Nearly four in 10 people actively avoid visiting relatives living with dementia because of how difficult it can be.
The poll of 2,000 adults with relatives living with dementia found 37 per cent are unsure how best to communicate with the person.
While a quarter (26 per cent) described seeing their relative as 'too painful', the same number (26 per cent) said visiting was made more difficult due to the difficulties communicating with them, as 22 per cent feel uncertain about how to behave or what to say.
Almost six in 10 (57 per cent) believed these barriers often prevent meaningful interactions with their loved one.
It also emerged 53 per cent fear the day their relative no longer recognises them – the number one worry among those polled.
Other anxieties included their loved ones feeling lonely (45 per cent) or becoming non-verbal and unable to express themselves (41 per cent).
To support relatives, Care UK [careuk.com/bigdementiaconversation], which commissioned the research, has released a new guide, “Staying connected: A guide to dementia-friendly conversations”, featuring expert advice on how to approach a relative living with the condition, especially when they become confused.
Jo Crossland, head of dementia and lifestyle at the nationwide care home provider, said: “When dementia progresses and the person living with it begins to exhibit more symptoms, it can be difficult for relatives and family carers to know what to do or say.
“We know just how challenging it can be to watch a loved one change in ways you don’t fully understand, which is why we want to show people you can still have meaningful interactions with relatives living with dementia by relaunching our Big Dementia Conversation.
“The best thing you can do is be patient and remember that they are still a person you care about – they may just be seeing and understanding the world a bit differently than before.”
The survey also found 38 per cent of respondents lack confidence in their ability to interact with someone who has dementia.
The most challenging aspects ranged from having to repeat things (43 per cent) and struggling to understand exactly what the person with dementia means (40 per cent), to not being able to reference shared memories from the past.
Along with moments when their family member doesn’t recognise them (42 per cent), another difficult reality for 34 per cent was the change in the way their loved one communicates since their diagnosis.
To overcome these barriers, top methods cited were using simple, clear language (50 per cent), speaking slowly and calmly (50 per cent), and listening patiently without interrupting (47 per cent).
Nearly half (47 per cent) also found being in a calm, quiet environment, and speaking to their loved one face-to-face helpful.
Yet, 67 per cent of respondents had never received any guidance or training on how to interact with someone with dementia.
And 62 per cent agreed there currently isn’t enough support available for families affected by the condition, with 76 per cent likely to seek out resources or advice to help improve their communication, according to the OnePoll.com figures.
Key kinds of support they were looking for included guidance from dementia care professionals (52 per cent) and support groups for family members (34 per cent).
Jo Crossland added: “Awareness and understanding of dementia remains low, so people whose relatives have been diagnosed with the condition deserve to have access to the right resources to continue having a meaningful relationship with their loved ones.
“It is our hope that the new guide will be able to provide both information and comfort to people supporting loved ones with this condition and enable them to feel more confident during conversations.
“Our goal is to help break down the existing barriers to meaningful communication and ensure nothing stands in the way of families being together.”
