Dealing with stigma and discrimination of dementia

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, for example, “People with dementia cannot live independently.”

Discrimination is unfair treatment that results from the negative stereotype, for example, the person’s performance at work may be called into question.

For instance, if there are communication difficulties that make it difficult for the person to follow instructions, other people may think they are being uncooperative and become frustrated with them.

Or they might be finding personal care difficult, leading to family members being embarrassed to be seen with them in public.

Other causes of stigma and discrimination against people with dementia include:

• them being defined by their diagnosis and no longer seen as an individual
• people making assumptions about what they are like based on their diagnosis
• people assuming that dementia makes the person less capable or intelligent
• fear about how the person might behave
• stereotypes created by the media – 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.

In the early stages, memory loss is often less of a problem, but the person may have other difficulties that make people see them less favourably, for example:

• problems with speech and language
• difficulties with problem-solving and decision-making
• changes in personality and mood
• difficulty concentrating

In addition, many people assume dementia does not affect younger people, so they may not realise that the changes in behaviour are linked to dementia and think the person is being ‘difficult’, ‘unreliable’ or ‘unpredictable’.

For example, if the person shows reduced empathy and unstable emotions, their family might believe that they are being unkind or unfair, particularly if this affects their behaviour with their children.

• lack of understanding about dementia
• traditional myths and taboos, eg that dementia is caused by evil spirits
• dementia being seen as an inevitable part of ageing, so people do not seek help
• cultural beliefs about caring, eg a sense of duty to care for family members without support
• language barriers
• a lack of culturally appropriate support

• 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

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.

• Encourage the person with dementia to tell family and friends about their diagnosis to avoid speculation about what is ‘wrong’ with them
• Keep talking to family and friends as dementia progresses to help them understand changes in the person’s behaviour
• If the person works, support them to tell their employer about the diagnosis so adjustments can be made to allow them to continue in their role – it is illegal to discriminate against someone because of a disability, which includes dementia
• Focus on what the person can do, rather than what they cannot
• Support them to continue with their usual activities, with adaptations if necessary
• Encourage them to maintain their independence as far as possible, and avoid being overprotective – for example, if they enjoy cycling but you are afraid of them getting lost, you could arrange for a friend to go with them
• Look for ways to respond to stigma and discrimination, for example using humour to de-escalate tense situations or having some stock phrases to respond to unpleasant comments
• Do not avoid social or public situations: if people with dementia are ‘hidden away’, it can increase stigma around the condition
• If decisions need to be made, involve the person with dementia as much as possible
• If the person is from an minority ethnic background and is experiencing stigma from within the community, consider asking a community or faith leader (eg an imam or rabbi) to speak to their family and friends – sometimes people are more willing to listen to someone who has status
• Get involved in campaign groups that raise awareness of dementia and help to challenge stereotypes
• Encourage the person to carry a form of identification to show members of the public that they may need support, eg an ID card or a sunflower lanyard
• Work together to compile a life story – a record of their life that can be shared with family, friends and health and social care professionals to help them understand more about the person
• Join support groups to share experiences with other people in similar situations

• 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.

Dementia UK resources

• Young onset dementia
• Changing relationships and roles
• Coping with distress
• Creating a life story
• The emotional impact of a dementia diagnosis
• Employment and dementia
• Managing anxiety and depression
• Personal hygiene
• Database of young onset dementia support groups
• Dementia UK Campaigns Network

Other resources

• Acas – disability discrimination at work
• Citizens Advice
• DEEP: the UK Network of Dementia Voices
• Disability Rights UK
• The Equality Act 2010
• Equality Advisory Support Service
• Equality and Human Rights Commission
• Hidden Disabilities sunflower scheme
• tide: together in dementia everyday – dementia training courses and influencing groups
• Young Dementia Network – a network of people affected by and working in the field of young onset dementia