Dementia During Covid

COVID SPREAD

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

ELIMINATION OF COVID

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.

CASES OF COVID

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

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

WHAT WE KNOW

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

AT HOME PATIENTS

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

IMPACT OF COVID

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

LONG TERM CARE FACILITIES

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

WE NEED

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

DAILY NEEDS IN LONG TERM CARE

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

SUCCESS IN LONG TERM CARE

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