This site is very much a democratic learning experience, and we need to work together to build the body of information available. Its success depends on people in the dementia community posting information and engaging in discussion. You can to post information in the form of documents, links, video, podcasts and blog commentary on this page. You can also have a dialogue with other people in the sector by setting up a discussion group.
If you have information/document(s) you would like to post about this page, click the button below.
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Title: Looks like Laury – Documentary about living with FTD (fronto-temporal dementia)
Description: What would you do if you started to disappear? At the age of 45, Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak. When a friend suggested making a film to capture her mysterious new life, Laury jumped at the idea. This is the profoundly personal portrait of a woman in the prime of life who invites us to witness her struggle to make sense of the unthinkable. For one year Laury’s friends Pam and Connie filmed what turned out to be her long, inexorable descent to frontotemporal dementia, a little-understood disease that strikes people in the prime of life. “Looks LikeLaury, Sounds LikeLaury” is the first experiential documentary about living with FTD, a fast-moving always fatal disease for which there is no cure or treatment.
Target Audience: This is targeted for the general public and may be of use in training and the sector. It is likely to contain sensitive information and may not be appropriate of people living with FTD or family carers of people with FTD.
Notes: The website itself also contains links to resources about FTD (non-vetted) and some video clips of an interview with a genetic counsellor about her take on the film and the feelings that may be experienced by the family and friends of someone living with dementia (FTD).
Pricing: The film can be purchased online in both electronic and hard copy. Pricing as per the website, but can be streamed for $4.99USD
Contact Person: email@example.com is the contact email address for any enquiries including purchasing hardcopies of the DVD. They also have a Facebook page.
Reviews: None yet – if you have completed this module and would like to provide a review outlining how this has been useful to you, please contact firstname.lastname@example.org. Thank you!
Contributor: Dementia Resources Project - 26 Jan 2017, 1:22 PM
Title: Guide for Journalists – YoungDementia UK
Description: This is a guide developed by YoungDementia UK and is designed to give information about younger onset dementia, to help media use appropriate language
Target Audience: Journalists, media, content writers, researchers and HCP writing information for people living with younger onset dementia.
Appropriate Audience: Anyone that is writing for or about dementia. This will also include those speaking about dementia to ensure the appropriate terms are being used.
Notes: In this guide, they refer to “working-age” dementia. This term is not commonly used in NZ, and can be very ambiguous as many people still enjoy meaningful working lives past the age of 65, so we recommend the use of the term “younger onset”. They also note the correct spelling and format of YoungDementia UK. It is important to check with organisations to ensure you are using and spelling their name correctly.
Contributor: Dementia Resources Project - 11 Apr 2017, 10:58 AM
Young Dementia UK
The Young Dementia UK Network is a movement of people committed to improving the lives of those affected by young onset dementia. The site is consumer focused with lots of great resources.
Contributor: Shereen Moloney - 23 Nov 2018, 11:46 AM
Young Dementia UK
The Young Dementia Network is a movement of people committed to improving the lives of those affected by young onset dementia. The site is consumer focused with lots of great resources.
Contributor: Shereen Moloney - 23 Nov 2018, 11:53 AM