Dementia Scientific Panel Report – COVID-19

During the Covid-19 pandemic, most European countries have imposed personal restrictions on their populations in order to inhibit viral transmission and spread of infection. The hardest restriction concerns the imposition not to leave home unless to go to the supermarket, to the pharmacy, or to work activities that are considered strategic for the country. Social distancing has also been recommended across Europe.

In this scenario, people affected with dementia and related conditions as well as their relatives are especially vulnerable and are suffering these limitations more than most other people. Essentially:

1. The day care facilities for persons with dementia still living at home have been closed; their relatives are often at home and may not be able to visit due to restrictions and formal caregivers also be restricted. For live-in relatives and patients to stay together at home for long periods of time without the usual help or respite may trigger behavioral disturbances in patients and/or inappropriate behaviours in relatives. Communication may also suffer.
2. Healthcare residences have been locked down and family members cannot visit patients which can generate anxiety and a sense of abandonment in patients, with depression and, again, behavioral disturbances.
3. Both in i) and ii), patients with cognitive disturbances may manifest psychomotor agitation that risks leading to increased use of sedative drugs and anti-psychotics.
4. Patients with dementia may have difficulty in reporting symptoms properly or may refuse therapy due to lack of insight and may be more exposed to inappropriate care because health care services are overwhelmed by patients with COVID-19 infection and personnel are often burned-out.  Delirium, that is frequent in hospitalized dementia patients, is often brought on by infection with fever, pneumonia and hypoxia.
5. People with dementia might not cope sufficiently with safeguarding measures, such as wearing masks and washing hands, which could expose them to higher chance of infection.
6. Persons with dementia living alone may be especially vulnerable.

In the following, the EAN Management group on Dementia and Cognitive Disorders suggests some actions to be put in place that might help patient management. Guidance may be relevant for professional caregivers as well as family caregivers.

1. For patients isolated at home, walking within a radius of about 200 meters from the home may help to prevent behavioral disturbances. Local authorities may be petitioned for approval if lock-downs prohibiting this are in place. In any case, try to avoid or minimize increase of sedative dosage. The following measures may be helpful:

• Photographs (old photos and objects from the past, rearranging them, may help to recover the memory of personal experiences);

• Objects and old newspaper clippings (collecting them may help the person to retrieve the name of the objects and related facts);

• Old songs (useful for arousing emotions and memories);

• Movement/exercise (the person could walk in the wider spaces of the apartment or house or, if possible, on the terrace. Simple exercises, such as getting up and sitting down from the chair or other at-home exercises are also encouraged);

• Various activities (The person with dementia can be involved in activities such as mending, cleaning, arranging drawers, hand washing small linen, folding towels);

• Keeping a regular schedule (routine is critical for people with dementia);

• Appropriate lighting for the given time of the day. Avoid areas of shade or penumbra, which often generate agitation. A night light is recommended in the bedroom; an illuminated corner in the living room;

• Leisure and pastimes (for example, cooking together);

• Sunset syndrome (going out on the landing or in the courtyard helps to restore orientation; ascending a flight of stairs can be useful to distract and exercise. It is preferable to go up on foot and go down in an elevator);

• Hygienic-sanitary rules (Hand washing and disinfection of rooms is fundamental). Guidance with regards to hand washing may also be necessary;

• Extra focus on symptoms of infection as persons with dementia may not report these (caregivers may ask the person with dementia whether they have pain (point to the part of the body in question) or otherwise whether the person is in discomfort);

• Relatives not living with the patient can keep in touch via telephone or video calls (computer, tablet, mobile);         

• Explain the COVID-19 epidemic in a way that takes the patients´ cognitive impairment into account. Use terms that are directly relatable to the patient (e.g. “I am using a mask to avoid infecting you”);

• Be mindful that persons with dementia may have difficulty understanding information from media or caregivers in terms of their own situation (e.g. they may mistake conditions in other countries with those in their own country).

2. For patients locked-down in retirement home:

• Use of telephone at regular interval/hours (preferably the same few persons to avoid confusion);

• Be mindful that social isolation is difficult for any person but may worsen symptoms of dementia. Therefore try to talk to patients regularly;

• If available, send pictures and use video-calls though smartphones. Be calm and smile during calls; take your time. Few calls with calm are better than more hasty calls; 

• Try to calibrate explanation about the reasons of the sudden detachment on the degree of cognitive impairment in order to avoid misunderstanding. Take care not to transmit your anxiety;

• Extra focus on symptoms of infection as persons with dementia may not report these (caregivers may ask the person with dementia whether they have pain (point to the part of the body in question) or otherwise in discomfort);

• If possible and depending on local restrictions, maintain group activities in small groups (e.g. exercise, watching TV) and meal times (eat in turns);

3. For in-hospital patients:

• Be aware that health care services may be overburdened. However, do not hesitate in seeking medical assistance if necessary;

• Try to understand from hospital staff how and when to get information on his/her status without being intrusive; this is generally well accepted;

• Use strategies as in the first two points under 2.

Other useful information can be accessed through

• the Lancet at https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30755-8/fulltext

• Alzheimer Europe at https://www.alzheimer-europe.org/Living-with-dementia/COVID-19

• Alzheimer Association at https://www.alz.org/help-support/caregiving/coronavirus-(covid-19)-tips-for-dementia-care

• Alzheimer’s Society at https://www.alzheimers.org.uk/get-support/coronavirus-covid-19

• USA Center for Disease Control and Prevention at https://www.cdc.gov/aging/covid19-guidance.html

• and at National Health Ministry website in local languages.

On behalf of the Management Group of the EAN Dementia panel

Flavio Nobili, co-chair
Dept of Neuroscience (DINOGMI), University of Genoa (I)
IRCCS Ospedale Policlinico San Martino, Genoa (I)

And

Kristian Steen Frederiksen, co-chair
Department of Neurology, Danish Dementia Research Centre,
Rigshospitalet, University of Copenhagen (DK)