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In the first of a series of blog posts to mark Dementia Action Week, ADSS CEO Katie Antill explains why it’s so important for people with dementia to get a diagnosis.

According to the Alzheimer’s Society, around 1 in 3 people with dementia nationally don’t have a diagnosis. “In Kent the figure is even higher”, says Katie. “Only 60% of people with dementia have a diagnosis. If it was any other type of disease, like cancer, it would be a scandal. But because we’re talking about people with dementia, who may not find it easy to communicate or advocate for themselves, it’s being overlooked.”

Barriers to getting a dementia diagnosis

There are lots of reasons why people can be put off getting a diagnosis. “We’re still seeing the impact of the Covid-19 pandemic on health services,” says Katie. “There’s a lack of resources, and many people find it hard to get an appointment with their GP.”

There’s still a stigma surrounding dementia, too. And in some communities, lack of awareness about the signs and symptoms of dementia and the support that’s available can put additional barriers in the way.

5 reasons why a dementia diagnosis matters

So why is diagnosis so vital? Here are five reasons why you shouldn’t delay getting a diagnosis if you or someone you know think you may be showing signs of dementia.

1. Access to treatment and support: There’s no cure for dementia as of yet, but there are treatments that can slow the progress of the disease – and plenty of support and care. “People often think the worst when they’re diagnosed,” says Katie. “But with the right support, people can live very well with dementia.”
2. Reduced risk of a health crisis: Without a diagnosis, you’re at greater risk of ending up in hospital. “If no one knows you’ve got dementia, you won’t be getting the help you need to manage other aspects of your physical and mental health,” says Katie. “And that can quickly lead to a crisis.”
3. Take control of your finances – and your future: Getting a diagnosis is an opportunity to make advance decisions. “We always advise people to arrange a lasting power of attorney for health and finance,” says Katie. “It doesn’t mean you’re giving anything up. It just means you and your loved ones are prepared for what might happen in the future.” Find out more about making and registering a power of attorney.
4. Stay independent for longer: The more information you have, the more steps you can take to manage your dementia so you can carry on living your life. “ADSS can offer advice and support with all aspects of living with dementia, from dealing with social services to staying fit to using technology that can help, like a video doorbell,” says Katie. Want to know more? Here are some practical tips on how to keep your independence.
5. Maintain your mental health: Don’t underestimate the power of connecting, says Katie. “I’ve seen it so many times. Sometimes people who’ve just been diagnosed think their life is over. Then they come to one of our groups and suddenly they’re not alone. They see other people living well with dementia, and they realise they can do the same.”

Meet Dudley, living well with dementia

Dudley Pearce is a fantastic example of how to live well with dementia. Diagnosed with vascular dementia more than 10 years ago, Dudley has gone on to be a dementia advocate, speaking regularly about his experiences and running peer support groups in the Medway area.

“Getting out there and talking about dementia does me good and it does other people good,” says Dudley. “It would be really easy to hide away at home but I know I’d just go down hill. These peer groups where people can talk and share their experiences, they’re the best thing ever. Don’t be in denial. There’s no need. Yes, you can live better without dementia – but you can live well with it too.”

How to get a dementia diagnosis

If Dudley’s words have inspired you to get a diagnosis, here’s what to expect when you go to the GP:

Step 1: First the GP will do a simple cognition test, like asking you to remember words within a certain timeframe.

Step 2: If they think there’s an issue with how your brain is working, they’ll try to rule out other causes. “Sometimes people have dementia-like symptoms because of stress, other medications they’re on or even a vitamin deficiency,” says Katie. The GP will check all those things.”

Step 3: The GP will refer you to a specialist GP or mental health trust for more tests and a formal diagnosis. If you’re in the Dartford, Gravesham and Swanley area, you should also be referred to ADSS. “Our Dementia Coordinators can support you through diagnosis and beyond,” says Katie. “They’ll give you encouragement and reassurance, as well as the practical help you need.”

Want to know more?

At ADSS we are working hard with our partners in the NHS and social care to improve understanding of the importance of dementia and raise awareness of dementia in underserved communities. Our Dementia Coordinators are working one to one with people to support them through the diagnosis process. Contact us to find out how ADSS could support you.