As the diagnosis and treatment of people living with dementia continues to be pushed higher up the national agenda, carers, experts and families of people living with dementia have come together to create a simple yet vital guide for everyday interaction.
Over 20 families, carers and dementia specialists have worked with Care UK ahead of Dementia Awareness Week (18-24 May) to create ‘Listen, talk, connect’ – a guide for the families and friends of people living with dementia who want to understand and overcome communication hurdles commonly associated with the emotionally-challenging illness.
With an estimated one in three people aged over 65 living with dementia and an expected 25 per cent rise in cases by 2021, the guide provides advice and insight for a growing number of people who may otherwise lose a connection with a loved one living with the condition.
Jean Shaw’s mother lived with dementia and spent time at Care UK’s Kings Court care home in County Durham. Jean helped write the guide, summing up how distressing the condition can be. Jean said: “The day mum said that she did not know who I was will stay with me forever. The child she had borne and loved had become someone that just visited her lots.”
But Jean also shares her most important tip for maintaining a strong bond with someone who has dementia: “No-one knows what they think or don’t think, but we have to make life as ‘normal’ as possible for them, even if it is hurting us inside.” what they think or don’t think, but we have to make life as ‘normal’ as possible for them, even if it is hurting us inside.”
Contributors share the personal tips and advice they wish they had known when their loved ones were first diagnosed with dementia and practical tips on how to keep interactions positive and meaningful. Central to this guidance is understanding that, for someone with dementia, their thoughts, opinions and perceptions, which may be distorted, is the only reality they know.
Maizie Mears-Owen is head of dementia at Care UK. She said: “It never gets any less painful and upsetting seeing someone who once was a loving parent, caring husband or affectionate wife lose the connection with their family as their memory travels back in time.
“As a result, visits become less frequent as people worry about how to talk to someone struggling with the disease and wonder what sort of relationship they will be able to maintain as the illness progresses.
“People tell us they just don’t know how to start a conversation with someone with dementia. However, in almost every instance it is still possible to have those longed-for conversations. It just comes down to knowing how.”
Experts explain that it is key to talk about the period that the person with dementia is living in right there and then – whether this is a happy childhood or even the honeymoon period of marriage. More importantly, it is essential to accept the person living with dementia for who they are now, rather than how you may have known them.
Simon Jones, head of behavioural services at Care UK, said: “Sometimes people may think they are actually the person they were 20 years ago – or more. Not many people realise the effect of dementia can be this pronounced, but this explains why they may not recognise you, that they may not understand why the petite blonde they married 50 years ago looks so different now.
“They probably feel just as you would if you woke up tomorrow to ﬁnd it was the year 2040 – frightened, confused and lost.”
Experts advise never to challenge the person living with dementia, or force them to acknowledge the modern world. Instead, the guide urges people to understand how effective and therapeutic it can be to walk with them down memory lane.
Families and carers also advise that words form only part of the conversation. Maizie Mears-Owen explained: “Listening is key when it comes to communicating with someone living with dementia. Not feeling listened to or heard can be a source of great anxiety and frustration to us all – and dementia will only amplify this.”
‘Listen, talk, connect’ advises that by listening and interacting regularly with a loved one, you can help someone to live a fulfilling life despite the disease’s many complex aspects, while at the same time helping to cope emotionally.
‘Listen, talk, connect’ is available to download from Care UK and paper copies are available free of charge at any Care UK care home.