Covid-19 pandemic has presented unprecedented threat especially to the elderly suffering from neurological disorders like Alzheimer’s. There is an additional burden of stigma, abuse, ageism, financial impoverishment, loneliness attached to dementia. Disruption of nonessential healthcare services like closure of Daycare centre due to fear of infection affected the treatment and care of the Alzheimer’s patients. A delay of few weeks to months may prove critical for people living with dementia. Especially an early diagnosis window of opportunity is lost.
Persons living with Dementia find it harder to comply with social distancing, usage of mask, gloves or sanitisation. The difficulty in comprehension of the above information manifests as agitation, restlessness, aggression and other problematic behavioural symptoms. Some older adults with dementia are often frail, with impaired mobility, respiratory reflexes are at a high risk of infection and mortality. As a result the caregivers role has become more challenging as dementia patients may not learn properly the use personal protection elements, such as wearing facial masks, washing hands, and keeping social distance and complying with other safeguarding procedures .
These patients are likely to experience additional distress owing to absence of relatives, friends and neighbours who would normally visit them. There is also a strict limitations of social activities such as going for a walk, visit to a place of worship, going for a holiday or shopping which they did on regular basis. This social isolation is linked to more confusion in the patients with Dementia and may result in greater agitation and aggression as well as other unexplained behaviour.
Before pandemic engaging in social activities, preforming cognitive and physical activities and having productive daily routine had been the mainstay therapy. But now and during Pandemic lockdown all that reversed and strict social isolation had to be observed along with other quarantine guidelines. We encourage providing interaction with loved ones, friends and pets on digital services like zoom, FaceTime to the people living with dementia. Also most religious places are zooming their daily prayer services on digital platforms like YouTube which can be easily watched at their convenience. All the above activities increases the “contact time” for people living with dementia. This will help in improving the behaviour issues in the patient and reducing the stress on the caregivers.
As a precaution Vaccinations for all Dementia patients, their prime caregivers as well as family members is recommended. This would give them a good protection from infection. Visitors to the patient should also be vaccinated. They should be wearing a mask for the entire duration of the visit. The place where the visitation is held should be well ventilated preferably outdoors. If the visitor has been exposed to anyone with the virus prior to 14 days , then postpone the visit. Inform the family member immediately if the visitor develops a fever or symptoms consistent with Covid 19 within 14 days of the visit. Check the temperature of the visitor or the caregiver before they enter the home. Ensure that they wash their hands upon arrival and regularly throughout the time they are with the patient. The caregivers as well as the visitors should be made aware that information delivery to people living with dementia must be preformed slowly with frequent pauses, in short simple sentences preferably with the use of audio visual aids.
During highly contagious stage of pandemic we advise the family that there is always a possibility that the caregiver might himself/ herself get infected with the pandemic and is unable to provide required support. Alternate sources of care including friends, relatives or volunteers need to be planned and prepared in advance. Since Dementia care in India is delivered mostly by informal caregivers usually family and women ( wife, daughter, daughter in law, sister) there is an increased burnout strain on them during pandemic due to higher dependency needs.
During and after the pandemic caregiver support is essential. Our team of counsellors at Alzheimer’s Related Disorders Society of India -Delhi Chapter have continuously provided that extra support to the families of dementia patients through tele- counselling and video consultation. We wish to resume our Day care services as early as possible with due precautions and integration with tele- medication to reduce the delay in early diagnosis and care.
The article has been compiled by Renu Vohra, Member Secretary, Alzheimer’s Related Disorders Society of India, Delhi Chapter.