Just as cancer was our biggest fear in the sixties and seventies, the ‘D’ word has now replaced the ‘C’ word to become the condition we dare not discuss too much. If someone you love has dementia, this can come as a bitter blow. Many family carers find themselves facing all kinds of hurtful misconceptions, largely a result of fear and ignorance. And if you’re new to caring you might not even realise that some of the things people say aren’t only unhelpful, they’re actually inaccurate.
Here’s how to empower yourself and beat the stigma of dementia
1. Listen and learn
Knowledge is power, so if you’re new to caring start by finding out all you can about dementia. The better informed you are, the more able you will be to separate the facts from the fiction – and point this out to others when they say something that isn’t correct. Dementia is NOT a normal part of ageing, nor is it a mental illness, it doesn’t always cause aggression either and it definitely doesn’t mean that the person you care about has to immediately give up their independence.
2. Talk about it
You may find that other people (including friends and family) find it difficult to talk about Alzheimer’s or dementia, especially if they think you might become upset or they might say ‘something wrong.’ Start by trying to talk to your close friends about it. Tell them it doesn’t matter if they don’t know anything about dementia, you simply want to talk, off load, vent your feelings and share what’s happening…and if you do get upset, it isn’t their fault.
If you don’t think your current social circle will ‘get it’ try a support group where you can find like-minded people going through similar challenges. Our Dementia Support Group is free and easy to join.
3. Be honest
A dementia diagnosis can be so upsetting to family and friends that they try to pretend it isn’t happening. This can be easier to do if you don’t see the person with dementia very often but is rather more difficult if you have a closer relationship. Denial can also lead to family rows and disputes about ‘how bad’ the dementia is, which aren’t usually constructive. Of course, some parts of the dementia journey can be very difficult. If you’re experiencing issues that feel frightening or upsetting, don’t be afraid to speak out and ask for help. Sharing experiences, whether with friends, other caregivers or professionals doesn’t only help you, it helps others to understand the condition far more. They, in turn, will be able to share their learning with others.
4. Never hide away
No matter how advanced their dementia, if the person you care for enjoys going out, keep taking them. The more people with dementia are seen living their lives, the more familiar everyone will become with the condition – and the easier it becomes to understand.
You aren’t alone. Here’s what others are doing to fight the stigma of dementia
The Government is listening
The Prime Minister’s Challenge on Dementia 2020, published in February 2015, put dementia on the political agenda, outlining the Government’s ambition to create a society where ‘the public thinks and feels differently about dementia, where there is less fear, stigma and discrimination, and more understanding.’
The younger generation is getting involved
Since 2012, schools have been participating in another Government initiative to increase knowledge and understanding of dementia. The Alzheimer Society’s Youth Engagement Project, launched two years ago, is helping to nurture a dementia friendly generation who can, in turn, help their local communities. Children as young as five are getting involved in a project called A Million Hands, in a partnership with The Scouts Association, which is allowing young people to take social action on issues they care about, including dementia. All these projects bode well for the future.
Business and communities are doing their bit
Staff in banks and supermarkets, corner shops and hairdressers are all receiving dementia training, as are NHS staff (everyone from hospital porters to surgeons). The concept of a ‘dementia-friendly’ community is now well established and growing rapidly.
There’s been a cultural shift
In recent years dementia has proved fertile ground for many creative projects. Award winning films such as Lisa Genova’s Still Alice, ground-breaking documentaries such as Alive Inside: A Story of Music and Memory, innovative theatrical productions such as The Father by Florian Zeller, bestselling novels such as Emma Healey’s Elizabeth is Missing, have all contributed to a steady growth in global awareness and attitude, reflecting a change in public mood.