One in five people affected by dementia (21 per cent) were given no information and support after a dementia diagnosis, finds a poll carried out by Alzheimer’s Society.
The poll of people with dementia, carers and people with a family member or friend with dementia reveals a desperate shortage of post-diagnosis support provision, with 90% of those surveyed dissatisfied with the amount of information and support provided.
Alzheimer’s Society is today (2 July) launching a new campaign, Right to Know, to ensure people with dementia get a diagnosis and, following that, access to vital information, support and available treatments.
This campaign is launched to voice concerns of people affected by dementia, with 97 per cent 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. People living with dementia tell us that with the right support they can live well and Alzheimer’s Society is here to support them, but a bold commitment is also needed to reach all those in need.
‘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.’
Shelagh Robinson, 73, has dementia and lives in Crewe with her husband Paul. She says:
‘When I received my diagnosis I had gone to hospital alone. I was with the doctor for less than five minutes. They told me my scans had shown that I had dementia and was suitable for medication. They said they would write to my GP, arrange the necessary tests and see me in 12 weeks. It was like being told I had tonsillitis. That afternoon was one of the worst of my life because of the total lack of empathy and support. I didn’t know where to turn.’
As well as improving post-diagnosis support provision, the charity is calling for:
- A 66 per cent dementia diagnosis rate across all areas – with a commitment now to reach 75 per cent 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 per cent) currently have a formal diagnosis. There is wide regional variation in diagnosis rates. In the best performing areas 75 per cent 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 per cent 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.