Lockdown isolation causes shocking levels of decline for people with dementia, who are rapidly losing memory, speech, and ability to dress and feed themselves

People with dementia worst hit by coronavirus – Alzheimer’s Society with One Dementia Voice call for Government to reinforce family carers being given ‘Key Worker’ status.

An Alzheimer’s Society investigation reveals the shocking side effect of lockdown on the symptoms of people with dementia.

Involving almost 2,000 respondents affected by dementia, it shows that since being forced to stay isolated and inside their homes, more than four in five (82%) reported a deterioration in people with dementia’s symptoms.

Of those who had seen a decline, around half reported increased memory loss (50%) and difficulty concentrating (48%). More than one in four (27%) said reading and writing has become more difficult, and one in three said the same for speaking and understanding speech (33%). Worryingly, more than a quarter had seen a loss in the ability to do daily tasks, like cooking or dressing (28%).

Regular physical, mental and social activity can help slow the progression of symptoms of dementia, a condition that affects over 850,000 people across the UK.

The coronavirus pandemic has hit people with dementia the hardest, both in terms of deaths from the virus itself, and from a huge increase in ‘unexplained’ non-virus-related deaths, totalling over 13,000 additional deaths between March and June. 

The knock-on effect of lockdown is interruptions and suspensions to health and social care services, upended routines, care home visitor restrictions and a prolonged period of social isolation for people with dementia.

The findings confirm what the charity has heard since March through its Dementia Connect support line, with symptom deterioration the second most common reason for calls behind mental health impact. It underlines the vital role of social contact in keeping people with dementia well. Since lockdown began, the charity’s support services have been used more than half a million times, providing a lifeline to thousands of people.

With almost a third (29%) of people with dementia also reporting that the pandemic has had a negative effect on other aspects of their physical health or underlying conditions, the charity fears a further tragic loss of life, especially in the event of a second coronavirus wave over winter.

The results come after Alzheimer’s Society joined forces with a coalition of the leading UK dementia charities – One Dementia Voice – to demand designated family carers are prioritised for safe, regular testing, just like Key Workers, and are seen as an equal partners in care, so they can visit loved ones with dementia in care homes. 

While England guidance has finally been published (23 July), the coalition is very concerned that the Government has handed over responsibility for allowing visits to overstretched local decision-makers, raising the possibility of a postcode lottery in access. The Government must ensure that it’s understood that family carers are an integral part of the care system and when removed, the essential care and wellbeing of the individual suffers.

Today’s findings show the need for this testing to be rolled out to family carers of people with dementia who live at home as well.

Paula Saunderson, 65, from Newbury, Berkshire, cares full-time for her mum, Pat, who is 88 and has dementia as well as limited mobility, incontinence, and heart failure. Paula said:

'Compared to the start of lockdown I’ve seen a big difference in mum, she is much wobblier and at a greater risk of falling now. There has been a definite change.

'Before lockdown we would get out of the house every day, but now she’s lost her stamina from being stuck inside, and is sleeping much more. Her only stimulation has been watching birds on the patio.

'She has lost all motivation and it’s getting harder to get her interested in things. Lockdown has been a very slow and weary period for us both.'

'I don’t want to move mum into care home, but with her symptoms getting worse it’s looking more and more likely.'

Kate Lee, Chief Executive at Alzheimer’s Society, said:

'Alongside the devastating loss of life from coronavirus itself, the loss of seeing and talking to loved ones is having a terrible impact on people with dementia’s health. We hear daily through our Dementia Connect support line from people terrified they’ll lose the ability to speak, walk and even feed themselves.  

'With the right support, many people with dementia can continue living independently for years but the pandemic is robbing them of that chance.

'Make no mistake: people with dementia are at huge risk from a second wave if we don’t take urgent steps to protect them.'

'It’s encouraging that the Government has recognised the importance of social contact for those in care homes but they have to ensure family carers are seen as equal partners in care with Key Workers – and the thousands of people living with dementia in the community mustn’t be forgotten.

'Coronavirus has dreadfully exposed the state of social care for all to see – the Government needs to address universal demand for the solution to fixing dementia care once and for all.'

More than a year after the Prime Minister promised to fix social care, Alzheimer’s Society is urging the Government to finally provide a social care system fit for purpose that stops devoted family carers being forced to plug the gaps and keeps people with dementia protected.

Get the full findings

The full survey results and methodology are available to download in PDF format.

See the survey results