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Lonely and struggling to cope: Alzheimer’s Society reveals grave reality for people affected by dementia

Alzheimer’s Society

6 min read

During what should have been Dementia Action Week, Alzheimer’s Society survey uncovers what everyday life is for thousands.

A survey conducted by Alzheimer’s Society of around 880 people living with and caring for someone with dementia reveals many are experiencing crippling loneliness and are struggling to cope in the pandemic. Unfortunately, Alzheimer’s Society’s funds, like other charities, have been badly hit. The leading dementia charity is facing a worst case, but increasingly likely, drop of £45 million in income when demand for its services has skyrocketed and has launched an Emergency Appeal.

Over three quarters (78%) of people affected by dementia disclose that the coronavirus pandemic has made them feel more lonely or isolated than before, with around half of this group (37%) revealing they feel significantly lonelier and more isolated.

This comes on top of Alzheimer’s Society-funded research from Improving the Experience of Dementia and Enhancing Active Life (IDEAL) programme at the University of Exeter. The large-scale study is one of the first to look at loneliness in family carers and people living with dementia. Nearly two thirds of family carers (62%) and around a third (30%) of people with dementia reported loneliness before lockdown measures were put in place.

An estimated 95% of people with dementia are over 65 and many live with other underlying health conditions, making them more vulnerable to the virus – emerging data from one large study also says that risk of death is 39% higher among people with dementia. The neglect of the care sector during coronavirus also significantly impacts people with dementia who are the main recipients of social care, with 70% in care homes and, 60% relying on homecare having dementia. Unsurprisingly, around half of survey respondents (46%) say they are struggling to cope in the current crisis and one in seven (14%) admit they are finding it extremely hard to cope with daily life. 

Around a third (34%) say they are most worried about not seeing family and friends, while over a quarter (26%) are most concerned about dementia symptoms worsening and one in eight (13%) say their biggest source of anxiety is around what the future holds.

In addition to the survey, an Alzheimer’s Society-hosted focus group of 40 people delved deeper into how coronavirus has changed everything for people affected by dementia, because of the confusion they face during lockdown, their reliance on the care system, and the damage that isolation could do to their condition.

Concerns include the challenges around getting back to normality after lockdown measures are relaxed, with many having lost the confidence to go out and have seen their symptoms increase and cognitive abilities decline. Some admit that their mental health has been impacted and they feel a sense of loss, due to a loss of routine and lack of social contact. Some family carers are also struggling with a lack of respite and are in distress as they are unable to see family members living with dementia due to social distancing measures.

The figures have been released to mark what should have been Dementia Action Week, Alzheimer’s Society’s campaign to create a more inclusive society for people affected by dementia.

The postponing of Dementia Action Week, which sees thousands of events take place across England, Wales and Northern Ireland is just one example of how Alzheimer’s Society has been hard-hit by coronavirus, with major fundraising events currently unable to take place, at a time where vital services are in more need than ever

Alzheimer’s Society’s Dementia Connect support line has seen over 7,000 calls in the last two months. Between 23 March and 1 April, when lockdown measures were put in place, the charity’s online support community Talking Point saw a 550% increase in people joining. Last month saw more than double the number of registrations (1113) compared to March 2019 (526). 

The charity has responded by launching an Emergency Appeal to help fund the Dementia Connect support line, providing support and assistance to those who need it most. The campaign has been backed by celebrity supporters, including Jonathan Pryce CBE, Lesley Manville and Fiona Phillips. All Alzheimer’s Society frontline staff have been moved to man the phone lines and in addition to the support line, over 45,000 welfare calls have been made to Alzheimer Society service users to monitor their wellbeing and flag urgent needs. Virtual services are also being offered where possible, such as Singing for the Brain and its Carers Information and Support Programme (CrISP) - a short course aimed at those caring or supporting people living with dementia.

Alzheimer’s Society is also calling for people to sign up and become a Dementia Friend. This online Information Session explains more about how dementia affects a person and armed with that understanding, the ways people can help those living with the condition during the pandemic, like having a chat by video call with a family member or delivering shopping for a neighbour.

Alzheimer’s Society supporter Jonathan Pryce CBE, said: “Having a dementia diagnosis, or caring for someone with the condition, should never mean people feel abandoned with nowhere to turn. Alzheimer’s Society’s Dementia Connect support line has received thousands of calls from people affected by dementia struggling to manage during these unprecedented times. That’s why it’s so important to donate to Alzheimer's Society’s Emergency Appeal to make sure no-one affected by dementia is left alone.

Kate Lee, Chief Executive of Alzheimer’s Society, added: “Coronavirus has turned life upside down for the thousands of people affected by dementia; many are scared, lonely and struggling to get the help they desperately need. During the pandemic, our frontline team has been raising safety alerts, delivering regular welfare calls, and supporting those who have nobody else to turn to via our Dementia Connect support line. They have dealt with matters of life and death. But thousands more need help and with Alzheimer’s Society facing a drop of £45 million this financial year, this lifeline is at risk, which is why we are asking people to donate to our Emergency Appeal.”

Andy Woodhead, who lives with dementia, said: “I am finding lockdown very difficult, but help from Alzheimer’s Society is keeping me going. A loss of routine and social interaction has led to depression, anxiety and agitation. I worry now that when lockdown is over, I will have lost the confidence to go out and may not be able to go back to things as they were. My family has also had to deal with the changes in my behaviour and wellbeing and because they have to self-isolate with me, there is very little chance for respite.”



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