Myth-Busting Common Misconceptions on Dementia

By Jugo O’Neill, Volunteer Writer

According to the World Alzheimer Report 2024, 88% of people living with dementia reported experiencing discrimination, an increase from 83% in 2019. Stigma refers to negative attitudes and false beliefs associated with particular attributes and/or characteristics of a group of people, and discrimination is the harmful behaviour that results from these attitudes and beliefs. In other words, stigma is the thought, and discrimination is the action that follows. Stigma and discrimination towards people living with dementia often result from a lack of understanding about the condition.

Common misconceptions about dementia

One common misconception about dementia relates to age. Around 80% of the general public believe dementia is a normal part of ageing, according to the World Alzheimer Report 2024 – a dramatic increase compared to 66% in 2019. Worryingly, 65% of healthcare professionals also incorrectly believe dementia is a normal part of ageing. However, while age is a major risk factor, dementia is not an unavoidable consequence of growing older, and many older people live without dementia.

Dementia also does not only affect older people. There are many cases, though rare, of young-onset dementia and childhood dementia. Young-onset dementia, sometimes called early-onset dementia, refers to a person developing dementia before the age of 65. Over 70,800 people in the UK are estimated to be living with young-onset dementia. Alzheimer’s Society and Dementia UK both highlight the particular challenges and support needs of younger people with dementia.

Another misconception is that dementia is simply caused by an unhealthy lifestyle. Over 58% of the general public believe dementia is caused by an unhealthy lifestyle, according to the World Alzheimer Report 2024. While “environmental” factors associated with an unhealthy lifestyle (such as smoking, physical inactivity, poor diet, high blood pressure, excessive alcohol consumption, etc.) are linked to a higher risk of developing dementia, dementia is not an inevitable consequence of an unhealthy lifestyle.

What dementia is – and what it isn’t

It is important to remember that “dementia” is a term used to describe the symptoms that occur when there is a decline in brain function. It is not a single disease. There are different diseases which can cause dementia, and many of these are associated with an abnormal build-up of proteins in the brain.

This is similar for younger and older people, but there are important differences in how dementia can affect younger people. For example, younger people with dementia, compared to older people, are less likely to have memory loss as one of their first symptoms. Many younger people with dementia also do not tend to have any other serious long-term health conditions, and they are much more likely to have a rarer form of dementia, such as frontotemporal dementia (FTD). Young-onset dementia is also more likely to be inherited – this affects around one in ten younger people with dementia.

Stigma, discrimination and younger people

Those with young-onset dementia and childhood dementia can face significant stigma and discrimination. Though memory loss is often less of an issue in young-onset dementia, the person may have other difficulties that can make people view them less favourably. This can include difficulties with speech and language, problem-solving and decision-making, concentration, or changes in personality and mood.

Unfortunately, even amongst healthcare professionals, there can still be ableist attitudes – for example, the incorrect assumption that disabilities only affect older people, and therefore that younger people cannot be disabled. This can result in people not realising that changes in behaviour are linked to dementia, and instead seeing the person living with dementia as ‘difficult’, ‘unpredictable’ or ‘unreliable’.

Blame, misunderstanding and self-stigma

Another common misconception about dementia relates to people not realising that certain changes are due to the person’s dementia and blaming them for the way they are behaving. For example, if the person living with dementia has communication difficulties that make it hard for them to understand and follow instructions, other people may think they are being uncooperative or purposefully difficult, and become frustrated with them. Or they may find personal care difficult, which can lead to family members feeling embarrassed to be seen with them in public.

Sometimes, people living with dementia can also turn stigma and discrimination inward. For example, they might think they are ‘stupid’ or ‘a burden’ because of their diagnosis and its symptoms. This is called self-stigma.

Stigma and discrimination in minority ethnic communities

Stigma and discrimination around dementia can be a particular issue for people from minority ethnic communities. This might result from:

• language barriers
• a lack of understanding about dementia, or the belief that it is an inevitable part of ageing, leading people not to seek help
• traditional myths and taboos, such as the belief that dementia is caused by evil spirits
• cultural beliefs about caring, such as a strong sense of duty to care for family members without external support
• a lack of culturally appropriate support.

Impact of stigma and discrimination

Exposure to stigma and discrimination can lead to serious mental and physical health problems by causing the individual to internalise negative assumptions and beliefs. This can contribute to low self-esteem and lack of confidence, shame, hopelessness and avoidance of help. These effects can perpetuate a cycle of illness and disadvantage, often leading to social isolation and reduced access to necessary support and opportunities.

The consequences of stigma and discrimination for people living with dementia can include:

• decreased motivation
• negative effects on their roles and relationships with family and friends
• friends and family members avoiding contact with them
• healthcare professionals, family, friends or strangers talking over or about them rather than to them
• healthcare professionals and others holding a negative opinion about them, their quality of life or their ability to make decisions
• reduced access to certain beneficial services, such as talking therapies, rehabilitation or interest groups.

People living with dementia may be reluctant to seek a diagnosis because they are afraid of how they might be treated once they are diagnosed. This can lead to delays in getting assessed and diagnosed, sometimes for years – time in which they could have received treatment and support. People living with dementia and their family members may also feel ashamed of the diagnosis because of the potential for stigma and discrimination. This may result in them withdrawing from socialising and their usual activities, which can contribute to loneliness and isolation.

It may also mean that they do not seek help for other treatable conditions that have similar symptoms, such as infections or mental health issues, because they are afraid they will be diagnosed with dementia.

Family dynamics, overprotection and independence

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

There is also the concern of enmeshment – a psychological term describing an unhealthy and overly close relationship where emotional boundaries are blurred, leading to a lack of autonomy, development and identity. For example, some family members and friends may become overprotective of the person living with dementia, believing that activities they can still do may now be too risky to their health, and becoming excessively involved in their care and decision-making.

While a certain level of protectiveness is normal, it is important to have boundaries. Evidence suggests that continuing to be as independent as possible and doing the things they enjoy is beneficial for a person’s health and wellbeing.

Is dementia a disability?

In the UK, dementia is generally recognised as a disability because it usually has a substantial and long-term impact on a person’s ability to carry out everyday activities. Under the Equality Act 2010, it is illegal to discriminate against someone because of a disability – and this includes dementia.

Tips on preventing and managing stigma and discrimination

• Try to focus on what the person living with dementia can do rather than what they cannot.
• Encourage and support the person living with dementia to tell family and friends about their diagnosis (with their permission) to avoid speculation about what is “wrong” with them.
• Encourage and support the person living with dementia to continue talking to family and friends as the dementia progresses, to help others understand changes in their behaviour.
• Encourage and support the person living with dementia to maintain their independence as far as possible. Evidence suggests that continuing to be as independent as possible is beneficial for health and wellbeing.
• Support and encourage the person living with dementia to continue with their usual activities, with adaptations if necessary. Evidence suggests that continuing to do the things they enjoy is beneficial for their health and wellbeing.
• If the person living with dementia still works, encourage and support them to tell their employer about their diagnosis so that reasonable adjustments can be made to allow them to continue in their role. It is illegal to discriminate against someone because of a disability, and this includes dementia.
• Do not avoid social or public situations. If people living with dementia are “hidden away”, it can increase the stigma and discrimination around the condition.
• Try to avoid being overprotective and maintain clear boundaries. For example, if the person living with dementia enjoys walking but you are afraid of them getting lost or hurt, you could arrange for a friend to go with them.
• If decisions need to be made, try to involve the person living with dementia as much as possible.
• Look for ways to respond to stigma and discrimination. For example, using humour to de-escalate tense situations or having some stock phrases ready to respond to unpleasant questions and comments.
• If the person living with dementia is from a minority ethnic background and is experiencing stigma and discrimination from within the community, consider asking a community or faith leader to speak to family and friends. Sometimes people are more willing to listen to someone who has status.
• Compile a life story of the person living with dementia – a record of their life that can be shared with family members, friends and healthcare professionals to help them understand more about the person.
• Encourage and support the person living with dementia to carry a form of identification to show members of the public that they may need support, such as an ID card or a sunflower lanyard.
• Get involved in campaign groups that raise awareness of dementia and help to challenge stigma and stereotypes.
• Encourage and support the person living with dementia to join support groups to share experiences with other people in similar situations. Support groups may also be helpful to family and friends.

Sources of support

Helplines

• Alzheimer’s Society Dementia Support Line (0333 150 3456) – Find out more
• UK Admiral Nurse Dementia Helpline (0800 888 6678) – Find out more

Dementia UK resources

• Young onset dementia
• Database of young onset dementia support groups
• Changing relationships and roles
• Coping with distress
• Employment and dementia
• The emotional impact of a dementia diagnosis
• Managing anxiety and depression
• 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
• Hidden Disabilities Sunflower scheme
• Young Dementia Network