Lockdown calls for help from people with dementia and their carers rocket by 550%

The Alzheimer's Society is facing huge online demand for dementia support during the lockdown with a 550 per cent leap in the number of people joining its Talking Point service, while Dementia UK is also seeing a big rise in calls to its helpline.

The Alzheimer's Society's Talking Point online service, which offers guidance for those affected by dementia, had almost a 600 per cent surge in new joiners in late March, when the UK's coronavirus lockdown was introduced, compared to early March.

The total monthly figure for registrations in March was 1,113 - more than double the number of registrations received (526) in March 2019. The charity has said it also fears for those at home who rely on carers who may need to self-isolate.

Concerns about increase in symptoms, rapid decline and food

A 44 per cent rise in the number of calls to the Admiral Nurse Dementia helpline has been reported, as a result of the lockdown, by the charity Dementia UK.

Dementia UK, which runs the helpline, has said it has seen a large rise in calls for help from families looking after someone with dementia. In total 2,114 families called the helpline in March this year, up from 1,464 in March 2019.

Dementia patients are reporting concerns about maintaining supplies of food and medications, anxiety about what would happen if they were admitted to hospital, feelings of loss and grief, increases in symptoms like agitation with the changed routine, and a more rapid decline in cognitive and functional ability.

For carers, the lockdown is depriving them of respite opportunities away from their caring role and increasing their fear about the safety of the person with dementia. They are also finding it difficult explaining the coronavirus crisis to them.

Paul Edwards, director of clinical services at Dementia UK, said: "Many people with dementia are hidden within statistics already, deprived the opportunity to be seen as people deserving of support before things reach a crisis.

"Our Admiral Nurses are working day in and day out on our Helpline to support families affected by the condition”.

’I'm finding it increasingly difficult'

Families with dementia are feeling particularly challenged by the lockdown measures. With normal support networks such as carer groups, day centres and activities shut down and friends and relatives advised not to visit, many family carers will get no respite at all.

Maisie is a 19-year-old university student who decided to move in with her 66-year-old grandmother when the lockdown was introduced. Her grandmother Terry was diagnosed with Alzheimer's disease four years ago.

Maisie says “I am finding it increasingly difficult to care for my Nan as it is a really lonely and isolating time. More than anything, I miss my family.

“We are struggling to find things to do. There are limited things that she used to enjoy which she can still do.

“It’s very difficult having to continually say 'No, you can’t go and visit your friends because of coronavirus'. She asks many times a day and in the end I just feel horrible always telling her she can’t.”

Dr Hilda Hayo, chief Admiral Nurse and chief executive of Dementia UK, said: “It might not be easy to get a person with dementia to understand the need for isolation during the coronavirus outbreak.

“If you know that someone who lives near you has dementia, please offer to help them during this difficult time. Please call the dementia specialist nurses on our Helpline if you are not sure how.”

Questions from callers to the helpline during lockdown include: “I look after my husband at home who has dementia and our weekly carer’s group has now disbanded. What are we going to do?”

Dementia UK advises: ‘It’s important to stay connected to people. Set up regular Skype calls with friends and family so you’re staying in touch and have something to look forward to. Keep yourselves entertained and active, even if this just means a walk around the garden or even your home.’

Alzheimer’s Research warn of diagnosis delay in lockdown

Alzheimer's Research UK is concerned about a fall in the number of people getting a dementia diagnosis during the pandemic. Professor Martin Marshall, chairman of the Royal College of GPs, told MPs in the Commons Health and Social Care Committee, he was worried about a reduction in diagnoses of dementia due to the closure of memory clinics.

Samantha Benham-Hermetz, director of policy and public Affairs at Alzheimer’s Research UK, said: “It’s crucial that people are still able to receive a dementia diagnosis at this time. If not, they face missing out on the right support, along with treatments that may help with their symptoms and improve their quality of life.

“The message has been that the NHS is still open for business and it is essential that measures are still in place for people concerned about dementia, so they can receive the help they need.”

’Like coronavirus, dementia is invisible’

Currently, there is an estimated 120,000 people living alone with dementia in the UK, according to the Alzheimer’s Society.

Tommy Dunne, lives with dementia at his home with wife Joyce. He was interviewed by homecare.co.uk and has posted his own dementia diary on 29 April.

Tommy Dunne wants to tell the world: “Just like the coronavirus, dementia is invisible until it really gets hold.

“The world is working tirelessly to find a cure for this terrible, terrible disease and dementia does not discriminate. It doesn’t care who it takes, it takes the young, it takes the old, it takes the rich and it takes the poor. And I pray for all those lost souls that have gone.

“When a cure for the virus has eventually been found, and the terrible war won, I hope people don’t forget our battle for a cure has just begun and in our great rush to banish social isolation together we need to stand as one.”

Anyone with worries about dementia can call Dementia UK’s Admiral Nurses Dementia helpline on 0800 888 6678 or you can email helpline@dementiauk.org.