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RAISING AWARENESS OF FTD
You may be aware that over recent months we have been preparing for the launch of our Raising Awareness campaign. We are now asking members of the FTDSG to join us in this activity by circulating our Raising Awareness flier as widely as you are able. GP surgeries, carer groups, local newspaper and radio stations are all potential sources of the much needed publicity these diagnoses need and you have access to different and various routes by which to promote awareness. Please download the flier plus any of the relevant template letters available on this site.
Think dementia is what happens when you get old? Think again. This strikes when you are in your prime.
FTDSG is a UK based charity, which was established 16 years ago to meet the needs of those who care for people with frontotemporal dementias (which includes Picks Disease). What differentiates these dementias from others is that they commonly affect people of working age. They may be dismissed from work or lose their business before they have a diagnosis.
The disease is difficult to diagnose because the sufferer is not only younger than expected for dementia but displays different symptoms which may not lead to a correct diagnosis. The carer may be dealing with difficult and strange behaviour as the frontal lobe is affected, but may find little sympathy or understanding from doctors, family or friends.
Diagnosis takes up to three years and although there is progressive deterioration leading to death, there is no treatment.
Partners often combine raising a family with earning the income as well as caring. They and their children may be dealing with anti-social behaviour, aggression and incontinence in the home. Often the affected person may spend profligately and deprive them of family finances.
There are few facilities to deal with younger people with dementia and support is often scarce. The sufferer does not ‘fit’ into the usual day-centres or group facilities and there is little respite for the carer.
We are seeking to raise awareness of frontotemporal dementias and thereby to increase support for those affected by:
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Increasing awareness of health service providers. Of particular concern is the need for early and accurate diagnosis
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Highlighting the need for specialist provision. It needs to reflect the younger age-group affected by FTD and to be flexible in supporting them and their families.
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Addressing the unique and particular financial implications of such a diagnosis.
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Providing support groups. These are invaluable in providing peer support and specialist experience together for carers.
The Frontotemporal Dementia Support Group [formerly Picks' Disease Support Group] has successfully piloted its Raising Awareness campaign amongst the Regional Contact people and now invites members and otyher interested partieshelp us roll it out more widely.
If your organisation would like more information, please contact
jill.walton@ftdsg.org
Alternatively, telephone Jill Walton on 07592 540 555.
Downloadable documents for the Raising Awareness campaign
Raising Awareness Document
Letter to request display
Letter to request radio coverage
Letter to request newspaper publication
Thank you for your help.
UPDATES AND FORTHCOMING EVENTS.
Rare Disease Day 2013 – We need your help!
The FTDSG is a member organisation of Rare Disease UK, and values the platform it gives us to have our interests represented.
Please contact your local politician to raise awareness of rare diseases on Rare Disease Day and help to ensure the success of the UK plan for rare diseases...
Use this link to access more information about the day:
http://www.raredisease.org.uk/contactcampaign13.htm
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