Welcome to the Primary Progressive Aphasia (PPA) Support Group, a service that is provided by the charity Rare Dementia Support (RDS) to support people affected by any PPA syndrome, including progressive nonfluent aphasia, semantic dementia, and logopenic aphasia. The pages here provide information about PPA, and about our PPA Support Group. For information about Rare Dementia Support, visit our homepage.
If you would like to talk to somebody about how PPA is affecting you or somebody else, you can contact Nikki Zimmermann, our PPA Support Group Advisor. You can either email Nikki or leave her a voicemail message requesting a call back on 07388 220 355.
WHAT IS PPA?
The term primary progressive aphasia (PPA) refers to a group of degenerative brain disorders (dementias) in which loss of speech and language abilities is the leading and most prominent problem.
‘Aphasia’ refers to a neurological language problem; ‘progressive’, becoming worse over time; and ‘primary’, due to brain tissue changes rather than an external cause.
PPA affects both sexes and usually starts between the ages of 50 and 70. However, it can also affect older people, and rarely, younger people as well.
Within the umbrella term of PPA, three main patterns of language loss are recognised: progressive nonfluent aphasia (PNFA), semantic dementia (SD), and logopenic aphasia (LPA).
PNFA and SD fall within a larger group of brain disorders collectively called frontotemporal dementia (FTD), indicating the parts of the brain mainly affected: the frontal and temporal lobes. LPA, by contrast, is usually caused by the same proteins that cause Alzheimer’s disease (it is an unusual form of Alzheimer’s disease). We also run a frontotemporal dementia support group for people with behavioural variant FTD and all forms of PPA.
In most cases, we do not know what causes PPA in a particular person – in only a small minority of people is the disease caused by an abnormal gene (in contrast to the situation in behavioural variant FTD).
PPA SUPPORT GROUP TEAM
The PPA Support Group is run by a team based UCL Dementia Research Centre (DRC) as part of Rare Dementia Support, a small charity funded by the National Brain Appeal. Click here for the contact details for the PPA Support Group.
Jason Warren, Professor of Neurology
Nikki Zimmermann, PPA Support Group Advisor
Dr Chris Hardy, Research Associate
We know that receiving a diagnosis of PPA can be incredibly daunting. It can be completely overwhelming even to start contemplating what the future might hold and what first steps you should think about taking.
Here, we have tried to pull together information about some of the most important benefits and services that may be available to you. This is, deliberately, a succinct summary, and for more detailed information we would encourage you to look at the web pages maintained by the Alzheimer’s Society: these are comprehensive and an extremely valuable resource.
This booklet was originally written by the Cognitive Disorders Service at the National Hospital for Neurology and Neurosurgery (NHNN). We have now adapted it for Rare Dementia Support members and hope that you will find it helpful. You can access the booklet here.