As consequence of COVID-19, ADI members around the world have spent the last year and a half readapting and rethinking, as well as innovating new ways, to support people living with dementia, as well as their carers, family members and communities.
COVID-19 is disproportionately impacting people with dementia and their families, with some heart breaking mortality figures emerging. In Canada, 85% of all COVID deaths have been in long-term care, where two thirds of people have dementia. In Australia, 41% of COVID-19 deaths have been people living with dementia, while 26% in the UK and 20% in regions of Italy respectively. More governments must publish data on dementia-COVID mortality as a matter of urgency.
In the United Arab Emirates, Desirée Vlekken, founder of ADI member 4get-me-not responded to the escalating COVID-19 crisis in Dubai by launching a grief support group for older people and carers affected by the loss of their loved ones during the pandemic.
The need to heal and grieve
The idea for the support group came to Desirée during the first wave of COVID-19 and as 4get-me-not was beginning to see many of the seniors and carers involved within the organisation affected by the loss of a loved one. During various online sessions and discussions, someone from the group would often volunteer a story that involved a husband, wife or child that they had lost.
Desirée says: “It’s hard not to miss the signs that most of our senior participants are still unable to move past the pain, somewhere in grief. I have always felt the necessity to initiate a safe place for them to grieve. Because that’s where we often fall short. Where is their grief allowed to happen? At home? Is there always a place even amongst our closest family and dearest friends to feel validated and understood? With Chocoholics, they can connect and share stories with a friendly, caring group of people who have also experienced grief and understand loss.”
As Desiree continued to think about the idea of a grief support group, she soon experienced her own personal loss: the passing of her father, 79, in January 2021 due to complications from pneumonia and Alzheimer’s disease. She quickly realised the importance of a safe environment where people who were grieving like herself could talk about what was happening and how they were coping with the loss.
People who are grieving, like myself, can feel detached and this needs to be addressed and enable us to be functional again.
Chocoholics: Life is sticky but sweet
With COVID-19 cases and waves having continued since the first global outbreak in the beginning of 2021, many people around the world have found themselves unable to traditionally grieve due to ongoing restrictions. For this reason, it was important that the 4get-me-not grief support group encouraged an environment which Desiree says was “sweet and safe” and allowed members in attendance to share, connect and heal.
Inspired by the benefits of dark chocolate, which some studies have shown it to help aid memory, blood pressure and cardiovascular health, as well as improve mood and alleviate depression, 4get-me-not decided to call the grief support group ‘Chocoholics – Life is sticky sweet but sweet’.
Each monthly session begins with members drinking a cup of hot chocolate, which sets the mood for an environment which is safe, caring and comforting. Members of the support group then spend the next two-and-a-half to three hours sharing their stories and listening to stories. By the end of the session, members are encouraged to create a one page collage with a photo of their loved one, which contains plenty of colour and special messages. The collages are then collected, filed and stored in the Chocoholics Time Capsule. The Chocoholics time capsule, a keepsake box, will be opened next year on 12 April, the first anniversary of the group.
Dorothy Gomez, 82 and a member of Chocoholics, says: “Thanks to the Chocoholics, each of us have been able to share memories and expressions of our grief with each other. It is a cathartic experience.”
The Chocoholics have had 7 meetings since the launch of the initiative in early April. As the group has grown, so has the growing support from the general community. Some sessions have hosted guest speakers with expertise in the fields of art, sound, meditation and laugh therapy, while other people have volunteered their time and expertise for future meetings. Corporate businesses have also reached out, offering the use of their meeting rooms for in-person sessions.
Sadly, a week after the first meeting of Chocoholics, Desirée lost her mother to COVID-19. Like with her father’s passing earlier in the year, she was unable to travel to Manila for their funerals due to COVID-19 restrictions.
Desirée says: “It was just a few months ago that I lost both my parents. Travel restrictions prevented me to be present for their funerals. By initiating Chocoholics, I found the possibility of closure not only for the participants but also for myself. Our ‘journaling’ exercise and reading sessions to the group allowed us to untangle confusing thoughts, honour and continue our conversation with loved ones.”
Together we are creating a roadmap to figure out what our new life looks after experiencing loss. Most of us are still stuck but at least now we have small but solid and honest steps to move forward.
The group intends to continue hosting at least 2 sessions per month until the end of 2021, with the idea of continuing into next year and the ongoing future.
Kim Smith, 60 and a member of Chocoholics, says: “I believe in Desiree’s insight in forming the Chocoholics, which created a pathway for us all. We each have a journey to travel but together is better than alone”.
Learn more about 4get-me-not and the Chocoholics support group.
Summer Chillout 2021 – Global concert
On 7 August 2021, 4get-me-not, alongside The Gulf Youth Chamber Music Society (GYCMS), will host its first ever virtual global concert to celebrate the organisation’s eighth anniversary and support the Chocoholics initiative. The event, ‘Annual Summer Chillout 2021 Global Concert’, will be made up of 17 young musicians from around the world, including previous volunteers of 4get-me-not and a special performance by a guest violinist from the Juilliard School of Music in New York.
According to the press release: “The concert will offer support to the ongoing community initiative ‘Chocoholics’ Grief Support Group for seniors and caregivers who are extremely affected by the loss of their loved ones especially during the pandemic. This concert is a collaborative effort by 4get-me-not Alzheimer’s and The Gulf Youth Chamber Music Society”.
Learn more about the event, including ticket availability and time.