Guide for journalists

The media frequently portrays people with dementia in a stereotypical fashion.  Use of language such as 'sufferer', 'patient' and 'victim' is all too common, which intensifies the stigma of those with dementia.  

We have compiled some facts and figures for journalists and those with an interest in young onset dementia.  We have also included guidance around what YoungDementia UK considers to be acceptable terminology and preferred language when writing about young people with dementia. We hope you will find it informative and useful. 

About young onset dementia

  • Dementia is ‘young onset’ when it affects people of working age, usually between 30 and 65 years old.  It is also referred to as ‘early onset’ or ‘working-age’ dementia.
  • Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember.  Their personality, behaviour and mood can also be affected.  Everyone's experience of dementia is unique and the progression of the condition varies.  Some symptoms are more likely to occur with certain types of dementia.

Prevalence of young onset dementia in the UK

  • It is estimated that there are 42,325 people in the UK who have been diagnosed with young onset dementia.  (Ref Dementia UK, 2nd edition 2014, Alzheimer’s Society).  They represent around 5% of the 850,000 people with dementia.  For the overview report click here.
     
  • The actual figure could be higher because of the difficulties of diagnosing the condition and might be closer to 6-9% of all people with dementia.  Awareness amongst GPs is still relatively low and when people are still at work, symptoms are often attributed to stress or depression. 
     
  • Dementias that affect younger people can be rare and difficult to recognise.  People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.
     
  • People with young onset dementia are more likely to be diagnosed with rarer forms of dementia and are more likely to have a genetically inherited form of the disease. 
     
  • Prevalence rates for young onset dementia in black and minority ethnic groups are higher than for the population as a whole.  People from BAME backgrounds are less likely to receive a diagnosis or support.
     
  • People with a learning disability are at greater risk of developing dementia at a younger age.  Studies have shown that one in ten people with a learning disability develop young onset Alzheimer's disease between the age of 50 to 65. The number of people with Down's syndrome who develop Alzheimer's disease is even greater with one in 50 developing the condition aged 30-39, one in ten aged 40-49 and one in three people with Down's syndrome will have Alzheimer's in their 50s.

Common types of dementia in younger people

  • Alzheimer's disease is the most common form of dementia in younger people, accounting for around a third of young people with dementia.
  • Vascular dementia is the second most common form of dementia in young people.  Around 20% of young people with dementia have vascular dementia.
  • Around 12% of young people with dementia have frontotemporal dementia.  It most commonly occurs between the ages of 45-65.  In about 40% of cases there is a family history of the condtion.
  • Korsakoff's syndrome - around 10% of dementias in young people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse.
  • Around 10% of young people with dementia have dementia with Lewy bodies.
  • Around 20% of young people with dementia have a 'rarer' form of the condition.  Examples include conditions that can lead to dementia including Parkinson's disease, Huntington's disease and Creutzfeld Jakob disease.

Our name

The name of our charity is YoungDementia UK.  There is no space between the first two words.  It should not be referred to as ‘Young Dementia.’  

The impact of dementia for younger people and their families 

  • Although younger people experience similar symptoms to older people with dementia, the impact on their lives is much greater.  Younger people are more likely to still be working when they are diagnosed.  Many will have significant financial commitments such as a mortgage.  They often have children to care for and dependent parents too. 
  • Their lives tend to be more active and they have hopes, dreams and ambitions to fulfil up to and beyond their retirement.

The importance of language

  • The language used to talk about younger people with dementia can strongly influence how others treat or view them, and how they feel about themselves.
  • For example, referring to people with dementia as ‘sufferers’ or as ‘victims’ implies that they are helpless.  This not only strips people of their dignity and self-esteem, it reinforces inaccurate stereotypes and heightens the fear and stigma surrounding dementia.
  • We feel it is important to convey that young onset dementia is not necessarily the defining aspect of a person’s identity.  Life does not stop when dementia starts.
  • Using the correct terms avoids confusion.  There are many forms of dementia.  Alzheimer’s disease is just one of them and the terms are not interchangeable.  

Words to use, and to avoid

Use

Avoid

Reason

Young onset dementia or working-age dementia Early onset dementia

This can be confused with the early stages of dementia 

Person / someone with dementia

Sufferer, victim, patient

These terms imply helplessness.  All of us are patients at some time if we have a GP.  This doesn’t define us and it doesn’t define someone with young onset dementia

Wife, husband, partner, family member Care-giver, carer Only use ‘carer’ if the person defines themselves as such
 
Member of YoungDementia UK Service-user, client

The people we support are part of a community and not ‘customers’

Devastating
Painful
Distressing
Debilitating
Challenging
Life-changing
Stressful

Hopeless
Unbearable
Impossible
Tragic

It is important to be realistic about the impact of young onset dementia while not being overly pessimistic or frightening.  Language should reflect the person’s experience of dementia at that time

Impact of supporting someone with young onset dementia Burden of caring

While supporting someone can be challenging, experiences vary and many people find a great deal of positivity in their relationship

Distressing or agitated behaviour Chellenging behaviour 

Dementia in younger people often involves symptoms other than memory loss.  It is important to make it clear that behaviours such as agitation, anxiety, disinhibition, aggression and paranoia are due to the condition and / or frustration 

Breaks Respite Younger people may take breaks and even round the world trips with their partner or family for many years.  ‘Respite’  usually describes a break for a carer and should preferably be used only if the person themselves refers to their free time as such

 

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