rather than, “she visits twice a week”. Being specific is helpful. There is some discussion around slowing down speech, but if speech is slowed too much the person may not be able to retain the information from the start of the sentence once the end of the sentence is reached. This point serves only to illustrate that the need to adjust your communication style within a theoretical practice framework is essential.
Other practical considerations to bear in mind include thinking about the time of day you talk to someone with dementia as there is a tendency for mental ability to fluctuate throughout the day and it often declines the later it gets. The impact of medication, particularly where it causes drowsiness, will also need to be considered.
Particularly for those in the later stages of dementia, but universally to a significant degree, is the importance of tone, volume, and pace of conversation where understanding of vocabulary is compromised. Where expressive language has declined for the individual, conversational communication remains important in terms of the person’s view of self and in developing your understanding of them. Where people can no longer communicate verbally, communicating continues to be a human urge and if denied it denies the person.
People will find ways to communicate at a fundamental level such as facial expression, gestures, and movement (Ellis and Astell, 2010). Specific information may need to be sourced from elsewhere, but the person with dementia needs to remain included in the whole process even where the level of factual, accurate information is limited. Continue to maintain eye contact with them and ask questions even if someone ultimately has to answer the question on their behalf. This element of human contact and inclusion signifies that the individual remains important within the overall exchange.
Communication remains key to both including the person and gathering information during every aspect of working with someone with dementia, from assessment to discussing personal budgets, from putting together a support plan and reviewing it, to safeguarding and assessing risk. Clarity is of the utmost importance. It is important to use non-ambiguous language, to break complex information down into smaller statements or questions, and to return to statements or questions to confirm understanding. You may want to think of other ways like leaflets or written notes of main points to help the person ‘remember’ what has been discussed. They may need a reference point to scaffold their memories.
Ellis, M., & Astell, A. (2010). Communication and personhood in advanced dementia. Healthcare Counselling and Psychotherapy Journal, April, 32-35.
Junaid, O., & Hegde, S. (2007) Supportive psychotherapy in dementia, Psychiatric Treatment vol. 13, 17–23
Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First (Rethinking Ageing), Open Univerity Press
Lishman, J. (2009) Communication in Social Work, Palgave Macmillan
Lynch, R., (2014) Social Work Practice with Older People (A Positive Person-Centred Approach), Sage
Small, J, Gutman, G, Makela, S, & Hillhouse, B 2003, ‘Effectiveness of communication strategies used by caregivers of persons with Alzheimer’s disease during activities of daily living’, Journal Of Speech, Language & Hearing Research, 46, 2, pp. 353-367
Wilson, R., Rochon, E., Mihailidis, A., & Leonard, C. (2012) Examining Success of Communication Strategies Used by Formal Caregivers Assisting Individuals With Alzheimer’s Disease During an Activity of Daily Living Journal of Speech, Language, and Hearing Research, Vol. 55, 328-341