Understanding Young Onset Dementia

There is a common misconception that dementia is a condition that only affects older people.

However, around 40, 000 people in the UK are living with a diagnosis of young onset dementia which is the onset of a form of dementia before the age of 65 years. The actual figure is probably higher, because dementia is difficult to diagnose in younger people. Although rare, dementia can occur in people during their thirties.

The reality for many people who are affected by young onset dementia is a long road to diagnosis and the process usually takes longer than it does for an older person. This delay in diagnosis is largely due to two main factors:

  • First, the stereotypical association of dementia with old age means that doctors are less likely to diagnose the condition in younger people.
  • Second, there is a wider range of causes of young onset dementia, including rarer diseases that are characterised by behavioural symptoms and personality changes rather than the more typical symptom of memory decline.

Together these complex factors result in frequent misdiagnoses of dementia in younger people with stress, depression, burnout and the menopause being the most common. In addition, the relatively low awareness of young onset dementia among the general public means that unless individuals have had family experience of the condition, they may fail to recognise the early signs and symptoms.

Individuals who have been diagnosed with young onset dementia have often described the point of diagnosis as a ‘real sledgehammer moment’ which hits them in what they refer to as ‘the prime of life’. This can be a period of life during which the levels of roles and responsibilities that a person has reaches a peak compared to other life stages. People may be on the point of mastering their career. They could be simultaneously playing the roles of parent and child, with financial and emotional responsibilities related to dependent children and/or elderly parents. They are likely to play the role of spouse or partner which comes with its own set of emotional challenges. Adding to these pressures are the financial commitments of a mortgage, general living and the need to remain in employment and fulfil whichever demands that vocation dictates. Due to these circumstances, the impact of young onset dementia results in different needs and type of support compared to the older population.

Finding appropriate support for young onset dementia does remain challenging. Statutory services for young onset dementia providing individuals with ongoing assessment and support at home and in day care settings are limited and patchy across the UK and the services that these organisations provide are variable. Generally, services for dementia are often specifically designed for older adults but support can sometimes be provided by non-statutory organisations in the form of day care or one-to-one support, for example from Age UK or the Alzheimer’s Society. Memory assessment clinics can signpost individuals who have just been diagnosed to such organisations that provide age – appropriate support, particularly if the clinic has a dementia advisor.

Dementia Carers Count event. Swindon. United Kingdom.

Here at Dementia Carers Count we provide tailored support to carers of individuals with young onset dementia in the form of three-day residential courses around understanding dementia and developing carer resilience that are specifically targeted to this age group. These courses also provide an opportunity for younger carers to meet others in similar situations. This is really important because the rarer incidence of young onset dementia means that carers do not often have many opportunities to meet others and benefit from peer support. Sometimes carers who have attended our courses decide to maintain and further develop this peer support, by creating a network once the course has finished, for example using a closed Facebook or WhatsApp group.

Our next course for those supporting someone with young onset dementia is in March 2019.

 

Luisa Rabanal,

Dementia Carers Service Practitioner

Dementia Carers Count