Dealing with stigma and discrimination against people affected by dementia

When someone is diagnosed with dementia, they may feel a sense of stigma or discrimination, with people treating them differently, or sometimes even badly.

Stigma is a negative or unfair belief based on a stereotype about a person – such as their age, race, religion, gender, sexual orientation or disability.

Discrimination is unfair treatment that results from the negative stereotype.

Healthcare professionals use labels like ‘dementia’ to classify people. It helps to guide their health and social care based on the typical symptoms.

However, when a person is labelled as having dementia, they’re at increased risk of experiencing stigma, stereotyping and discrimination.

This may happen because:

• they are defined by their diagnosis and no longer seen as an individual
• people make assumptions about what they are like based on their diagnosis
• people lack understanding of what a dementia diagnosis means and how it might affect the person
• people assume that dementia makes the person less capable or intelligent
• people are frightened about how the person might behave
• the media creates negative stereotypes about dementia – often through the use of language like ‘suffering’, ‘death sentence’ and ‘burden of care’, and negative portrayal of people with dementia

Sometimes, people with dementia feel stigma towards themselves – for example, they might think they are ‘stupid’ or ‘a burden’ due to their diagnosis. This is called self-stigma.

Negative stereotypes can have many consequences for a person with dementia, including:

• self-doubt, reduced self-esteem and lack of confidence
• decreased motivation
• negative effects on their roles and relationships with family and friends
• friends and family avoiding contact with them
• mental health issues, including anxiety and depression
• segregation, eg only being able to access specific groups and services for people with dementia, rather than continuing to attend other interest groups
• reduced access to certain useful services, such as talking therapies and rehabilitation
• professionals, family and friends or strangers talking over or about them
• professionals and others holding a negative opinion about their quality of life or ability to make decisions

A person with symptoms of dementia might be reluctant to seek a diagnosis because they are afraid of how they might be treated once they’re diagnosed.

This can lead to delays in getting assessed and diagnosed, sometimes for years – time in which they could have received treatment and support.

It may also mean that they don’t seek help for other treatable conditions that have similar symptoms – like certain infections, vitamin or hormone deficiencies, mental health issues and stress – because they are afraid they will be diagnosed with dementia.

Some people with dementia and their families feel ashamed of the diagnosis because of the potential for stigma and discrimination. They may end up withdrawing from socialising and their usual activities, which can contribute to loneliness and isolation.

Sometimes, family and friends behave differently towards the person with dementia. This may be due to fear, negative stereotypes, or worries about saying or doing the wrong thing.

For example, they may become overprotective of the person, believing that some things they can still do may now be too risky. However, there’s plenty of evidence to suggest otherwise – and that continuing to be as independent as possible and do the things they enjoy is beneficial for the person’s wellbeing.

Every person with dementia, as well as their family and friends, can play a part in managing and preventing stigma and discrimination.

Here are some examples of things that might help:

• Recognise and focus on your strengths and abilities, rather than what you find more difficult
• Continue with the activities and social contacts you enjoyed before diagnosis, adapting them to accommodate your situation if necessary
• Enjoy and celebrate small daily goals – like, “Today, I’ll go for a walk” – and don’t dwell on longer-term concerns. This will encourage positive thoughts and actions
• Find ways of responding to stereotypes and discrimination – for example, using humour to turn the situation around, or challenging the person who is treating you unfairly
• Encourage family and friends to talk about the diagnosis, ask questions and listen to how dementia is affecting you and how they can help
• Get involved in campaigns and groups that challenge dementia discrimination
• Join a support group to share experiences and coping strategies
• Challenge and speak up against stereotypes and discrimination whenever you see or experience them

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 eg transport
• when buying/renting property
• as a member/guest of a private club or association

Workplace discrimination can be a particular problem for people with young onset dementia (dementia in people aged 65 and under), who may be treated unfairly because of their diagnosis – eg denied promotion, put on probation or even dismissed/put under pressure to retire early.

If the person with dementia feels they have been discriminated against, they can:

• complain directly to the person/organisation
• appoint a mediator or advocate to help them resolve the problem
• pursue a claim in court or a tribunal

For more information about taking action against discrimination in general, you can contact the Equality Advisory Support Service.

For advice on discrimination at work, read our information on employment and dementia, or contact Acas – see Sources of support, below.

To talk to a dementia specialist Admiral Nurse about stigma and discrimination or any other aspect of dementia, contact our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday-Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.

If you would prefer to pre-book a phone or video appointment with an Admiral Nurse, please visit dementiauk.org/get-support/closer-to-home/.

Dementia UK information that you might find useful:

Employment and dementia
dementiauk.org/get-support/legal-and-financial-information/employment-and-young-onset-dementia/

Financial and legal sources of support
dementiauk.org/get-support/legal-and-financial-information/sources-of-support-and-advice/

The emotional impact of a dementia diagnosis
dementiauk.org/get-support/diagnosis-and-next-steps/emotional-impact-of-the-diagnosis/

Other useful resources:

Equality Advisory Support Service (EASS)
gov.uk/equality-advisory-support-service

Disability Rights UK
disabilityrightsuk.org

Acas
Impartial advice on workers’ rights
acas.org.uk

Citizens Advice
citizensadvice.org.uk