'Anxiety and fear' on the rise in dementia patients due to Covid-19 crisis
Research carried out by The Alzheimer Society of Ireland to identify the current challenges brought about by COVID-19 health crisis as experienced by people with dementia and family carers has found a rise in the cases of isolation, loneliness, boredom, anxiety and fear.
The ASI’s Dementia Advisers have reported an increase in responsive behaviour from people with dementia including confusion, paranoia, delusions, agitation, and other behavioural changes, with one Dementia Adviser likening deterioration of one person with dementia like “falling off a cliff edge.”
The research, which included the views of 160 people with dementia, family carers, Dementia Advisers and Dementia: Understand Together Community Champions, found that 73.3% of people with dementia feel they need some support at the moment with most requiring both practical and emotional supports.
77.6% of family carers reported needing supports including practical supports, emotional supports and in particular, carers are worried about getting sick and not being able to care for loved ones. In addition, almost 95% of Dementia: Understand Together Community Champions feel that with local services such as daycare, Alzheimer Cafes and community activities suspended people affected by dementia require alternative practical or emotional support or both.
The Alzheimer National Helpline 1800 341 341 is experiencing an increase in callers with 1,496 service users getting in touch from January to March. In March, 410 people contacted the service.
The Helpline has seen a jump in enquiries relating to the following: Responsive Behaviours such as people with dementia becoming increasingly more confused, paranoia, delusions, agitated, sleep disturbances; Main Carers are looking for support and reassurance on how best to support their loved ones who are self-isolating or cocooning. The carers are experiencing burnout and stress as they were supported by services, family members and neighbours but are now caring 24 hours a day; and about Practical Support with people living with dementia lacking insight into current situation – continuing to go out, not aware of the need for social isolation, refusing to wash hands on return to the house and how to manage this in the best way. This was also found in the research.
"The ASI continues to support people with dementia and their families as our Home Care, Dementia Advisers, Alzheimer National Helpline and Online Family Carer Training are all still running. In addition, we are implementing new ways of providing ASI supports remotely to our clients and their families such as regular telephone calls and activity packages for people to use in their own homes," a statement read.
"For example, in the past five days ASI staff have made 1,689 telephone calls to their clients or their main carer, 715 calls to family members where needed and 144 follow-up calls to Public Health Nurses. In addition, The ASI is developing alternative support services to be delivered remotely.
"Last week, The ASI launched an urgent appeal asking members of the public to make a special emergency donation to help provide essential care and support to those living with dementia whose lives are being torn apart by Covid-19 on www.alzheimer.ie.
"Covid-19 has resulted in a perfect storm for The ASI with Alzheimer’s Tea Day is now postponed contributing to a severe drop in fundraising of €1 million; 48 day care centres are closed; vital supports such as Social Clubs, Alzheimer Cafes and Support Groups are all postponed until further notice.
"Without its usual fundraising income and without the HSE making up the shortfall in the immediate term the organisation will struggle to deliver these alternative services as well as be able to revert immediately to providing all services when the crisis is over."
The Alzheimer Society of Ireland CEO, Pat McLoughlin said: “There was a crisis in dementia care in Ireland long before COVID-19 – but now it’s unthinkable what people with dementia and their carers are going through with now access to vital key supports and services. This research reveals the true impact of COVID-19 on already vulnerable people in our communities. There is a real sense of fear, anxiety and isolation out there and people are crying out for support and this desperate time.
"Everyone’s lives have been turned upside down during this health crisis – but people with dementia are particularly vulnerable here. We have heard that people with dementia are being sent home from hospital without adequate home and community support in place; concerns raised about an increase in responsive behaviour due to social isolation and changes in routine; and immense pressure on family carers who are now housebound and can’t leave the house, even for a walk.
"People being diagnosed with dementia does not stop due to COVID-19 - it is increasing all the time with 30 new cases per day. These people need support. Despite a number of our supports and services being closed, we're still supporting people online or on the phone. We are still available to those who are most vulnerable in our communities during this health crisis.”
The ASI has developed some tip sheets to help support people with dementia and their families in a challenging and rapidly changing situation including the following:
Tips for vulnerable adults
Tips for supporting vulnerable people in the community
Tips for nursing home restrictions
Prepare & Care: A simple, step by step guide to caring for a loved one living with dementia
All of these resources are available on www.alzheimer.ie.
For more information on supports and services during this challenging time, contact The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am–5pm and Saturday 10am–4pm on 1800 341 341. Email at firstname.lastname@example.org or via Live Chat at www.alzheimer.ie.