A third of people with dementia feel apathetic and want to give up after deteriorating mentally and physically during the coronavirus lockdown, research from a charity suggests.
A similar proportion now do not feel confident going outside as restrictions begin to loosen, according to a survey of 1,831 people with dementia and their carers in June.
Nearly half (45%) of respondents said lockdown has caused their mental health to deteriorate, while one in 10 (11%) have lost friends since the social distancing conditions were imposed, the Alzheimer’s Society said.
And 46% of unpaid carers said their loved ones are now feeling stressed, anxious or depressed.
The charity’s support services have been accessed more than half a million times during lockdown, with 15,000 calls to the Alzheimer’s Society’s dementia connect support line.
Dementia and Alzheimer’s disease is the most common pre-existing condition in the almost 20,000 care home residents who died with Covid-19 between March 2 and June 12, according to the Office for National Statistics.
The charity says the suspension of normal life and the knock-on effect of the virus on mental health “has likely resulted in the massive increase of ‘unexplained’ non-virus-related deaths”.
Unexplained ‘excess’ deaths of people with dementia were 83% higher in England and 54% higher in Wales in April, the charity added.
The survey also revealed half of people with dementia have had fewer in-depth conversations than before lockdown.
Three in 10 people with dementia have gone at least four days without having a conversation lasting more than five minutes – rising to 46% of those living alone.
And one in eight (12%) revealed they have gone a whole week without spending more than five minutes talking to someone.
Chris Maddocks, who had to give up her job after being diagnosed with dementia in 2016, said she has struggled with her memory, concentration and confidence since lockdown began.
The former police officer has also become very sensitive to noise and became very anxious after an experience at a beach where people were not socially distancing.
The 64-year-old from Eastbourne told the PA news agency: “It’s taken me four years to try and rebuild my life back up and still feel I have some worth and some value. And then suddenly when you’re in lockdown you think, ‘well I haven’t got anything now’.
“It just brought feelings back of feeling useless – similar feelings after I had my diagnosis really and lost my job, and doing the things I was doing before lockdown I’d gone from feeling useless to feeling useful, and from feeling hopeless to feeling hopeful. And it was with the support of the Alzheimer’s Society I got to that place.”
She and her partner struggled to get an online food delivery slot, only succeeding two months into lockdown, because people with dementia are not considered part of the extremely vulnerable group, which Ms Maddocks said is “shameful”.
One person rationed out crackers and biscuits because they could not get a slot, she said.
Another person who used to be able to catch a bus to and from a day centre can no longer do this and has also lost the ability to get dressed and speak, she added.
She said “I think for the majority of people with dementia, certainly lockdown has had a negative impact on their mental health. And so many people don’t feel at all confident in going out, and I’ve heard some people say they are not going to go out again until a vaccine is found.”
She has raised more than £1,500 for the Alzheimer’s Society after getting her head shaved in June.
Karen Beattie, whose husband of 24 years Robert has Alzheimer’s, said the last few months have been “awful” as she has watched her partner deteriorate.
The pair, from Abergele, north Wales, have been shielding at home and getting food deliveries but the lack of daily outings has caused Mr Beattie’s walking to decline.
The 66-year-old is no longer able to make Mrs Beattie, 59, a cup of tea with milk out of the glass bottles they are now having delivered, so she regularly decants them into plastic containers.
She told PA: “He’s depressed, watches telly all the time, doesn’t speak to me sometimes for days. I have to coax him to speak, it’s gone really bad and it’s going to get worse I think.”
She added: “We used to go round with (the programme) Dementia Friends everywhere in universities all around Wales and schools and so forth, and Rob used to wear his uniform, and when he wears his uniform he’s a totally different person, there’s no issues with the words or anything. So he’s missing that social side of it because he can’t go out and do what we used to do.”
Alzheimer’s Society chief executive Kate Lee said: “As lockdown begins to lift and the true extent of its knock-on effect to the health and wellbeing of people with dementia becomes evident, it’s never been more important to ensure no-one faces this crisis alone.”