A West Wight man has spoken of his experiences surrounding his wife’s dementia diagnosis as it is revealed more than 1 in 4 people with dementia in the South East battle symptoms for over 2 years before getting a diagnosis.
A new Alzheimer’s Society survey of more than 1,000 people with diagnosed dementia, carers and people without a diagnosis, has found 29% in the South East lived with the condition for more than 2 years after first noticing their symptoms, before getting a diagnosis.
The figures, released to mark Dementia Action Week (16th-22nd May), also showed a further 31% in the area waited between 1 and 2 years.
Alzheimer’s Society’s survey also revealed that in the South East more than a third (35%) of those who were diagnosed after 2 years only sought a diagnosis because they had reached a crisis point – with more than two-thirds struggling to look after themselves (69%), more than a third finding it too difficult to cope (38%) and almost half having an accident (46%) before they sought help.
For 76-year-old Tony Knight, who lives in the West Wight, it wasn’t until his wife of 57 years, Kath, received her diagnosis in 2019 that he appreciated she had dementia. Once they were informed, they were able to plan for the future.
Tony explains:
“Kath had problems with her speech and some other symptoms so we saw the GP who did some tests. Kath was then referred to a specialist from the memory service. They asked Kath to take part in some written and spoken tests and eventually this led to a diagnosis of vascular dementia in May 2019. Once that happened, things fell into place and made sense.”
Tony undertook dementia training once Kath was diagnosed and then realised that there were signals he had missed early on; the mispronouncing of words, the restriction of peripheral vision and mood swings. The couple put Powers of Attorney (POA) in place and have since made funeral plans.
Tony said:
“It’s critical you have a plan – what to do, where to go and how to deal with it. Because it becomes a two-pronged thing; there’s the person with dementia and also the carer. The burden on the carer gradually increases. You don’t appreciate the weight that eventually gets on your shoulders.
“The pandemic and lockdowns were a very difficult time. It must have been worse for those who had not yet had a diagnosis. It was a relief for me that Kath got her diagnosis before that happened as we were able to put plans in place and get the help and support we needed.”
In a bid to tackle the problem, Alzheimer’s Society has today launched a new campaign – ‘It’s not called getting old, it’s called getting ill’ – to encourage people worried about their own or their loved ones’ memory to seek support in getting a diagnosis.
This Dementia Action Week, Alzheimer’s Society has worked closely with leading clinicians to make the diagnosis process easier, developing a new ‘symptoms checklist’, available on their new online hub, highlighting changes that might be due to dementia. The check list can be printed off and taken to the GP to help people explain their symptoms and get the support they need.
Linda Goddard, Alzheimer’s Society Area Manager, said:
“Asking the same question over and over again is not called getting old, it’s called getting ill. If you’re worried for yourself or someone you love, take the first step this Dementia Action Week – come to Alzheimer’s Society for support.
“The stark findings of our survey released today show just how dangerous it can be to battle dementia symptoms alone and put off getting help.
“Yes, getting a diagnosis can be daunting, but it is worth it. More than nine in 10 people with dementia told us they benefited from getting a diagnosis – it gave them crucial access to treatment, care and support, and precious time to plan for the future.
“With the pandemic causing diagnosis rates to plunge, it’s more important than ever to seek help. You don’t have to face dementia alone, we’re here to support everyone affected.”
Part of Jane’s surname seems to be missing in the photo, it only says Jane Grew.