Learning that you have dementia is usually a big shock, and it can leave you feeling very upset and afraid – fearful of losing your independence and even your identity.
If you are feeling worried, anxious or confused, and want to find out more about dementia and how it may affect you, you can get help, advice and information from a variety of organisations listed here.
Hope and encouragement
The image of a person with dementia that most of us have in our mind’s eye is of someone who has completely lost touch with reality, and is completely helpless and dependent on others. Sadly, this may be the case for some people at an advanced stage of dementia. But dementia does not happen overnight, and more and more people with dementia are finding that there is life after diagnosis. You do not suddenly lose all your abilities in one go, and life can go on being interesting and fulfilling for years after dementia is first detected, if you stay healthy, active and connected to other people. This is confirmed by the growing number of books and personal accounts written by people with dementia, and the talks they give on the radio and at conferences, describing how their lives have changed, how they have come to terms with their situation, and how they are still living life to the full.
You can listen to some people with dementia talking about their lives and experiences (and, if you feel like it, share your own thoughts) on the Dementia Diaries website.
More and more groups are springing up round the country, where people with dementia get together to make a difference, for example:
- to raise public awareness about dementia and challenge some of the negative stereotypes in the media and society
- to campaign in the local community for more dementia-friendly shops and transport
- to work with health and care providers to improve understanding of the varied needs of people with dementia, and achieve more appropriate and effective support
Belonging to a group like this can give people with dementia a strong sense of purpose, and make life feel worth living again.
Services and support for people with dementia are still very patchy around the country, and in many cases the needs of people with dementia and their carers are not being met. People with dementia are the experts in their condition, and can use their lived experience to contribute to service design and planning. Thus in many cases, people with dementia are at the forefront of campaigns to demand improvements – active participants insisting on change, rather than passive recipients of inadequate support. For example, people with dementia made a vital contribution to the Dementia Action Plan for Wales, published in November 2018.
The oldest established group in the UK run by and for people with dementia is the legendary Scottish Dementia Working Group, which was founded in 2002.
People with dementia in England, Wales and Northern Ireland have now created the Three Nations Dementia Working Group, supported by the Alzheimer’s Society.
Additionally, there are now more than 100 local groups run by and for people with dementia around the UK. They are supported and kept in touch with each other by DEEP – the Dementia Engagement and Empowerment Project, which is in turn supported by Innovations in Dementia. You can see if there is a group in your area here.