The need for change

Although younger people experience similar symptoms to older people with dementia, the impact on their lives is significantly different. 

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.

And yet, younger people face huge delays and challenges in diagnosis – it takes on average 4.4 years to receive a diagnosis, twice as long as older people – and they are often misdiagnosed with depression, anxiety, stress, marital issues, menopause or personality disorder.  Once diagnosed, they are under-served by support services and signposting and have to face limited understanding and awareness of the condition in the wider world.

Why we feel there is an urgent need for change

• The low rates of diagnosis of young onset dementia deprive people of clinical treatment and the ability to both live fully in the present and plan for their future while they are still able
• Very wide variability exists in access to specialist expertise in assessing young onset dementia and determining its causes, including access to diagnostic tests and genetic testing
• There is inadequate recording of disease subtypes and inconsistent case reporting which has led to a significant understatement of prevalence levels
• This had led in turn to poor levels of age-appropriate support both clinically and within the community, and so subjecting younger people with dementia to a form of age discrimination and unequal treatment in society
• Covid-19 has exacerbated these challenges.  The poor level of provision after diagnosis has worsened with young onset services reducing, or disappearing completely

Insufficient awareness and understanding of young onset dementia; the lack of timely, appropriate support, information and advice and inadequate access to a range of expertise from pre-diagnosis throughout the progression of dementia leaves people affected with multiple challenges to adapting and living fully.

The Young Dementia Network and its members are working hard to change this.