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.
Under the Equality Act and the Disability Discrimination Act, people with dementia have a legal right to be protected from discrimination:
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 firstname.lastname@example.org.