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The government’s 2023 Dementia Commission report said that 36% of people with dementia go undiagnosed in the UK.
That’s unfortunate because, as Alzheimer’s Society writes, “being diagnosed at an earlier stage gives you a chance to adjust and get things you need”. It also helps you to access “any benefits or legal protection you may be entitled to”.
If you’re concerned that someone you care about may have dementia, you likely want to help them get as early a diagnosis as possible.
And even if an older relative or friend shows no sign of dementia, most people want to know what they would like to happen if they do develop Alzheimer’s or another dementia.
But Rob Martin, Managing Director of Care Services at non-profit care and housing service Anchor, told HuffPost UK: “As a nation, we are remarkably reluctant to think and talk about dementia.”
“It’s a topic that some people find uncomfortable or difficult to discuss, and many don’t want to cause distress… by broaching the subject,” he added.
“But the simple truth is that open and honest conversations are a vital starting point to preparing ourselves and loved ones for what might come in our later life.”
How can I start a conversation about dementia
“Using the right questions and conversation starters can help families begin important conversations in a positive and proactive manner – to ensure the right decisions can be made at the right time, and you also know where to turn for practical information and support,” Rob Martin told HuffPost UK.
Though there’s often no easy way to have the conversation, the care expert has shared four approaches and questions that could make the process go smoother. These are:
1. Involve them in the discussion, and show them they are valued
- “I’d like to talk about something with you, but first I’d like to get your point of view. Is now a good time?” is a great opening line, Rob says.
2. Create a safe space to discuss shared anxieties about the future
- Asking “What are your/our concerns about getting older? What could happen if we don’t do anything about those concerns?” can help your loved one to express their worries.
3. Plan for the future, addressing their preferences for care
- Asking “What kind of place would you like to live in if you were no longer able to stay in your own home?” is a good way to address your concerns without removing the person’s autonomy.
- “Asking What kind of experience would you like to have as you grow older?” can help you work out their other preferences for care.
4. Address how future plans could adapt or change depending on illness or dementia
- Asking “How would you want to be looked after should you become unwell or are diagnosed with dementia” can give the person you’re talking to permission to discuss feelings they might not feel comfortable bringing up otherwise.
“In having these conversations, it’s also really important to acknowledge that this might be a difficult discussion, or seem far in the future, but that it’s important you’re all on the same page and check in if anything changes,” Rob added.
But “by breaking the silence on dementia and starting these conversations early, we can make sure the right decisions are made at the right time, and that there’s a plan in place to help ensure the best care is given”.
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