Top 10 tips to tackle dementia discrimination and stigma

Stigma and discrimination are faced by people living with dementia on a daily basis for a number of reasons. This article highlights how you can help tackle dementia discrimination and prejudice, become a dementia friend and adopt dementia friendly approaches.

What is stigma and discrimination?

Stigma is a negative or unfair belief based on a stereotype about a person, such as their age, race, religion, gender or disability, for example, believing that someone has dementia cannot live independently. 

Discrimination is unfair treatment as a result of a negative stereotype e.g. not letting someone with dementia do anything for themselves.     

What are the signs of stigma and discrimination against dementia?

There are a number of ways in which a person with dementia can be stigmatised and discriminated against.

It is important to dispel dementia myths and stereotypes. 

Someone with dementia could be:    

• Assumed to be less intelligent and treated as such.
• Assumed to behave in a certain way.  
• Assumed to be incapable of doing things and not allowed to do things for themselves because it is assumed to be too risky. 
• Treated differently.
• Treated as if they are a burden.
• Described with negative words e.g. ‘suffering’.     
• Treated as if their future is bleak and they cannot have a good quality of life.
• People might not let someone do what they usually do for fear it is too big a risk and may make the person feel suffocated due to wanting to keep them safe.

How can you help tackle dementia discrimination and stigma?

1.     Remember the individual is not defined by their condition

Remember that people living with dementia remain individuals with needs and feelings. Dementia does not change that. It is possible for a person to live well with dementia and maintain their quality of life for as long as possible.

People with dementia:   

• Need to feel valued and respected.
• May be concerned about how the disease will affect them.
• Need companionship.
• Want to maintain an active and independent life.
• Have the same needs as anybody else.
• Have abilities, skills and aspirations.

2. Find out the facts about dementia

Learn as much as possible about dementia and its gradual changes. You can read more about dementia and symptoms and the different types of dementia and the subtle signs of dementia.

Finding out about dementia prepares you for the changes you may see in others and helps you be sensitive to their needs. Get the latest news about dementia and listen to the real-life experiences of people who live well with the condition.

It is important to know the realities of dementia and the stigma surrounding it. Listen to the people with dementia who have experienced stigma and discrimination e.g. read about Tommy’s experience of dementia and the discrimination he faced. Let those who live with dementia help you understand what it’s like to face stigma and  discrimination.

3. Check and adapt your attitude

Dementia is a progressive disease and affects each person differently. It is also a serious and life-changing illness. It is important not to spread misinformation and stereotypes about dementia. Under the Equality Act and the Disability Discrimination Act, people with dementia have a legal right to be protected from discrimination at work, in education, as a consumer, when using public services, when buying/renting property, as a member/guest of an association.   

If a colleague at work tells you they have dementia, ask them how best you can work with them. Don’t find ways to exclude the person from meetings or tasks for fear they won’t be able to contribute. Do not avoid the subject. Don’t start excluding them in social activities for fear of what they might say or do.     

4. Don’t make assumptions

Dementia is a progressive disease and affects each person differently. A diagnosis does not mean the person has to stop their daily routine or give up working right away.

Don’t assume they’ll stop working very shortly or that they are in the latter stages of dementia. Don’t assume someone is too young to have dementia. Most people think memory loss is the only sign of dementia. Changes in personality and behaviour can also indicate the onset of the condition.

People with dementia can live meaningful and productive lives for many years after an early diagnosis.

5. Use appropriate language

Avoid using negative words when describing dementia, symptoms or people with dementia.  

Don’t make people living with dementia feel down by making dementia jokes at their expense.

Using appropriate language can help you focus on upholding the dignity of the person when talking about dementia.  According to the Alzheimer’s Society preferred terms include ‘person with dementia’, ‘person living with dementia’, ‘dementia as a condition’, ‘a person with a diagnosis of dementia’, ‘young onset dementia’, ‘person with dementia or the name of the specific type of dementia’.

Avoid using inappropriate terms such as ‘senile dementia’, ‘sufferer’, ‘victim’ or ‘burden’.

6. Become a dementia friend to understand how to be dementia-friendly

You can learn about dementia-friendly practices by becoming a dementia friend.  

Dementia Friends is an Alzheimer’s Society initiative. A Dementia Friend is somebody that learns about dementia so they can help their community.

The Alzheimer’s Society defines a dementia friendly community as: “A city, town or village where people with dementia are understood, respected and supported, and confident they can contribute to community life. In a dementia friendly community people will be aware of and understand dementia, and people with dementia will feel included and involved, and have choice and control over their day-to-day lives”.

Erik, who decided to become a Dementia Friend, said: “I’ve gained a deeper understanding of the challenges that individuals living with dementia and their families face daily. Navigating the health and social care system, coping with the societal stigma, and handling the practicalities of everyday life can be daunting tasks. This has taught me the importance of patience, empathy, and understanding.

“My time as a Dementia Friend has highlighted the power of community in creating a dementia-friendly society. It’s not solely the responsibility of healthcare professionals; everyone can make a difference, from neighbours to local businesses. Small actions, like being patient in a shop queue or providing clear directions, can have a significant positive impact.”

To become a dementia friend click here 

7. Challenge negative stereotypes and bust myths about dementia

When you have the facts about dementia you can share your knowledge with others. Talking about dementia lessens people’s fear and increases understanding.

If you hear something about dementia that is false or misleading (see dementia myths and stereotypes highlighted above) then challenge it. Sharing people’s first-hand experiences of dementia can also increase other people’s awareness of dementia.

8. Stay in touch

People living with dementia don’t want to lose their friends, especially as the condition progresses. 

A strong social network will help them remain independent longer and may slow the progression of the condition. Stay in touch and connected. Social activity lets someone with dementia know you care.

9. Involve them. Highlight what the person can do, not what they can’t

Although some symptoms of dementia are common to everyone, dementia affects each person differently.

It is important for people with dementia to feel they can still contribute and continue doing what they enjoy. People with dementia do not want to stop doing the activities they enjoy.

Focus on the activities the person can still do instead on those that become difficult as a result of the disease You can involve people with dementia in things they like doing.  

10. Be supportive

If you are worried about someone with dementia, ask if they are okay and whether they need help. If that doesn’t work, try talking to a family member about your concerns.

Ask how you can be supportive. Ask if the person is comfortable talking about their diagnosis.

Don’t tell someone there is nothing to worry about – this will only show them you don’t understand because it is natural for people to have fears and concerns.

Allow them to discuss their feelings openly and honestly. This makes the person feel supported and helps families make care decisions together.

Communication should include the person with dementia. For example, someone with dementia should have their wishes respected and be involved in their healthcare, legal and financial matters while they are still able to make decisions.

Do not forget that family carers also need support. Learn more about the realities of day to day caring for someone with dementia. If you know someone who is caring for a person with dementia, show understanding and offer help.

What causes stigma and discrimination against someone with dementia?

• Ignorance and lack of understanding about dementia. People may blame a person with dementia for the way they are acting and not understand it is dementia that is causing them to act differently. They may be seen as being uncooperative, unreliable, difficult, unpredictable, less communicative, stubborn, rude etc.   
• People only seeing the condition and not the individual.
• Negative representations/stereotypes of people with dementia by society and the media.
• Fear about how a person with dementia will behave and fear of doing or saying the wrong thing to someone with dementia.

How might stigma and discrimination affect someone with dementia?

• A person with dementia symptoms may avoid getting help and a dementia diagnosis because they are afraid of how they might be treated if people know they have dementia. This can lead to delays in getting assessed and diagnosed and as a result getting the support needed.     
• They may not seek help for other treatable conditions with similar symptoms e.g. mental health issues and stress, because they are afraid of being diagnosed with dementia.
• Self-stigma and introspective discrimination. They may view themselves negatively.
• They may feel ashamed of having the condition.
• Reclusive and withdrawn – They may withdraw from socialising and usual activities. Loneliness and isolation due to being afraid to socialise and do what they usually do.
• Loss of confidence.  
• Depression, stress and other mental health issues.

Wendy Mitchell was diagnosed with early onset dementia at the age of 58.

Wendy Mitchell said in the Let’s Talk About Care podcast: “I have found that many of my friends who have dementia gave up their jobs without even telling their employers because of the stigma.

“Post diagnosis, I was so shocked by the lack of awareness, both in the community and the clinical world, that I now spend all my time travelling around the country raising awareness, encouraging others to speak out in order to reduce the stigma associated with dementia and to share my passion for research”.

The good news is that by following these 10 top tips you can give a person with dementia the support and confidence to live well for as long as possible.