This report explores the experiences of people living with young onset dementia contacted by Dementia Pathfinders during a social care workforce training project in 2014 and 2015.
Summary of the key messaages from the report
People with young onset dementia struggle to find a diagnosis, and when they do receive one it is more often of a rarer condition. They and their families need specialist advice and support in learning how to understand and cope with the symptoms and live life to the full.
The severe emotional and psychological consequences of a diagnosis of young onset dementia require a range of effective sources of support. This includes specialist one to one counselling and advice, from those who understand young onset dementia, but also ideally a range of settings where people can meet others in their situation and gain mutual support.
Conventional day care and domiciliary services tend not to meet the needs of younger people with dementia. New models of support could be developed that are acceptable which would involve opportunities to be active and outdoors, pursuing interests and engaging in purposeful activities. They would encompass long enough periods of funded help to allow the family carer to continue with paid work if they so wish.
It is not unusual to live with young onset dementia for many years, meaning a large proportion of the carer’s life is shaped by their support role. Carers need long-term help to negotiate the stages of dementia, make decisions and maintain their own health and well-being. This may include support in finding full-time and end of life care. Help should not stop when the person dies, as it takes years to work through the grief and find a new way of life.
Pioneering organisations across the UK have developed innovative ways of supporting younger people that can provide ideas and inspiration for new projects to fill gaps in provision.