Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses: frontotemporal dementia (FTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), familial Alzheimer’s disease (FAD) & familial frontotemporal dementia (fFTD).
We provide regular support group meetings, newsletters, telephone contact networks, websites and access to information and advice for people affected by these five rare dementia conditions.
Our vision is for all individuals with or at risk of one of these rarer forms of dementia to have access to specialist information, support and contact with others affected by similar conditions.
Rachel and Janette liaise with other affiliated organisations to facilitate support group meetings in other parts of the country and are keen to extend the reach and remit of the support network through meetings and individual regional contact facilitators.
To find out more about the support we provide, take a look at the information about one of our groups:
Rachel Crane works as a Psychology Research Assistant and Support Group Facilitator for Rare Dementia Support. Her roles includes telephone and email support and advice to support group members, facilitating London and national support group meetings and managing online communications. Rachel has a Psychology BSc from the University of Leicester and has worked across a number of specialties, both in the NHS and private sector. Whilst working as an Assistant Psychologist, Rachel developed a strong research and clinical interest in neuropsychology, with a specific focus on rarer forms of dementia. Working in Memory Clinics, she came to realise that the post-diagnostic support for people with rarer dementias was extremely limited in many areas, and this inspired her to join Rare Dementia Support.
Janette Junghaus is responsible for providing day-to-day support for the Created Out of Mind team, coordinating collaborative operations with Wellcome Collection and assisting with the organisation of dementia support groups. Janette also coordinates the UCL DRC research team; managing various administrative tasks including recruitment and ethics processes. Janette has a background in languages and a fascination with the human brain. These interests led her to complete a part-time Masters in Neuroscience, Language and Communication at UCL in 2014. Her research during this time focused on multilingual language recovery in post-stroke aphasia. Janette undertook her studies whilst continuing to tread the professional path of a PA in luxury interior design and architecture. Her background also includes working in Fashion & Lifestyle PR, running professional networks, and teaching in Japan.
Jill Walton currently works as a Nurse Coordinator for Rare Dementia Support which provides support to people living with a rare diagnosis of dementia. With over twenty five years nursing experience, she has degrees in psychology and gerontology and has combined practical caring with academic research and learning. Jill believes that people living with a diagnosis of dementia are best enabled to embrace their diagnosis when they are well informed and resourcefully equipped. In addition to her work with support groups , which was established in 1994, she is the founder of ‘Dementia Dimensions’ a resource through which she has delivered tailored training courses and presentations.