New ASI Research: A Year of Caring & Coping with Dementia in COVID-19
About Our Research
New research (June 2021) carried out by our Research and Policy team highlights the experiences of people with dementia and their families as they surpass one year of lockdowns and service closures.
In this research, we found that the pandemic has led to a significant and irreversible deterioration in the condition of many people living with dementia with their world becoming smaller and more frightening.
The report brings to light the enormous challenges faced by the family carers of people living with dementia – and the urgent need for access to support services. It found family carers to be at breaking point – with their mental and physical wellbeing seriously affected.
- 81% of respondents were concerned about a decline in the person with dementia
- 54% of family carers reported a decline in their mental health, and 40% a decline in their physical health
- 54% of family carers were worried about how they will continue to cope, with 44% feeling less able to cope
- 28% of family carers reported considering a move to long term care for the person with dementia, with 65% saying that this has become a consideration sooner due to the pandemic.
The report comprised telephone and online surveys and focus groups including people living with dementia, family carers, Dementia Advisers and front-line service managers – and follows earlier surveys by The ASI in 2020.
Our CEO Gives his Verdict
The Alzheimer Society of Ireland CEO Pat McLoughlin said the lives of people with dementia and their family carers remain very seriously impacted by the pandemic period.
“This research shows 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 roll out has left these people feeling abandoned. There were even cases of suicide risk reported among family carers.
“In parallel many people living with dementia have experienced irreversible deterioration over the past year. These families feel angry, betrayed and frustrated and we need the Government to take additional measures to address their needs.
“We now need to see urgent and safe re-opening of day care 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.”
Life During Covid-19 - Carers' Views
Paul T Wickham, pictured, is a carer for his mother, Mary
My Mam, Mary, has dementia. I work as a nurse and care for Mam as well as I live near her. Even though I have a lot of experience of working with people with dementia, it was different when your own mother is diagnosed with mid-stage Alzheimer’s.
Mam, who was living alone following Dad’s death, fell in April 2020 and broke her hip. We could not visit her in hospital. The Alzheimer Society of Ireland’s family carers course was very supportive at that distressing stage.
Mam recovered well, thank God, but needed full-time care due to her falls risk.
The follow-up ASI online support group was very helpful. I got Covid myself at work and it took a while to recover over the summer. Mam fell again badly in June.
The drama of caring during Covid-19 was really helped by the support of ASI. The Helpline and Dementia Advisor Service were also both very helpful to deal with family dynamics about getting care organised for Mam.
I had a lot to learn and I can’t praise The ASI enough for being there when we needed them. Now I am doing the Later Stage ASI online course as Mam is slowly declining. This course is also very helpful and enlightening.
Catherine Gorman is a carer for her Mother, Ettie, pictured
Where were you when the then Taoiseach Leo Varadkar made that speech on Thursday morning, 12th March 2020? It was a history-making moment as the reality of Covid-19 entered our world and things would never be the same. Five of us were in the office that morning when we began a new way of living; a new way of seeing the world and a new way of relating to each other.
Further restrictions were announced two weeks later, advising us to work from home where possible, led to even less sleep than normal. The fear of bringing Covid 19 home from work to my then 100-year-old mother got between me and my sleep. I had been working part-time since 2018 and really needed to hold on to my job.
Several conversations later I got set up to work from home, for which I am very grateful.
A bit of a back story on my mother, Ettie (Elizabeth). In 2017 prior to Mam’s 98th birthday, instead of taking our annual flight directly to Tarbes, France, we travelled through France in a campervan to get to her beloved Lourdes. That’s how adventurous Mam always has been. In her 70s she said ‘I suppose I should give up the idea of going in a parachute.’
I didn’t know much about tandem jumps then, nor had I heard of 70-plus year-olds parachuting (unlike now – see Google!). Mam has always been ready to ‘get out and about’. She loves the open road – years ago she said that ‘when she was older and the family was settled’ she’d get herself a dog and travel the roads. While this was more of a romantic dream than anything else, it’s a measure of her being ready for any adventure.
I say this because while everyone was walking their 2km or 5kms circuit during lockdowns over the past year or so, Mam only left the house twice in 2020. In April, we went by ambulance to the Mater Hospital where Mam was admitted for a week’s stay (after we spent 25 hours in A&E) and in October 2020 we went to the chemist for her flu injection.
Visits from family were just not possible and our regular trips out no longer part of her world. We were fortunate in the carers who still came daily to look after mam. They were her only other daily contacts beside me. For a time during the summer when restrictions lifted, friends who live locally called and we all sat outside, weather permitting. By October, Mam needed more assistance for physical needs and a hospital bed, hoist and comfort armchair became part of our furniture.
For Mam’s 101st birthday in November 2020, family and friends called to the window – thankfully the weather was kind minus 2nd bracket. A party bag with buns (made while wearing disposable gloves) and a reusable mask with ‘Ettie is 101!’ in discreet lettering on the corner was given to every guest. Mam was always au fait with fashion trends, so a mask seemed the most appropriate momento!
It’s difficult to tell how much the social restrictions have affected Mam’s dementia. I introduced a Reborn Baby doll to Mam years ago and she said ‘it’s a lovely doll isn’t it? ‘The Baby’ is now a daily companion and loved as her own child – hugged, kissed, sung and spoken to constantly. We are blessed with friends and family and carers who keep us both going, but there is no doubt that Covid-19 has presented us with some really big challenges.
Aisling Harmon, pictured, from Wicklow cares for her Mum
“My Mum has advanced Parkinson’s Disease and Dementia. Her needs could not be put on hold, but our day-care 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.”
Supporting People with Dementia and Families 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 Services prior to COVID-19
- Social Calls and Activity Engagement Calls (with Activity packs) on a weekly or biweekly basis
- New Digital/Remote Services including Alternative Activity Therapy, Social Calls, Online Alzheimer Cafes, and online support groups for Family Carers.
- Day Care at Home service providing in-home activities and social stimulation for people living with dementia and their family carers who availed of Day Centre Services prior to COVID-19
More information on how we have supported and represented our people during COVID-19 HERE