18 May 2022

Harrowing accounts of life in lockdown reveal sharp deterioration in people with dementia

Harrowing accounts of life in lockdown reveal sharp deterioration in people with dementia

Sharp deterioration in health of people with dementia as vital services remain closed

New research carried out by The Alzheimer Society of Ireland (ASI) 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 by The ASI 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. In the first report, people wondered would people with dementia be forgotten and it turns out they were right. 

The report 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. This situation is being made all the more unbearable as there is currently no information or guidelines on a roadmap for reopening vital services such as day care, alzheimer cafes and support groups for their loved ones.

The report reveals worrying long-term implications of the lockdown including significant concerns about the future, with 75% of respondents with dementia concerned about a decline in their mental health and 61% of family carers also being concerned for their own mental health.

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," says Denise.

"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 heartbreaking 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 he 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.”

The lack of certainty around reopening of services is a source of ongoing frustration and angst as it means there is no end in sight to carers’ stress and workload, thereby leading to feelings of desperation and hopelessness. 41% of carers and 50% of respondents with dementia are worried about when normal dementia services will resume. Respondents with dementia miss socialising with friends.  

In the report, callers to The ASI’s national helpline also echo concerns about progression in the person’s symptoms, which has been a significant issue since the temporary closure of services. Callers express confusion, upset and surprise by the rapid and sudden progression of their loved ones’ symptoms over recent weeks and months.

Nearly 40% of helpline callers are not linked with any ASI service currently, which highlights how much of a lifeline this vital service is for people. The ASI’s helpline also reports increased challenges for callers including anxiety, insomnia, paranoia, aggression and hallucinations.

In addition, dementia advisers are deeply alarmed about the quickened deterioration in symptoms, as reported to them by family carers. Inherent in carers’ experiences is a sense of grief and powerlessness, “watching the change on a daily basis” as they watch their loved one's symptoms deteriorate. This comes in addition to a reported tremendously increased workload and carers often being alone as they are unable to reach out to family members during this time.

The ASI is calling for the following key recommendations in the report:

  • Need for guidelines for reopening of services and supports for people with dementia and family carers as a matter of urgency.
  • Dementia should be included specifically in data collection relating to Covid-19 mortality or public messaging.
  • Need to support family carers who have shouldered a disproportionate burden during this global pandemic.
  • Enhanced in-home support that caters specifically for people with dementia should be implemented immediately.

The ASI has submitted proposals to expand home care support and the safe reopening of day services to the HSE, which are under active consideration.

The ASI has continued to support people with dementia and their families as its home care, dementia advisers, national helpline and online family carer training have remained open.

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