A new guide has been launched that aims to help the families and friends of people living with dementia who want to understand and overcome communication hurdles commonly associated with the condition.
More than 20 families, carers and dementia specialists worked with Care UK to create the guide ‘Listen, talk, connect’, which has been launched to coincide with Dementia Awareness Week (18-24 May).
With an estimated 1 in 3 people aged over 65 living with dementia and an expected 25% 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.
Contributors share 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.
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 – and not to challenge them or force them to acknowledge the modern world. More importantly, it is essential to accept the person living with dementia for who they are now, rather than who they were. Instead, the guide urges people to understand how effective and therapeutic it can be to walk with them down memory lane.
Start a conversation
Maizie Mears-Owen, head of dementia at Care UK, 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.”
Simon Jones, head of behavioural services at Care UK, added: “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.”
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. “The day mum said that she did not know who I was will stay with me forever,” she said. “The child she had borne and loved had become someone that just visited her lots.”
It is important to make life as ‘normal’ as possible for the person with dementia, Jean added. “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.”