How to communicate well with someone living with dementia (Part Two)

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Part Two: Words aren’t everything

The Language of Dementia

Unfortunately, speech and language deterioration is almost inevitable for a person living with dementia. The reasons are multifarious — among others, the person’s natural language and vocabulary are increasingly challenged by reduced mental capacity. Reduced brain-processing power means that they may struggle to understand what is being said to them. Loss of short-term memory makes it harder for them to orientate themselves in a narrative, or in conversation. They may be unable to respond at we would consider to be a ‘normal’ speed. They might return to using another language learnt in their childhood.

But words aren’t everything

We can communicate better with a person living with dementia by using overt and subtle, non-verbal language that conveys meaning beyond the words — especially if it mirrors theirs. Mirroring non-verbal cues helps to give clarity to our engagement, making it easier for us to understand one another.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

And it is not just what we say, but how we say it — our tone of voice.

Tone of voice matters, because it helps us to express the feelings behind the words we use, and may reflect among other things, our social culture, where we come from, our age, social status, education and command of language, our sense of ourselves, our attitudes, our state of health and our current mood. The timbre of our voice may help or hinder our connection with someone, even if we may be hardly, if ever, conscious of it.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

What are the ingredients that make up tone of voice?

These include natural vocal musicality, pitch, depth and intensity, the clarity and sound of our words, the accentuation we use, the speed at which we speak and more generally, the personality and outlook we convey by these means.

Even the simplest of questions, such as “How are you today, John?” may be imbued with a range of meanings depending on the tone of voice used, from genuine authenticity to patronisation, from positivity or cheeriness, to sadness or negativity. How many underlying meanings are you able to convey, just by changing your tone of voice and accentuation in the sample question?

Being more aware of how we sound can help improve our relationships with everyone

How to communicate well with someone living with dementia (Part One)

Photo by Harli Marten on Unsplash

 

Part One: Beyond the words

“Nonverbal communication forms a social language that is in many ways richer and more fundamental than our words.” 

 

Leonard Mlodinow

Body and paralanguage always speak louder than the words we use.

When we are alert to these, communication can be more effective, helping us to better understand the main — and also the underlying messages being conveyed.

When talking with a person living with dementia, they are particularly important to understand, for a few reasons. Firstly, the person’s reliance on non-verbal communication may accelerate as their natural language skills become increasingly compromised by the condition. Secondly, their sense of self alters subtly over time. Thirdly, the speed at which the person is able to process and absorb information is reduced. Finally, emotional feelings may rise to the surface (sometimes quite unexpectedly) in situations that challenge them in some way. All these facors contribute to how the person is able to hear, listen and respond.

Approximately 60% of our interactions use non-verbal communication.

These include proxemics (the space between us), kinesics (our body and head movements), hand gestures and posture. Facial expression and eye contact are key, of course. Perhaps crucially, a person’s tone of voice, intonation, pitch and speed of speaking, hesitation noises, gestures and facial expressions, make a significant difference to how we perceive both them and their message. We rely more heavily on this paralanguage to make sense of the world and our experiences than we might realise, or like to admit.

For any person, a diagnosis of dementia can feel like the beginning of the end.

Hardly surprising perhaps, given the prevailing, dismal medical model with which dementia is often viewed: as a journey of emptiness and inexorable physical and mental decline.

This depersonalised stereotyping over-simplifies the experience, presenting a one-dimensional view of personhood, overly dominated by cognition and short-term memory loss. Of course, as the disease progresses, the person’s thoughts and words inevitably become more tangled and confused.

However, a broader (and more humane) definition recognises that a person is far more than their thoughts alone and that together with their many long-term memories and experiences, the essence of the person remains, despite changes to the brain.

To keep well-connected to a person living with the condition, we need to become increasingly attentive to their non-verbal clues — as well as our own. We need to try to be more aware of what we are both communicating, beyond the words.

Age UK Statistics

1,000 words from Age UK on the statistics that should alarm and shame the country

This report comes from Care Industry News on 9 February 2020. Sadly, it makes pretty depressing reading.

1,000 words from Age UK on the statistics that should alarm and shame the country New Age UK analysis finds that in the last 12 months, about 700,000 requests for formal care and support, equivalent to 51% of all applications, have been made by older people and yet have resulted in them not receiving formal care services.

This is equivalent to 2,000 claims from older people being unsuccessful each day, or 80 every hour. In some of these cases, the older person was found by their council not to meet the eligibility criteria set for the social care system, and that was the end of it (23% of all requests for help); while in others the older person was found ineligible, but their council then referred them onto other services in the hope that they could assist, including their local Age UK (46% of all requests for help).

The charity says that these figures show how very difficult it is now to qualify for care within our shrunken social care system: between 2010/11 and 2018/19 total spending on adult social care fell by £86 million in real terms, representing a 4% reduction in local authority spending. While spending has now mostly recovered from its lowest point in 2014/15, the older and disabled population has meanwhile significantly increased, meaning social care spending per head of the adult population has fallen by 6% per person over the same time period. Because councils are so stretched, it is very concerning but not at all surprising that so many older people who are asking for help are being turned away.

Age UK’s new analysis also helps to explain why the numbers of older people living with some unmet need for care are so high and continuing to rise: 1.5 million over 65s in England are going without all the help they need to carry out at least one essential ‘Activity of Daily Living’. If you ask for help from your council and are turned down for it and you don’t have family or friends to step in or enough money to fund your own service then you are likely to find yourself included in this growing army of older people who are soldiering on unsupported, despite having some need for care.

Age UK is drawing attention to these findings as it publishes a new report highlighting the battle that older people and their families often face in trying to secure social care. In ‘Behind the Headlines: Battling to get care’, the Charity describes the social care system as being “woefully inadequate for the job now required of it, despite the best efforts of the good people working in it.”

Over a fifth of all the calls to Age UK’s information and advice line concern social care, a figure approaching 35,000 last year. The report draws on the content of these calls and recounts the very difficult experiences older people and their families are going through as they try to secure the help with everyday tasks like washing, eating and toileting they badly need.

Caroline Abrahams, Age UK’s charity director, said: “The fact that 2,000 older people are being turned down for care every day demonstrates both the enormous numbers impacted by our ramshackle care system and how serious the problems it faces have now become. We don’t know what happens to these older people whose applications are rejected, but inevitably some have no choice but to struggle on alone. Good social care helps to keep older people fit and well, so if you are forced to go without it’s a recipe for emerging health problems to turn into crises, possibly leading to a hospital stay that might otherwise have been avoided and a decline in your health from which you may never fully recover.”

“Faced with too much demand and too little supply, our social care system is effectively under siege. Councils do their best with the resources they have but there are simply not enough to go around. One result is this vast number of older people whose applications for help are rejected and another the long waits for an assessment to have your case looked into at all. Our report is heart-rending stories of older people in need who are being comprehensively let down, and the nightmarish situations created for them and their families. Real suffering is going on, with older people’s lives being diminished and, in some cases, we fear, being cut short.”

“The Prime Minister has promised to fix social care, and our new report shows why it’s so vital for our older population that he keeps his word. For some, tragically, it is already too late.”

Mike Padgham, Chair of the Independent Care Group, said: “The Age UK statistics are alarming and shame us as a country. They should make the Government sit up, listen and act – beginning with ploughing more money into social care in next month’s Budget.

“Some £8bn has been cut from local authority social care budgets since 2010 so it should not come as a surprise that more and more older and vulnerable people – our mothers, fathers, aunts, uncles, brothers, sisters – cannot get the care they need to enjoy a basic, decent quality of life.

“In 2020 it is a national disgrace, degrading and dehumanising and action to solve the crisis in social care is long overdue.

“We have total sympathy with local authorities who have had their budgets cut savagely in the past decade to the point where they can’t deliver care to those who need it most.
“Now that key milestones in Brexit are out of the way it is time for the Government to turn its attention to the number one domestic priority – social care.

“Boris Johnson promised to sort out social care ‘once and for all’ when he became Prime Minister and again at the General Election, but all we have been promised is ‘cross-party talks’ and a solution within the five years of this parliament.

“Well, as these figures demonstrate, we cannot wait five years. There is no time for more talks and reports, we need to get social care done now, and the Government must start by pumping funding into care at the Budget. At least £8bn extra is needed, just to reach the levels we had in 2010, and we need to go much further than that so that everyone who needs care can get it.”

Listening – a dog’s life

Woof, Woof!

Listening is one of the most important skills any of us have. How well we listen has a major impact on the quality of all our relationships with others. We listen to obtain information, to learn to understand, 
for enjoyment and fun. Given all the listening we do, it might be reasonable to expect that we’d be quite good at it. Sadly, not so.
 
Depending on the study being quoted, we remember a dismal 25-50% of what we hear. That means that when friends, loved-ones, colleagues, or anyone else talk to us for, say, 10 minutes, we’re only likely to hear between 2½-5 minutes of what they say.
 
It takes concentration and determination to be an active listener and old habits are hard to break, but it is possible. Even dogs do it better – studies show that pets pay attention “not only to who we are and how we say things, but also to what we say”.

Listening workshops can help care professionals – and us, to listen better. Effective, or Active listening might be described as ‘deliberate listening without passing judgement’. It means reminding yourself constantly that your aim is to truly hear what the other person is saying.

This means parking all other thoughts and setting aside behaviours that might be distracting you and avoiding thinking about your reply, so really concentrating on the person and their message.

The workshops offer tried and tested exercises, games and reflective discussions to help participants listen better.

In subsequent impact measurement, a participant nurse reported that not only his work, but also his marriage had improved as a result; another carer said she was now able to build a detailed care plan for someone with dementia who had no friends or family left alive. 

We asked residents to share any outcomes they had noticed. One spoke of feeling more valued, “being listened to makes you feel that what you have to say is worth something”. Sorry, what’s that you said?

Chatterbox groups

Chatterbox Groups

Being listened to matters. People living in care homes need meaningful conversation every much as do we who live independently – it’s part of our wellbeing.
 
In a care setting, if a person’s dementia is advanced, staff may struggle to engage with them. Few carers have any training in meaningful conversation – added to which, their ages, life experiences and possibly social cultures may be very different. 
 
According to a study by Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who have deep, meaningful conversations also have happier lives. People who spend less time alone and more time talking with others have a greater sense of personal well-being, suggests the study, published in the journal of the Association for Psychological Science. Co-author Simine Vazire PhD, assistant Professor of Psychology in Arts & Sciences at Washington University says, “having more conversation appears to be associated with a greater sense of happiness among the people in the study.” The happiest were those who engaged often in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk. 
 
This finding is also true of people living with dementia. When we value people’s histories, co-incidentally, we help give them a kind of meaningful future. If we fail to listen to their rich life experiences, we fail to value them. Stories of learning how to make do, mend and keep your chin up in challenging times are as relevant now as they ever were. It can be oddly comforting for us to hear the experiences of a person who has ‘come through’ with a longer perspective on life.
 
Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 

A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.

Chatterbox Groups

Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 


A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.