Concern over impact of lockdown on dementia

Deterioration of symptoms and carers struggling
  • Deborah Condon

The COVID-19 pandemic has had a major impact on people with dementia and their carers, the Alzheimer Society of Ireland has warned.

According to a new report it has just published, Caring and Coping with Dementia During COVID-19, the withdrawal of vital dementia-specific supports and services in recent months has led to an increase in cases of major stress, anxiety and burnout in homes affected by dementia.

The report highlights that carers are under immense pressure, due to extra workloads, constant anxiety and exhaustion. Many of these carers have also seen a major deterioration in the health and wellbeing of those they are caring for.

Some 86% of carers said they were concerned about a decline in their loved one, while 58% of people with dementia said they felt "lonely", "isolated", "trapped" and "confined".

The society highlighted that there appears to be no end in sight to the restrictions imposed on dementia-specific services. It pointed out that it produced a similar report earlier on in the lockdown, in which people wondered whether those with dementia would be forgotten.

"It turns out they were right," the society said.

Some 77% of carers said that their workload has increased during the pandemic, however many feel unable to reach out to family members for help at this time. Furthermore, there is currently no information or guidelines on a roadmap for reopening vital services, such as day care and support groups for loved ones.

Denise Monahan (56) from Tallaght in Dublin is a full-time carer to her father, Seamus Cunningham (82), who was diagnosed with Alzheimer's disease eight years. Seamus had been attending the society'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," Ms Monaghan explained.

She said that the closure of the day centre was a "huge loss" and her father does not really remember it anymore.

"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," she noted.

According to the society's report, the lack of certainty about the reopening of services is a source of ongoing concern for families. Carers can see no end to this and as a result, they are feeling hopeless.

The report also pointed out that many callers to the society's national helpline have said they are surprised and upset by the rapid and sudden progression of their loved ones' symptoms during the pandemic.

Some symptoms are particularly problematic, such as aggression, paranoia and hallucinations.

The ASI has made a number of key recommendations in the report, including:
-The need for guidelines for the reopening of services and supports for people with dementia and family carers as a matter of urgency
-The need to support family carers who have shouldered a disproportionate burden during this global pandemic
-The immediate implementation of enhanced in-home support that caters specifically for people with dementia.

"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," commented the society's CEO, Pat McLoughlin.

According to Ana Dalton, who works as a dementia advisor for the society in north Dublin, since the pandemic began, she has received an increase in calls from family carers who are experiencing burnout.

"COVID-19 further exacerbated the feelings of physical and mental exhaustion and social isolation for many family carers who need and should have access to a solid structure of support services to enable them to sustain their demanding care roles.

"But the closure of vital services, such as day care and respite care, and the ongoing limitations within home care, means carers just can't get a break now," she said.

The pressure on carers was also highlighted by Amy Murphy, a dementia advisor in the southern region. She pointed out that supports and services are "essential for the person with dementia to manage their condition properly".

She said that the closure of these services, while necessary at the time, have contributed to a "rapid progression of the disease for many".

"In my area, I have had people ring me in tears at the situation they're currently in and I am extremely alarmed at witnessing such deterioration in people's dementia during lockdown.

"From the daily calls that I am receiving, they are missing the human connection that face-to-face services provide. It's very clear from this report that, due to the lack of multi-sensory stimulation, routine and interaction over a period of time, the impact of the lockdown on people with dementia could be a lasting one," she warned.

The report can be viewed here. For more information on dementia and COVID-19, click here.


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