Useful Links
The links provided here are for information and may be of assistance in helping you or the younger people living with dementia and their families that you work with. However we cannot guarantee the quality or veracity of the information contained within these sites. Further links will be added as these become available or known about.
UK based organisations that support younger people with dementia and their families;
Young Dementia UK is an organisation committed to providing information and support to younger people with dementia, their families, friends and supporters http://www.youngdementiauk.org/ In addition they currently provide support to people who live in the Oxfordshire area, in the form of one to one services, café’s, family support and social events.
The Alzheimer’s Society, provides information and support for people living with dementia and their families, which includes specific information for younger people living with dementia. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=164.
In addition, the Alzheimer’s society provide an online forum, talking point which may be of value to younger people with dementia and their families. http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200125.
Dementia UK provide specialist dementia nursing care for families affected by dementia https://www.dementiauk.org/ They also provide a specialist helpline for families.
University College London offer a website which provides information on research and clinical services for people with dementia, many of which are focused on less common/ rarer forms of dementia http://www.ucl.ac.uk/drc This includes a number of national support groups, many of which more frequently occur in younger people, including primary progressive aphasia, frontotemporal dementia and familial Alzheimer’s disease http://www.ucl.ac.uk/drc/support-groups.
The Good Care Group provides live-in care with professional and personalised service in the comfort of the home.
Organisations specific to certain types of less common forms of dementia;
Frontotemporal Dementia (including behavioural variant FTD, Primary progressive aphasia which includes Non-fluent Primary progressive aphasia and logopenic aphasia and Semantic Dementia).
FTD talk seeks to provide accessible information on the different types of frontotemporal dementia, including updates on recent research http://www.ftdtalk.org/.
The FTD support group which provides information and support for people living with FTD and their families. This includes face to face support groups in certain parts of the UK and a yearly conference hosted in London at University College London. www.ftdsg.org.
The Association for Frontotemporal Dementia which is a North American based organisation providing information, support and advice for people living with FTD and their families. This includes an online forum and a specific website for children affected by a parent or grandparent’s experience of dementia www.theaftd.org.
IMPPACT is an international website offering resources and support for people living with PPA and their families http://www.ppaconnection.org/.
Dementia Care Central is an American website that provides information about all forms of dementia, including frontotemporal dementia http://www.dementiacarecentral.com/aboutdementia/frontotemporal.
Dementia with Lewy Bodies
The Lewy body society seeks to fund research into dementia with lewy bodies. Their website provides information to people living with dementia with lewy bodies and their families. http://lewybody.org/.
Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD)
Although many people with these conditions are not referred to Mental Health Services and are often seen within Neurology Services, this is a UK based website that can help with understanding these rare and very challenging conditions http://www.pspassociation.org.uk/.
Blogs and Websites by and for People living with Dementia and their Family Members
A website for and by people living with dementia that seeks to represent, educate and support others living with dementia http://www.dementiaallianceinternational.org/.
A blog by Chris Roberts who is living with Alzheimer’s Disease http://mason4233.wordpress.com/.
A website by John Sandbolm who is living with atypical early onset Alzheimer’s disease http://www.earlyonsetatypicalalzheimers.com/.
A blog by Kate Swaffer who lives with young onset dementia in Australia http://kateswaffer.com/daily-blog/.
A website for Christine Bryden, who lives with young onset dementia in Australia and has written a number of books including Dancing with Dementia published in 2005 http://www.christinebryden.com/index.html.