Caring for the elderly with dementia, during the COVID-19 pandemic

In the present health crisis caused by COVID-19, the elderly—especially those living with dementia and other cognitive disorders—are more vulnerable. They are likely to face experiences that are difficult and unfamiliar, that may bring about a change in their behavioural responses. This in turn, might lead to an increase in their caregivers' stress levels, making caring quite difficult and challenging.

Providing psychological first aid—to people living with dementia and their carers—is the first step toward supporting them, right now. Paying attention to their concerns, and providing comfort to those who may have been in contact with a person who has tested positive, is crucial. They need to know that they are not alone in this.

Being aware of the possible challenges 

In quarantine 

• A person with dementia, who is staying at home during quarantine, may be confused by the interruption of their normal routine. They may not recognize the necessity of following preventive measures. Communicating information about handwashing, not touching your face, is difficult when the other person has dementia. 

• Such a situation may lead to the elderly person experiencing confusion and restlessness; feeling agitated; sleeping poorly; and wandering. 

• Due to the danger of contracting the virus, the paid caregiver with whom they are familiar and comfortable, may not be able to come in to assist them.

• A person living at an assisted living facility can also be affected—a lockdown prevents routine group activities, reduces contact with family members, and minimises access to routine clinical services.  

In case of infection

• In the event of any person with dementia developing COVID-19, the symptoms of fever, sore throat may not be recognised or communicated, causing a delay in diagnosis. Here, it is likely that the infection manifests in the form of signs that are not seen regularly—dullness, apathy, agitation, refusal to eat and other behavioural changes. 

• Here, isolation can be difficult, since they may not understand the reason for being kept apart from the people they live with.

Ways in which to reduce the impact of the crisis

1. Continue with regular, routine medications, particularly in case of those who have conditions like diabetes, hypertension, thyroid issues.

2. Persons with dementia and their carers must postpone their routine follow-up appointments, unless it is an emergency case.

3. Going to the hospital only in the event of an emergency minimizes risk of exposure to unnecessary infections. When there is an urgent need for medical attention, contact your nearest government hospital, or your local physician who will be able to assist you.

4. Persons with early dementia can be encouraged, frequently prompted and reminded, to maintain physical distance from others and to wash hands.

5. Access support for persons with dementia and their caregivers, through virtual platforms, or telephonic calls to the physician.

6. Persons with dementia and their carers should continue to carry out basic physical exercises and relaxation techniques.

7. In response to signs of stress: Carers must use positive and simple communication techniques, to initiate activities, provide daily encouragement and reassurance.

8. Engage in video/telephonic conversation with family and friends, seeking their  community support. Recreate interest in music or art, or any other hobbies. Making their immediate environment more soothing can help address certain behavioral issues.

9. If the person with dementia requires isolation, create a special space for them—adjust the lighting, play soothing music, and ask the caregiver in-charge to communicate with them in simple language. Carers must listen to the person with dementia, attend to their feelings, and validate their emotional experience.

10. In addition to safety measures, the living facilities’ staff ( if in an assisted living facility) must make the effort to make the individual feel less anxious and insecure.

11. Caregivers at home must distribute the work equally between themselves, to make sure that there’s time to rest for each person involved. This is especially important given their current responsibilities and heightened stress. Rotate caregivers at home, so as to provide respite for each caregiver; this is crucial due to their responsibilities and heightened  stress.

Maintaining continuity of care

Irrespective of whether this is in the context of assisted living, or caregiving at home, continuity of care involves ensuring the safety of the person with dementia and their carers. It’s useful to keep a checklist of the key points to this end: - Keep stock of essential medications, and have an emergency contact ready.

• Follow mental health and psychological support strategies. 

• Continue with the daily routine as best as possible.

• Engage with online self- help groups for psychological support. 

You can also connect with associations,  like the local chapter of Alzheimer’s and Related Disorders Society of India (ARDSI) in your city.   

Effects of the lockdown and isolation 

The effects of the nation-wide lockdown are more universal in nature, as opposed to affecting a specific set of select individuals. The risk levels of contracting COVID-19 varies among people living with dementia. It depends on their place of stay and susceptibility to the infection. Due to the range of new challenges that may emerge, it's important to be informed, seek the support of medical professionals, and know what resources are available.

To learn more about how you can best support your loved ones, or, seek help for related concerns, you can contact the NIMHANS Cognitive Disorders Clinic, Bangalore—call +91 9686248282, or write to them on  dementia.nimhans@gmail.com.

These guidelines were developed by the NIMHANS Cognitive Disorder Clinic, in collaboration with the Centre for Public Health, and AADAR Dementia Science Program, NIMHANS.