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One in five people with dementia gets no support

Poll reveals postcode lottery of care

Jo Carlowe

Thursday, 03 July 2014

One in five people affected by dementia gets no information and support, according to new data. 

The poll of people with dementia, carers and people with a family member or friend with dementia was carried out by the Alzheimer’s Society. It reveals a shortage of post-diagnosis support provision, with 90% of those surveyed dissatisfied with the amount of information and support provided.

These findings coincide with the launch this week of the Alzheimer’s Society’s new campaign, Right to Know, to ensure people with dementia get a diagnosis and, following that, access to information, support and available treatments.

This campaign is launched to voice concerns of people affected by dementia, with 97% of respondents agreeing that the Government should do more to support people who have a dementia diagnosis.

Jeremy Hughes, Chief Executive of Alzheimer’s Society, said: “Like entering a maze blindfolded, too many people with dementia are left without a guiding hand to help them come to terms with this debilitating, terminal condition. The Government has shown clear commitment to improving the lives of people with dementia and action is underway to improve diagnosis rates. However, we cannot escape the lack of support following a diagnosis which leaves vulnerable people adrift. 

“We are urging the Government to ensure every person with dementia has access to a Dementia Adviser - a named contact who can help them come to terms with the diagnosis and help them find the support they need to live their life."

As well as improving post-diagnosis support provision, the charity is calling for:

  • A 66% dementia diagnosis rate across all areas – with a commitment now to reach 75% by 2017
  • No one to wait longer than 12 weeks from seeing their GP to diagnosis
  • A guarantee that everyone has access to a Dementia Adviser or equivalent following a diagnosis

Of the 665,065 people in the England living with dementia, less than half (48%) currently have a formal diagnosis. There is wide regional variation in diagnosis rates. In the best performing areas, 75% of people with dementia currently have a diagnosis, while in others little more than one in three people with dementia get diagnosed.

The Prime Minister’s Challenge on Dementia set about to improving diagnosis rates. Progress has been slow but steady, with diagnosis rates in England increasing by around 2% a year.

“The small improvement in dementia diagnosis is good news, but the extreme variation across the country is unacceptable. Everyone with dementia has a right to know. To have access to the certainty of a diagnosis and the right support to comes to terms with and manage the condition should not depend on your postcode,” added Jeremy Hughes. 

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