10 things you need to know about dementia

1. Dementia itself is not a disease – it’s actually caused by lots of different diseases. The word ‘dementia’ is just an umbrella term for the symptoms caused by these diseases such as memory loss, confusion and personality change. Alzheimer’s disease is the most common cause but other dementias include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.(1)

2. Dementia is not an inevitable part of getting older – while it’s true that the majority of people with dementia are over 65, the condition is not a normal part of getting older. The likelihood of developing dementia rises with age, but it’s not a given that an older person will develop it. In the UK over 40,000 people under 65 have dementia.(2)

3. Dementia is more than just memory loss – most people associate dementia with memory loss, but the condition affects people in a wide variety of ways. That might include changes in behaviour, confusion and disorientation, delusions and hallucinations, difficulty communicating, problems judging speeds and distances and even cravings for particular foods. Everyone’s experience of dementia is different.(3)

4. It’s possible to live an independent and active life with dementia – there are many people in the UK and across the world who are facing dementia head on and developing support mechanisms and strategies to live well with the condition. That includes anything from taking up new hobbies to making new friends or taking part in research.

5. Dementia has a bigger impact on women – with more and more women living well into their 80s, half a million women in the UK are now living with dementia.(4) The condition is the leading cause of death in women in the UK.(5) Women are also more likely to take on unpaid caring roles for other people with dementia and are more than twice as likely as men to provide intensive, 24-hour care.(6)

6. Dementia is a global issue – it’s a common myth that dementia is only an issue in the western world. The largest increases in dementia expected over the next 20 years are actually in places like China, India and Sub-Saharan Africa. Dementia is a truly global health issue, affecting 46.8 million people worldwide.(7)

7. Dementia doesn’t discriminate – dementia is a condition that can affect anyone regardless of background, education, lifestyle or status.

8. There are no treatments to stop the diseases that cause dementia – while some treatments can help people to live with their symptoms a little better, there are no treatments that slow or stop diseases like Alzheimer’s. This means that the diseases will continue to get worse over time unless new treatments can be found quickly.(8)

9. Investment in dementia research is still low – despite a welcome government focus on dementia over the past three years, research into the condition still only receives around three per cent of the government’s medical research budget.(9) Combined government and charity investment in dementia research is 6.4 times lower than cancer research.(10) Raising investment in dementia research to a similar level will help to drive forward much-needed progress towards a cure.

10. You can help – dementia research desperately needs volunteers. A lack is slowing efforts to find new preventions and treatments. A new service called ‘Join dementia research’ has launched to help people with and without dementia register their interest in taking part in studies in their area. If you or someone you know might be willing to help, you can sign up online by visiting www.joindementiaresearch.nihr.ac.uk

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