Dementia and Covid-19: Facing the challenge together

Quarantine can be a challenging time for those living with dementia and their families. The constant presence of the same questions and answers, behavioural changes and other daily difficulties add to the anxiety already experienced due to the constant bombing of news. Since the beginning of social distancing practices, the routines of people with dementia have suffered a great blow. Cognitive stimulation is reduced, physical activities and walks are suspended, caregivers may be feeling alone, anxious and depressed. Support for people with dementia may be interrupted at different levels. They may be unable to attend  emotional support groups or in routine medical appointments, increasing insecurity and fear of the unknown for all of us.

Many assistive strategies moved to online platforms through mobile applications, social media, virtual groups and doctors and psychologists providing free phone lines for questions and guidance related to the impact between dementia and coronavirus. The Alzheimer Europe Board, along with other European organizations, has released recommendations to promote the well-being of family members and professionals undergoing social isolation required for prevention during the COVID-19 pandemic.

“I am amazed at how quickly Alzheimer’s associations [in Europe] and health and social care professionals have responded to the COVID-19 challenge and continue to provide essential information, support and assistance to people with dementia and their caregivers. They deserve the full support of national governments and I hope our recommendations will provide some guidance on how to promote the well-being of people with dementia and carers in these difficult times,” complimented Jean Georges, executive director of Alzheimer Europe.

This is a time to encourage creativity among caregivers and family members of those living with dementia, which can sometimes seem like a “shot in the dark”. We must first understand the challenges and emotions shared by the caregiver and the person with dementia in times of quarantine, in order to come up with a strategy focused on that house, that person and that family.

The challenges of the person with dementia:

Different stages and types of dementias will bring particular challenges. During quarantine, anxiety, sleep disorders, mood changes and behavioural problems may be intensified in people with dementia in reponse to disruptions in their dailyroutineand busy households, with children running around and family members working from home.

Even without a full understanding of the situation, reports on TV about the critical state of countries and conversations about death toll and fear of the current situation may lead to emotional stress and behavioural changes such as aggressiveness. Such behaviour is mostly a way to communicate physical or emotional discomfort, but this may not necessarily be verbalized.

It is essential that family members and caregivers acknowledge the difficulties for a person with dementia to understand the current situation. People with dementia may want to walk outside, visit family members, change their surroundings and the impossibility of this may cause some conflict among family members. We must understand and accept the limitations brought on by dementia itself, even before developing management strategies for this reality. The “home” at that moment may not mean security for the person with dementia, the explanation of “social isolation” may be confusing and not make sense, and the expectation of family members  must be adjustedto accommodate these limitations.

Protective equipment such as masks, gloves and aprons may be necessary to safeguard the health of people in vulnerable groups, especially people with dementia. However, masks cover our mouthes and may make it hard to understand the emotions communicated by family members. As humans, we communicate through words and expressions from our body and face. When our faces are covered up, it can confuse the person with dementia and trigger negative emotions such as insecurity.

We must remember that isolation is physical, not emotional or social. To ensure this, family members can use social networks and video calls to keep connecting the members inside the house with the external world, which promotes  cognitive and social stimulation through an efficient interface.

 The challenges of the caregiver:

Caring for a family member with dementia can be a very challenging situation in itself, and during the Covid-19 crisis, many of these challenges are exaserbated. The breakdown of support and care settings can negatively effect the caregiver’s mood, the way we communicate and our tolerance for repetition of daily life.

Spending more time together without breaks and with the constant worry of  a possible infection, may leave family members tense and under pressure to notcarry danger from outside in. It may be helpful to ask friends and family from outside your inner circle to support you in carrying out tasks that would expose the person with dementia to greater risk of infection, such as going to the shops or disposing of waste.

Older adults often care for one another, and some support may be needed from outside such as professional caregivers to help with the person with dementia or with the house. This pendulous movement of people in and out of the house should be evaluated according to the needs of the family when considering if this should continue.

Finally, although we are set apart, we are all in this together. This is a great challenge, and requires everyone’s help. This story will be told for many years after, but for now just stay at home and protect yourself and the healthcare services.

Fernando Aguzzoli is a Brazilian journalist and Atlantic Fellows for Equity in Brain Health at the Global Brain Health Institute in Trinity College Dublin. He is also a member of the Brazillian Geriatric and Gerontology Society, a director-member of Brazillian Alzheimer Association and author of a series of books addressing Alzheimer’s Disease, vulnerability, aging, death, and other relevant subjects, aimed at both adults and children.

Fernando