Our Advice on Employment and Young Onset Dementia

January 21, 2019
Duffy from TV show Casualty

In light of Casualty’s nurse ‘Duffy’ receiving a diagnosis of dementia at the age of 57, we have put together some practical advice on employment and young onset dementia.

People are said to have young onset dementia if symptoms start before the age of 65. It is estimated that there are 44,000 people in the UK who have been diagnosed with young onset dementia (Ref NHS England 2017).

Advice on employment and young onset dementia:

Dementia is classified as a disability in the Equality Act 2010. Anyone diagnosed with dementia who is still in employment should tell their employer who should then refer them to the Occupational Health service for specialist advice and support. They will then devise an employment action plan based on capabilities and needs with reasonable adjustments  including:

  • Simplifying work routines
  • A quieter work space with fewer distractions
  • Regular breaks
  • Assistive technology (e.g. electronic alerts and reminders)
  • Buddy scheme and support sessions
  • Hours of work

Suggestions of alternative occupations and activities for younger people with dementia:

  • Part time employment either in the same organisation or an alternative one that uses the person’s knowledge and skills
  • Volunteering
  • Hobbies or creative activities (e.g. art, photography, sports, pottery)
  • Further study or classes
  • Social media
  • Campaigning
  • Research
  • Walking groups
  • Singing and music
  • Travel and exploring

Dr. Hilda Hayo, CEO and Chief Admiral Nurse at Dementia UK, said: “Young onset dementia is often diagnosed after the person has had the symptoms for four to five years. This can be due to lack of recognition of the symptoms of young onset dementia which differ from late onset dementia, and which may include progressive changes in: personality, cognitive ability, social functioning, communication, mood or behaviour.

“Being diagnosed with dementia under the age of 65 brings with it a range of complexities. A younger person with dementia is more likely than an older person to face a significant delay in an accurate diagnosis, be in employment, and have heavy financial commitments (e.g. mortgage, dependent children). Losing their employment after a diagnosis of dementia can increase the family’s distress and lead to financial strain, especially if the partner has to reduce their hours of employment. The emotional and financial stress can be huge and therefore requires specialist and unique support.”

Anyone who has any questions or concerns about employment and young onset dementia can contact our Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.

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