Living with young onset dementia

This video introduces Ian Grant and Sandy Reed, who were both diagnosed with dementia in their 50’s. They describe their experiences of receiving such a diagnosis at an early age, and the lack of support that often follows. They are both now supported by the Forget Me Not Centre, which provides counselling and support to younger people with dementia and takes a reablement approach. This means that the support staff work alongside the individuals, help to break difficult tasks down into small steps, and encourage frequent practice until confidence in their abilities grows. The video also emphasises the importance of living life, taking risks and having new experiences, as well as the value of peer support.

Messages for practice

1. Diagnosis of dementia may be slower, more difficult and potentially more devastating for younger people.
2. It is often then followed by a lack of appropriate support and services.
3. Living life as a younger person with dementia means still engaging with the world, having the opportunity to take risks and having new experiences.
4. Access to support that builds confidence, helps restore independence, and enables peer support is crucial.
5. Personal budgets may offer younger people with dementia an opportunity to get the support that is right for them.
    

Who will find this useful?

Social workers; care staff providing community based services for people with dementia; NHS and social care commissioners; people with dementia and carers; the general public; GPs and other NHS staff; and regulators.

• Useful links Open

  Alzheimer’s Society
  The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including What is young-onset dementia (440), Explaining dementia to children and young people (515) and Rarer causes of dementia (442). It has also published a position statement on What is young-onset dementia?, maintains a database of services for younger people with dementia, and has a forum within its online community, Talking Point (for people with dementia and their carers), specifically for younger people with dementia.

  Rare Dementia Support
  Rare Dementia Support is a specialist support service for people living with or affected by one of five rare dementia diagnoses: familial Alzheimer’s disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy (PCA) and primary progressive aphasia (PPA). The service offers support group meetings, telephone contact networks, websites and access to information and advice and is based at the Dementia Research Centre at UCL’s Institute of Neurology. It was previously known as the Fronto-temporal Dementia Support Group.

  FTD talk
  The aim of this website from scientists at University College London is to make frontotemporal dementia (FTD) easy to understand for anyone with an interest in FTD. The site includes a dozen factsheets related to various aspects of FTD, available to download for free.

  YoungDementia UK
  This Oxford-based service offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. The YoungDementia UK website has information on young onset dementia.

  Younger people with dementia: living well with your diagnosis
  This resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017.

• Related pages from this section Open

  • Young onset dementia
    • Key issues
    • Diagnosis and early stages
    • Services and support for younger people
    • Living with young onset dementia
    • Living with young onset dementia (video)