New ASI Research: Carers in Crisis and Deterioration in Health for People with Dementia
About Our Research
New research carried out by our Research and Policy team has found a rise in the cases of immense stress, burnout and anxiety with one respondent describing their loved one as: “Depressed, agitated, angry, anxious and unhappy” as the result of the impact of the COVID-19 health crisis on their lives due to the withdrawal of vital dementia-specific supports and services.
The second research report produced on the issue, ‘Caring and Coping with Dementia During Covid-19’ further highlights the crisis aftermath of life in lockdown which has taken an enormous toll on people’s lives resulting in carers facing crisis with extra workloads, constant anxiety and exhaustion.
As carers are witnessing an alarming deterioration in the health and wellbeing of people with dementia, they are also coping with grief, loss and powerlessness.
The toll on people’s lives has only intensified as the COVID-19 restrictions imposed on dementia-specific services continue with no end in sight despite other lockdown restrictions lifting in recent weeks.
This new report – which includes the views of People with Dementia, Family Carers, our Dementia Advisers and our Alzheimer National Helpline – highlights that 86% of carers are concerned about a decline in their loved one while 58% of people with dementia report feeling “lonely”, “isolated”, “trapped” and “confined”.
Family carers who are dealing with grief, loss and a tremendous workload, are often facing this crisis alone as they feel unable to reach out to family members at this time with 77% agreeing that their caring workload has increased since COVID-19.
In our initial Covid-19 Survey in early April, some carers expressed the fear that they would be forgotten in the midst of the crisis. It is so obvious from reading this report that this fear has been realised.
- Please read ‘Caring and Coping with Dementia During Covid-19’ report HERE
- Plain Language Guide HERE
- Read Official Press Release HERE
- More from our Research and Policy Team HERE
National Media Coverage
Supporting People During Covid-19
During the Covid-19 pandemic we have continued to support people with dementia and their families as our Home Care, Dementia Advisers, National Helpline and Online Family Carer Training have remained open.
We have also implemented new ways of providing ASI supports remotely to our clients:
- Expansion of National Helpline which offers a 1:1 call with a Dementia Nurse
- Alternative Activity Therapy for people living with dementia and their family carers who availed of day care prior to COVID-19
- Social Calls and Activity Engagement Calls (with Activity packs) on a weekly or biweekly basis
- Online Support Group for Family Carers to provide support and information to family carers
Full information on how we have supported and represented our people during Covid-19 HERE
Views of a Family Carer
Full-time carer Denise Monahan (56) from Tallaght in Dublin believes that it is crucial that the Government now issue a roadmap for the reopening of dementia-specific services such as day care. Denise’s father, Seamus Cunningham (82), was diagnosed with Alzheimer’s eight years ago and has attended The ASI’s Rose Cottage day care centre in Dublin since his diagnosis.
“The lockdown has proved very challenging for my dad and for us as a family. He had no concept of the word virus and so could not understand why he could not go out. Dad is a sociable man and it caused him great confusion, not seeing friends, neighbours and family. I am worried about the impact it will have on him – he is so used to cocooning now, he just wants to stay in the house.
“Perhaps the most heart breaking aspect of the lockdown is that my brothers could not visit and now Dad struggles to identify them. He has not seen some of them since March and Zoom and technology like that only confuses him. The closure of the day centre was a huge loss and now does not really remember Rose Cottage. The worry for me now, the longer this goes on, is that he might not want to go back at all. He used to be the first person on the bus with his suit on ready to go.
“I fear this time has been lost and we can’t get it back. It is frustrating that I can get my hair, nails and eyes done and yet this vital service is not available for Dad’s social and emotional wellbeing. He went three mornings a week and that gave my Mam a much needed break; she has chronic obstructive pulmonary disease (COPD) and is not long home from a five-week stay in hospital herself. We need the day care centre open as soon as possible – the sooner, the better.”
CEO Gives his Verdict
The Alzheimer Society of Ireland CEO Pat McLoughlin said:
“This research paints a very dark and disturbing picture of the plight and crisis that people with dementia and family carers now face in life after lockdown. While many family carers were struggling to cope prior to COVID-19, this crisis has amplified their difficulties and turned everyday caring into a daily struggle. It is also clear that the health of people with dementia has deteriorated during lockdown.
“In our initial COVID-19 Survey in early April, some carers expressed the fear that they would be forgotten in the midst of the crisis. It is so obvious from reading this report that this fear has been realised as they and those they care for have been rendered invisible throughout this pandemic. Our research findings show that living in lockdown has taken an enormous toll on the wellbeing and mental health of family carers, a toll that has intensified as COVID-19 restrictions on dementia-specific services have continued despite other lockdown restrictions lifting.
“It is clear from this report that face-to-face services, such as day care, must reopen as soon as possible. We are waiting for Government guidelines and information on this. But it is obvious from this report that given the very dark picture of people’s reality that it presents, this wait cannot go on any longer. We are eager to get this process started as soon as possible.