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Spotlight on Young Onset Dementia for World Alzheimer’s Day

Posted by Devon Partnership Trust in #ProudofDPT, Mental health on 21st September, 2020

World Alzheimer's day takes place every 21 September. This important day forms part of an international campaign, together with Alzheimer's Awareness Month also in September, which aims to raise awareness and challenge the stigma that surrounds Alzheimer related dementia.

To mark this day, Sonya, Young Onset Dementia Practitioner, Bristol Dementia Wellbeing Service, has written about Young Onset Dementia (YOD), the challenges she has faced supporting those with YOD and the work the Bristol Dementia Wellbeing Service are doing to help those who suffer from Young Onset Dementia. Sonya says: 

“Dementia is a neurodegenerative condition which does not solely affect older people. Channel 4’s “The Restaurants that Makes Mistakes” and the BBC’s “Our Dementia Choir” have highlighted that younger people do develop dementia. You can be in your 30’s, employed, married, and have young children and be living with a dementia diagnosis.

"Young Onset Dementia (YOD) is defined when an individual’s symptoms of dementia are acknowledged to have commenced before the age of 65. The current 65 year old cut-off corresponds to the age which people used to retire and does not have a link to any biological consequence.

"The prevalence of YOD continues to remain unclear. An Alzheimer’s Society report in 2014 estimated that over 40,000 people in the UK had been diagnosed with YOD, which is approximately 5% of those diagnosed with a dementia. With an ever-ageing population and improved diagnostic testing, these figures are likely to have increased. The number is also likely to be higher when taking into consideration that many people do not present themselves at their GP during the early stages, alongside a general lack of GP awareness, a high misdiagnosis rate of a mental health condition, relationship difficulties and even the menopause.

"Being diagnosed with YOD comes with age-related challenges, which are often different to, or more complex than those encountered in the older population living with dementia e.g. employment, relationships, finances, family responsibilities (partner, parent, children and grandchildren), entitlements in the benefit system and housing.

"As a dementia practitioner with a special interest in YOD, over time I developed an awareness of the challenges and implications of supporting service users with YOD and their carers within services which primarily focus on the needs of people living with dementia over the age of 65. All too frequently issues regularly encountered by those of a younger age are overshadowed through a nationwide lack of dedicated YOD services.

"To respond to these unique needs, the Bristol Dementia Wellbeing Service created a citywide Young Onset Practitioner post, and having been successfully appointed to this, I can now further expand on my existing knowledge and expertise.

"At present, my role includes the following core elements:

  • Individual casework: New referrals for those under 65 including diagnostic assessment (via complex triage meeting) and service users under 65 on current team caseload, with identified YOD specific needs.
  • External focus: Relationship building and networking with employment services, welfare rights services, Age UK, and adult secondary care services etc., providing education and awareness raising.
  • Internal focus: Assisting in the development of a service pathway and resources to address the needs of YOD and their supporters, alongside internal training opportunities. Supporting colleagues to ensure we are always asking if service users under 65 have any YOD specific issues with joint working encouraged to develop ongoing awareness of YOD needs. Facilitating a monthly YOD support network which meets at a local café/bar.

"To date, I am most proud of the links I have developed with the local Mental Health Vocational Service. Working alongside another specialist service to assist job retention (including provision of employer support) or to support the decision to cease employment prior to state pensionable age.

"As an example of my work, currently I am supporting a person with YOD to continue in paid employment, providing support and guidance to the service user, their family and the employer which can include promoting and enabling the use of “reasonable adjustments” as per the Equality Act (2010). Through this work we have been able to support this person to continue to live well with dementia at a young age and reinforce the message that you do not have to stop work because you have been diagnosed with dementia and that you can continue to have a fulfilled life with purpose and meaning.

"There is so much more I would love to share about my role and working with people with YOD. However, if you would like to know more about YOD, I encourage you all to look at the Young Dementia UK website:

"It is an excellent resource that covers the facets of YOD in one place. It also provides a link to the Young Dementia Network, a group which is leading on raising the YOD agenda nationwide through promoting research and strategies and developing guidance pathways for individuals, memory services and GP’s.”