Rare dementia research and support is given charity boost

Inherited forms of Alzheimer's disease and frontotemporal dementia among diseases to be helped by commitment to research

People with rare forms of dementia are to be given the opportunity to engage in research and access support as a result of charity funding.

Researchers at University College London (UCL) institute of neurology plan to reach a further five support groups for people with rare dementia, following a £23,000 donation from Alzheimer’s Research UK.

The funding will help the UCL team provide information across the support group network, which operates under the banner Rare Dementia Support. The money will also help establish new groups to allow people to engage with research taking place across England.

Jill Walton is a nurse and support group coordinator at UCL who helps those affected by rarer types of dementia, such as inherited forms of Alzheimer’s disease and frontotemporal dementia.

More than 40,000 people in the UK develop dementia under the age of 65 and Ms Walton said there is a still a ‘black hole of very little information about rare dementias’.

‘Rare dementia is not often diagnosed in a timely manner and could be two or three years down the line following symptoms,' she said. 'There can be misdiagnosis, with patients prescribed antidepressants or even referred to marriage guidance because of changes in their behaviour.

‘This can be catastrophic for people who lose their jobs and experience breakdowns in relationships. With extra funding we now have more of a chance to help people when they are at their most vulnerable.’

For more information on Rare Dementia Support click here

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