Carers of people with dementia feel abandoned

The Covid-19 pandemic has led to a “significant and irreversible deterioration” in the condition of many people living with dementia, and this has placed enormous strain on those caring for them, the Alzheimer Society of Ireland has warned.

It has published a new report which highlights the many challenges faced by the family carers of people with dementia.

According to the report, 81% of carers were concerned about a decline in the person with dementia. However, 54% also reported a decline in their own mental health, while 40% reported a decline in their own physical health.

Some 54% worried about how they would continue to cope, while 28% said that they were considering moving their loved one to long-term care. The majority of those considering such a move said that this had been accelerated by the pandemic.

According to the CEO of the Alzheimer Society, Pat McLoughlin, these findings show “the enormous sacrifices family carers have made in order to protect those they care for”.

“Their struggles include heightened exhaustion, burnout, anxiety, grief, helplessness and despair. Other relationships and responsibilities, such as children or work, have also paid a price. The fact that there was no prioritisation of family carers in the vaccine rollout has left these people feeling abandoned. There were even cases of suicide risk reported among family carers,” he noted.

Mr McLoughlin said that families feel “angry, betrayed and frustrated” and he called on the Government to address their needs.

“We now need to see urgent and safe re-opening of daycare centres and social clubs. Our research found that family carers’ need for practical support almost tripled in the past year, rising to 70%. They also need access to emotional support, including counselling services,” he insisted.

Aisling Harmon’s mother has advanced Parkinson’s disease and dementia. She explained that despite her mother’s extensive needs, her daycare and community services “were cut off overnight”.

“There was no emergency or contingency plan to fall back on. The world went online, but homecare couldn't. My part-time caring went 24/7, without subsidy or alternative support.

“We are so vulnerable and have been left unprotected. Vaccines get rolled out, but carers were at the back of the queue. Everyone is focused on getting back to normal. My new norm is more of the same, only with less supports than before. It still feels like carers are invisible and have no voice,” Ms Harmon said.

The report is based on the findings of national research carried out in February and March, 2021. It included telephone and online surveys with 240 family carers and 17 people living with dementia. Dementia advisors and frontline service managers also took part.

The report, Caring and Coping with Dementia During Covid-19, can be viewed here.