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Dementia During Covid


  • Covid is transmitted between humans through the respiratory tract

    • It travels in saliva, mucus, and possibly eye conjunctiva

    • Once inside the body, the virus takes over and replicates fast

  • It is believed that animals do not transmit the virus to humans

  • The virus is most frequently spread by face to face transmission or hand to face transmission after touching a surface with active virus and then touching the face

  • It is variable in how it affects each person; asymptomatic to deadly

    • Those that are asymptomatic are super-spreaders because they don’t know they have it

  • People living with dementia who have the APOE4 allele are more vulnerable to se

    • Risk of death if they have Covid rises


  • It has the potential to live on hard surfaces for 3-9 days if not eliminated

    • The virus is vulnerable to soap and water, ethanol or alcohol, bleach, and hydrogen peroxide. It breaks the boundaries of Covid and kills it

    • The virus is only able to stay ‘alive’ on uncleaned surfaces for a limited period of time, but dies fastest with help.


  • 7.2 million cases in the U.S.

    • 206,000 died as of the end of September with 30-40% of those being long term care residents

    • State death rates have varied widely

  • 3-5.2% of people getting Covid die in the general population

    • 1% of people getting the flu die because Covid is more unpredictable

    • 231,957 confirmed cases in long term care residents

    • 136,259 additional suspected cases in long term care residents

    • 368,216 total cases in long term care residents

    • 55,845 confirmed Covid deaths in long term care residents per CMS data

  • Since mid-March, there have been over 134,000 deaths due to dementia in long term care facilities

    • 13,000 more deaths than last year; that is a 10% increase in dementia related deaths

    • This does not include any people living with dementia who died from Covid


  • Assisted living facilities are not required to report in the same way as nursing homes

    • Covid data is less available for assisted living facilities

    • 19 states record assisted living facilities separately

    • Staff cases are rising

    • Deaths have increased 59% since June


  • During the pandemic, isolation patterns, infection rates for staff and residents, and well-being have varied greatly in skilled nursing facilities

  • Care quality has varied dramatically among locations

  • Secluded units have worked as well, or better, than single room isolation for controlling Covid spread

  • Keeping staff in specific spaces has been found to reduce spread through the facility

  • Proactive staff testing reduces spread. It really reduces the risk of the spread from asymptomatic people

  • When staff is supported, outcomes for all are improved

  • Reimbursement to positive staff so they aren’t trying to play off disease and come to work because they need the money

  • Family members have experienced extreme loss of routines and services


  • Family members have experienced extreme loss of services

  • Those living at home; visitors and caregivers can’t go as much

  • Switch to virtual support not always as adequate. Those with dementia have an even harder time with limited support

  • Most report they are feeling overwhelmed by care when combined with other responsibilities, but also have incredible concern about placement

  • Anxiety over possible infection risk is high; they don’t want lots of extra people in the home such as home health, hospice, caregivers, sitters


  • Depression related to pandemic duration and isolation is becoming common

  • It has risen 10-20%

  • Covid is impacting death rates and changes in well being for many, even if they are not infected by the virus

  • There will be ongoing waves of Covid infections with holidays and gatherings and flu season coming


  • Outside visits are time and resource intensive and impacted by temperature and weather

  • Window visits only work for some

  • Staff risks remain high and staff numbers are down.

    • PTSD on staff due to making choices that could affect their own families

      • Online or telephone visits only help some

  • When we isolate those with dementia to an isolated room:

  • Increased falls and injuries

  • Increased sarcopenia

  • Increased functional losses in abilities

  • Increased dehydration

  • Increased distress during care; less seeing staff and being familiar if stuck isolated in room, less engagement

  • Masks don’t look right to them; scares them, can’t recognize the people they thought they knew and trusted

  • Increased medication use to control anxiety and agitation internationally

  • Decreased participation in activity; people becoming more passive

  • Decreased interactions and language use

  • Intense emotional distress to families

  • Unaddressed grief and loss; can’t be with loved ones; no funerals

  • Not able to hug and offer support to families with loss

  • Stress/ distress; may increase their vulnerability due to immune system impact

  • Sense of imprisonment or isolation

  • Families considering taking on care themselves to protect their loved ones from exposure

  • Staff:

    • Intense emotional distress

    • Unaddressed grief and loss

    • Immune system impact; vulnerability

    • Work productivity loss

    • Sense of imprisonment or isolation

    • Leaving job

  • March was an emergency plan and now it's about developing a care plan within each skilled nursing facility. The best care plan involves a sustainable program about striking balance:

  • What is required---What is desired?

  • What makes sense---What works?

  • What is Covid safe---What is dementia safe?

  • What is universally better---What is best for this person?

  • What the CDC says---What the POA says?

  • Person-centered care plan

    • Person involvement

    • POA guidance

    • Family involvement

    • Staff involvement

    • CDC awareness to dementia

    • CMS focus on dementia as a special population

  • Techniques that address how to physically engage in intimate space with least risk

  • Techniques that promote visual cues as primary communication strategy

  • Techniques that promote paraverbal strategies in all communications for personal connections

  • Using their name, tone of voice, positioning, posturing

  • In room, solitary confinement and negative outcomes

    • Highest risk for people who are emotionally, physically, or cognitively vulnerable

    • Difficulties with staff time availability, PPE, opposing agendas, skillful engagement


  • Families and friends remaining part of care team with timely and accurate communication patterns

  • Leader involvement with residents, family, friends, authorities, health/ dementia experts, and media; need transparency

  • Unit confinement

    • Unintended consequences much less severe

    • Staff report less stress in care patterns

    • Number of cases not correlated to this practice

    • Family involvement still problematic (we don’t have all the answers)

    • Staff are greatest risk factors for spread if asymptomatic and not proactively testing

    • Use of and availability of PPE and infection control procedures vary


  • Social engagement needed daily that matches needs and likes

  • Unit engagement

  • Family engagement

  • Care staff interactions for complex needs

  • Have situation matching PPE available and in use

  • Staff communicates regarding personal patterns like travel

  • Accurate use of PPE and infection control procedures; intimate contact

  • Keep groupings consistent

  • Family involvement; train them; risk control

  • Staff training and coaching on dementia and infection control procedures

  • Effective supply chains for testing and supplies

  • Honest and timely sharing of risks


  • We each get something we like, want, and need on a regular basis (caregiver and resident)

  • Options and choices are provided for the resident; best if:

    • Advertised

    • Attractive

    • Acceptable

    • Affordable

    • Available

  • Each person feels listened to and supported

  • How we care matters

  • Build back into relationships:

    • Physical activity

    • Emotional wellness

    • Living well with support

  • Problems are acknowledged and addressed

  • Environments are friendly, functional, familiar and forgiving

    • What I like vs what is good for me

    • Lifelong habits vs new needs: Covid

    • How “I” do it vs how “they say to” do it

    • Dementia best practice vs Covid best practice

    • What can I offer vs what you want or need




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