Genetic Testing Resources

Brain donation is the ideal way to obtain a confirmed diagnosis while also enabling research into neurological conditions.  Many families who contact us about brain donation want genetic testing.  You have likely been directed to this page as the most efficient way to provide you the information about genetic testing.

The brain bank we work with, Mayo Clinic, does do genetic testing on donated brain tissue but does NOT share these results with families.  It is not allowed to share the results with families because the brain bank is not a CLIA-certified lab.  CLIA-certified labs are required to provide genetic counseling.  We don’t believe that any brain bank is CLIA-certified.

If there is a strong family history of dementia, Mayo definitely does genetic testing prior to the preparation of a neuropathology report for the family.  In these reports, Mayo often says things like “we generally see this particular pathology in those with a certain genetic mutation,” or “given the family history of dementia, we recommend your family consider genetic testing.”  Of course these are strong clues that something is being inherited in the family.

So what can a family do to accomplish genetic testing?  The best is to arrange for genetic testing while the person is still alive.  You might try one of the options below.

If your family member has passed away and his/her brain has been donated, if your family can find a reputable testing lab that can accept frozen brain tissue in slides, then the legal next-of-kin can direct the brain bank (including the Mayo Clinic) to send tissue to the lab for genetic testing.  Your family pays for the testing (but not the shipping).  You can ask any of these options below if they accept frozen brain tissue and can do genetic testing from that.

Let us know if you have additional questions but note that we are not genetics experts or genetic counselors!

Athena Diagnostics

Marlborough, MA
Phone: 800-394-4493, Option 2
Email: [email protected]


San Francisco, CA

Phone: 800-436-3037
Email: [email protected]
Office Hours: M-F 5am to 5pm PT

Offers pre-mortem testing and genetic counseling for $250.  This lab is CLIA-certified.


Prevention Genetics

Marshfield, WI

Phone: 715-387-0484
Email: [email protected]
Office Hours:  7:30 am – 5:30 pm CST

Offers pre-mortem testing of 18 genes associated with dementia (“dementia panel”). Or testing specific to the suspected genetic disorder (“custom panels”).

Offers post-mortem testing

Offers pre-mortem banking for the case when testing is not desired at the present time

“Can Caregiving Cause PTSD?” (NextAvenue)

This is an interesting article from NextAvenue ( on post-traumatic  stress disorder (PTSD) being caused by caregiving.  Advice given to family caregivers includes:
  • Don’t put the brakes on your personal life and feelings.
  • Be aware of your thoughts and your feelings.
  • Take regular breaks, even a short walk or enjoying personal time alone.
  • Get some help, from an aide or respite care.
  • Have a healthy diet, get adequate sleep, get regular exercise, enjoy nature, and engage in pleasurable activities.
The full article is copied below.


Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing

by Juana Poareo, Freelance Writer
August 21, 2020

Kaci Smith, 36, recalls the gradual emergence of her PTSD symptoms about three years ago when she’d been caring for her mother at home following her mom’s 2012 stroke.

“It would be things like almost feeling like a panic attack,” says Smith, a Rochester, N.Y. teacher. “If she would complain of leg pain, I would think, ‘Oh, no. It’s a blood clot. We’re going to have to go through all this medical stuff again.’”

Smith, who stopped working when COVID-19 forced the U.S. into lockdown, has been a 24/7 caregiver for her mother during the pandemic and is on anti-anxiety medicine.

As the “Caregiving in the U.S. 2020” report from AARP and the National Alliance for Caregiving documented, being a family caregiver can be high stress. It can also, in some cases, bring on PTSD (Post Traumatic Stress Disorder), an anxiety disorder caused by trauma. PTSD symptoms typically range from flashbacks and recurring dreams to insomnia and poor concentration.

Researching the Caregiving PTSD Link

Exactly how often caregiving can lead to PTSD is unknown.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

But, Trivedi adds, “As clinical psychologists, we are also recognizing that chronic stress that is unrelenting — such as through caregiving — can lead to PTSD.”

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD.

“It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The Pandemic’s Effect on Family Caregivers

The pandemic may well be making PTSD among caregivers more common.

A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

PTSD symptoms can also emerge for caregivers when a person receiving care has a chronic illness or disability, like Smith’s mother.

COVID-19 has put a stop to in-person social interaction for Smith and her mother. Before the coronavirus spread, Smith’s brother would visit regularly. No more.

“It’s just made my world very, very small,” Smith says.

What Can Trigger PTSD for Caregivers

Whether you’re prone to develop PTSD due to caregiving depends largely on your emotional and physical resilience.

For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.

Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.

“Part of my PTSD also is around abandonment. I think that’s why, with my mom, it [PTSD] definitely gets very triggered when it comes to her health,” Smith says. “She’s also been suffering from cardiovascular disease since I was ten, so even though I became a full-time caregiver at twenty-seven, her health has been something that we’ve been struggling with my whole life.”

Another potential factor for PTSD among caregivers: a lack of family and community support. According to a BMC Psychiatry article, reliable support can make the load more bearable for a caregiver under severe stress.

Advice for Family Caregivers

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on your personal life and feelings, but that’s unwise and could be unhealthy.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.”

Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

You may also want to look into getting some help, either from a home health aide or respite care. State and local programs may pay for this kind of assistance. And if the loved one you’re caring for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature and engaging in pleasurable activities can be useful, too.


Juana Poareo is a freelance writer and blogger in New Mexico who specializes in writing about health. She has worked with HuffPost, Saatchi&Saatchi, OncoLink, MBLM and Ambrosia Treatment Center. Her website is

“7 Ways Family Caregivers Can Combat Compassion Fatigue”

Compassion fatigue is the physical, mental, and emotional exhaustion that can come from caregiving.  It can reduce our effectiveness caring for our loved ones and ourselves.

This is a good article on how family caregivers can combat compassion fatigue:

7 Ways Family Caregivers Can Combat Compassion Fatigue
Guidelines from an expert who’s also had personal experience
By Stephen Chee
August 18, 2020

The author says:

The most effective mantra to surmount compassion fatigue? Don’t be your own worst enemy. Instead, be your own best friend. Speak kindly to yourself and give yourself grace. When we befriend ourselves, we can love and serve others more abundantly.

The seven guidelines described include:

  1. Take Care to Give Care.  Many family caregivers have trouble asking for help. … Yet if we fail to care for ourselves first, we will be ineffective in caring for others.  Remember these three principles: We must receive before we can give; we must learn not to put ourselves last and we must be kind to ourselves by taking time to rest, recharge and recover.
  2. Plan Each Day.  In caregiving, it’s a four-step process:  
    * Choose your planning medium.
    * Schedule a one-hour weekly planning session.
    * Block off time for each daily activity beyond caregiving, such as maintaining your work schedule, shopping, exercising, sleeping, having quiet time, nurturing your spiritual practices, keeping doctors’ appointments and spending time with family and friends.
    * Be flexible and realistic, leaving room in your life for unexpected events.
  3. Cultivate Emotional Intelligence.  [This includes] self-awareness, positive outlook, self-control, adaptability and empathy.  Empathy is needed not only in caring for others, but in loving and forgiving ourselves.
  4. Follow the Caregiver’s Bill of Rights
  5. Build Your Support Network
  6. Seek Physical, Mental and Emotional Recovery
  7. Celebrate and Have Fun

Check out the full article for more details.


“The Unsung Longevity Factor of Social Connection” – webinar notes

I first heard about the negative affects on health of social isolation at an atypical parkinsonism caregiver conference we organized several years ago. People who are socially isolated have mortality rates similar to smokers and twice the mortality rates of obesity. The advice given by the conference speaker was that we should do all that we can to address isolation — whether we be caregivers or those with a neurological disorder. This is especially important because caregivers tend to become isolated and those with atypical parkinsonism disorders tend to become isolated.

Recently, I came across an early 2019 talk on a similar topic — “The Unsung Longevity Factor of Social Connection.” The speaker was Amy Yotopoulos, who was then with the Stanford Center on Longevity. The focus was on the physical and mental health affects of loneliness and social isolation. On the flip side, people who are socially connected are happier, healthier and live longer.

Ms. Yotopoulos addresses how we can make more health-enhancing social connections. Here’s an excerpt from her talk about what three “action steps” can create more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Granted these suggestions were pre-covid but I think nearly all of the suggestions are applicable to our lives during the pandemic. So much can be accomplished over the web, over the phone, or in a physically-distanced setting.

The recording of the talk is available here.

My notes from the talk follow.

Be sure to check out the questions and answers at the bottom. The speaker answered this question — “How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?”


“The Unsung Longevity Factor of Social Connection”
Webinar sponsored by Stanford Health Improvement Program
Speaker: Amy Yotopoulos, Stanford Center on Longevity
January(?) 2019

Notes by Robin Riddle, Brain Support Network

We can keep people happier, emotionally-engaged, and mentally sharp through purposeful activities and meaningful interactions with others.

We are inherently social beings. We need each other to survive. We all want to be connected and to feel connected.

This talk will address:
* Risks of social isolation
* Benefits of social connection
* How to improve your relationships with social connection

Social isolation is deadly. Feeling socially isolated is associated with:
* 29% increased risk of coronary artery disease
* 32% increased risk of stroke
* 64% increased risk of developing dementia
* 26% increased risk of death
* and increased risk for high blood pressure and addiction

* Social isolation – objective
* Loneliness – subjective; self-reported; can be around others and still feel lonely

People who are isolated or disconnected have a mortality rate that is three times as high as those with more and deeper social ties. Twice the mortality rate as those who are obese. Mortality rate is the same as those who are smokers (smoking 15 cigarettes or more a day).

Look at all the things our society (public health work) has done for smokers and the obese but how little we’ve done for those who are isolated.

Like obesity, this is stigmatized. People feel ashamed to admit feeling lonely or being isolated.

This is an issue for all ages, not just older adults. The prevalence of loneliness is highest among adult freshmen.

“During my years caring for patients, the most common pathology I saw was not heart disease or diabetes; it was loneliness.” — Dr. Vivek Murthy (surgeon general, 2014-2017)

In the UK, there is a minister of loneliness. They recognize long-term health effects.

Why are we becoming more disconnected? Decrease in meaningful relationships and purposeful activities.

Research showing we are more alone in middle age. More of us are living alone, especially at younger ages.

50% of US adults are single. Marriage rates (and divorce rates) are declining.

Up to 40% of Americans feel lonely, feel isolated from others, lack companionship, and feel their relationships aren’t meaningful. In this group, 54% feels that no one knows them well.

“Sightlines Project:” Only half of Americans are doing all they can to stay socially engaged.

Baby boomers are least socially-engaged of all the adults in the US.

Social networks are getting smaller. When asked how many confidantes they have, “zero” is the most common answer. This is one in four Americans.

Story of Lyft driver who is a caregiver to his father. The driver has no one to care for him. The driver has diabetes.

One consequence of our increased longevity and decrease in social connection is that an estimated 22% of hospitalized older adults are “unbefriended.” aka, kinless older adults or elder orphans. No family or friends to help with medical decisions or visit them.

8 million people in the US age 50+ have no close kin. Women are more likely to be kin-less than men.

Americans increasingly need to rely on friends. We need to cultivate these relationships. Even if we are married or have children, they may not be able to assist us later on. Friends are important.

We are finally becoming aware of the problem. Naming the problem is a first step. Stigma (of admitting loneliness) plays a big role in not getting help.

Stanford-Harvard-AARP study: the lack of social connection among older adults is costing Medicare $6.7 billion/year.

What is social engagement? Quantity – Number of social relationships we have and the frequency of interaction. Quality – Number of people on whom we can depend and can depend on us. Depth of relationships.

Social engagement leads to better health, higher income, employment, and purpose/meaning in life.

10 Domains of Well-being: (Stanford research)
* Social connectedness – most important domain.
* Then, lifestyle behaviors.
* Then, physical health.
* Next is stress and resilience.
* Next is emotional/mental health.
* Others: purpose/meaning, sense of self, finance, spirituality/religiosity, creativity.

Quantity vs. quality of relationships.

Books: “Bowling Alone” and “Alone Together” (affect of technology)

Depth of relationships:
* meaningful conversation
* sense of support
* can you call someone at 4am?
* can you borrow $400?

Socio-emotional selectivity theory (from Laura Carstensen, Stanford): as a person ages, their social goals shift from being knowledge-related to being emotion-related.

Emotional well-being increases with age. We focus more on the positive aspects of our lives, as we age. A large body of research shows that emotional experience improves with age. People are slower to show anger and more prone to see silver linings. They solve emotionally charged conflicts more effectively and are more likely to forgive and forget.

U-shaped curve of happiness. International phenomenon. Also inter-species! We are least happy in mid-life (40s and early 50s).

Book – “The Happiness Curve: why life gets better after 50,” by Jonathan Rauch

“Baby boomers are isolating themselves as they age,” Laura Carstensen, May 12, 2016.

Older adults may downplay the affect of retirement on their social lives and well-being. Retirement can also be a hit to one’s identity.

Boomers might be empty-nesters, they may have millenials living at home, or they may be caring for older parents.

Stanford survey of those who are primary caregivers of elderly relatives —

Percent ages 55-65 who interact with family:
General US population: 64%
Family Caregivers: 82%

Percent ages 55-64 who have family support:
General US population: 69%
Family caregivers: 54%

So family caregivers have more interaction with family but feel less supported by family. Caregivers may have one-directional relationship with the elderly person they are caring for.

Caregivers are more likely to feel lonely and need support from family and friends.

“Dunbar’s Circles”:
3-5 – very close friends and kin; needed for optimal well-being
20 – friends and broader family
50 – acquaintances
150 – familiars (might be neighbors, barista who knows your order, someone you see and chat with at dog park daily)

When inner circle dips below 2 or 3, we feel lonely. This is your body’s way of telling you that you are lacking something. Like hunger or thirst.

You can diversify by:
* type of connection (like the circles)
* age

We miss out by not having friends of all ages (20 years older, 20 years younger).

How do we get inter-generational contact?

Meaningful relationships:
* Friend social support
* Meaningful interactions with spouse/partner
* Family social support
* Frequent friend interactions
* Frequent family interactions

Group involvement:
* Workforce participation
* Participation in community or religious activities
* Volunteer
* Converse with neighbor

Sightlines Project researched these 9 actions (above). Americans are not as socially connected as they were 20 years ago.

We can become more connected by focusing on friendships. This takes time:
* 50 hours before we consider someone a casual friend.
* 90 hours before we consider someone a real friend.
* 200 hours before we consider someone a close friend.

We need to develop supportive friends, which means being willing to be vulnerable as this creates connection and intimacy.

We need to be better at being a good listener, asking good questions, and sharing.

Maybe have a goal of one friend from each decade.

7 in 10 say they can rely on family members when facing a serious problem.

Family more likely to help in time of need, while friends are more likely to help you enjoy life. We need both. “Family” can mean “family we choose.”

7 in 10 married Americans say they share meaningful conversations with their partner at least once per week. Husbands report more meaningful conversations than wives.

There’s an important role for purposeful activities to better health.

Relationships with neighbors are considered an important aspect of social integration. Feeling like you belong. Creates a sense of community.

Only 1 in 3 say they interact with their neighbors on a weekly basis. This has decreased over time.

NextDoor – trying to address this.

Only 1 in 4 Americans volunteers. Similar percentage over the last two decades. This is not a social norm in our culture. Most who don’t volunteer say that no one has asked them to, and they don’t know of opportunities for this.

VolunteerMatch – trying to address this.

Who volunteers?
* Women more than men.
* 40% of college graduates volunteer vs. 9% of those with no high school degree.
* 35-44 year olds – most likely to volunteer, probably at kids’ schools and with kids’ sports. This is a cultural norm for this age group.

Maybe MDs should give a prescription “to volunteer.” Like a flu shot.

Employees think they will miss their paycheck most when they retire. But what do actual retirees miss the most? Their social connections.

Telecommuting and open office plans contribute to feelings of social isolation.

Standing desks (in an open office plan), which allows for more eye contact, reduces feelings of social isolation.

All age groups have declined participating in community and religious activities. Highest drop among those age 55 and older.

Loneliness is contagious and so is kindness (pro-social behavior). One person can infect many others.

“Social fitness training” – doing five acts of social kindness a day. Even smiling at someone. Both givers and receivers were happier. Benefits lasted for months. People began to “pay it forward.”

Meaningful relationships between old and young create a “secret sauce” that can benefit both generations.

Older adults are the only natural resource that is growing.

Our society is age-segregated.

Conflicting research about the effect of social technology on well-being (loneliness, anxiety, depression). Social media and the internet can be both a boon and a problem. Perhaps it’s different for different age groups. Perhaps asking question of “doing what” is more important than “how long.”

We believe that social technology can be beneficial when it enables us to connect with loved ones but can be a detriment when it creates more social isolation or derision.

Even one text can create a connection.

Teens say social media helps strength friendships and provide emotional support, but can also lead to drama and feeling pressure to post certain types of content. (Pew Research, 2018) There are trade-offs.

This is a natural human instinct to build social connections.

Action steps to creating more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Take-home points:

1- Research shows that staying socially connected is an important way to increase long-term well-being and longevity.

2- Feeling lonely is a normal response to a vital need. It is your body’s way of telling you to connect more with others. Only you know what your personal RDA of connection is!

3- Remember the two main ways people can reduce social isolation and feelings of loneliness — cultivate meaningful relationships and participate in purposeful group activities.


Q: Does introvert or extrovert make a difference to how much connection is needed?
A: This is very personal. It could be that an introvert prefers meaningful one-on-one relationships over group activities. What brings you a feeling of joy and connection?

Q: How is loneliness contagious?
A: When people are feeling isolated and lonely, they aren’t reaching out to other people. Others avoid people feeling this way (as this is visible). Those others become more self-conscious about their social connections and therefore less likely to engage with others in the presence of those who are feeling isolated. (Based on “subtle” research by Nicholas Cristakis, now at Yale.)

Q: How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?
A: (Common question, especially from women.) Women have historically been the carriers of the social life in a heterosexual marriage. In our culture, men are not as able to be as vulnerable and open. I’m OK calling a friend, asking her to come over and talk if I’ve had a bad day. Whereas my husband would probably want to talk to me. This is why wives who are widows do much better than men who are widowers as they are not able to reach out themselves.

It’s difficult to be the spouse as we aren’t able to change our spouse’s behavior. Encouraging people to come into the house, if the husband is less able to leave the home. Invite people over.

Most people over the age of 70 have hearing loss. Most either don’t know it or do they know it but aren’t wearing their hearing aides. Untreated hearing loss has a substantial relationship with our social connections. On average, people wait 10 years before getting hearing aides. If people wait 10 years before getting hearing aides, they’ve already lost cognitive ability and brain power. Men are more likely to have hearing loss. So she recommends getting hearing checked and wear hearing aides. The aides are so much better.

Q: Is there research on a reduced ability to converse after prolonged social isolation for years and years?
A: Not that I’m aware of.

Our social interactions are learned behavior. If this is a muscle that gets un-used, it can go away. But it can come back. Start small.

Q: Is the Stanford Center on Longevity researching remote work spaces (like those recently opened in SF and SJ)?
A: We should be but I’m not aware that they are.

Q: I just moved and got divorced. How do I make new friends?
A: We assume that our friends are going to stay with us our whole lives (from high school on, or from college on). There are milestones (moving, starting a new job, divorce, widowhood) that happen throughout our lives where we need to be mindful about making new friends. Important to prioritize this. Go back to the EASE acronym. Start small in outer ring. Select one or two people in the middle space who might have potential; put more time into those people.


“Caregiver Toolkit in Uncertain Times” (such as covid) – webinar notes

In late June, Presbyterian Senior Services ( in New York City hosted a webinar for caregivers on how to protect yourself and your loved one during this time of covid-19.

Presenters offered guidelines for questions to ask and procedures to follow to prevent transmission of covid-19 to you or your family:

  • if you have or need in-home care
  • live in an assisted living facility or are moving to assisted living
  • for home care services following hospital discharge, and
  • for venturing out as businesses open.

Presenters also provided:

  • Online covid-19 resources
  • A list of equipment needed to collect vital signs for telehealth visits
  • Go-Kit packing list with the basics you will need (and want) if you have to take your loved one to the hospital and they are admitted
  • In-home covid-19 test kit information

This webinar was recorded and can be viewed at:

Denise Dagan, with Stanford Parkinson’s Community Outreach, listened to the webinar and took notes.  See below.


Caregiver Toolkit in Uncertain Times
Webinar hosted by Presbyterian Senior Services
June 25, 2020

Notes by Denise Dagan, Stanford Parkinson’s Community Outreach

Presenters: Melissa Sheehan and Laura Radensky, LCSW

Mind Set Preparation – Keeping Calm

Keep a mindset of being open to not knowing what is next

Accept continuing risks and take reasonable precautions

– Wearing masks
– Hand washing
– Limiting people coming into our home or ensuring those who come into the home have proper protective equipment.
– Limiting exposure
– Practicing self care (eating well and attending to health issues)
– Err on the side of caution as businesses reopen
– Realize information about covid-19 is an evolving body of knowledge
– Look at good data:  Center for Disease Control (, NY State Novel Coronavrius (, and Johns Hopkins (, Institute for Health Metrics and Evaluation (

Equipment Preparation at Home

* Ordering personal protective equipment including masks, gloves, hand sanitizer, thermometers.  Keep in mind soap and water are recommended over hand sanitizer.

* Higher level of equipment including face shields, gowns, scrubs, N95 and KN95 masks. This equipment should be used by hired care givers working in your home. Expect that N95 masks be reused due to shortages of equipment.

* Equipment to collect vital signs prior to telehealth visits, including:

– blood pressure cuff

– pulse oximeters.  Normal blood oxygenation is at least 95%.  In many cases, upon arrival at emergency rooms, covid patients’ blood oxygenation levels were in the 70s, 60s, even 50s. Doctors tell patients to visit the hospital if blood oxygenation drops to 93%, or below.

– scales

– thermometer. All staff working in your home taking temperature twice daily.  Everyone entering the home should have their temperature taken before entering.

Testing Options

Greater availability of testing options

Possibility now to request COVID-19 tests and antibody testing

Being able to have testing in your home and sent to lab
* LabCorp – Pixel at-home kit
* House calls:  doctor visits at home may do covid-19 testing

Accuracy issues and possibility to still be contagious:
* In light of this if you have been exposed or have symptoms, self isolate
* Be extra vigilant about wearing masks hand washing to protect yourself and others

Planning Ahead

Home care, assisted living are still options, but:

* Assisted living has limited visitation, social interaction, entertainment, etc.

* In addition, assisted living facilities are doing twice daily temperature checks, etc.

* There are far fewer covid-19 cases in assisted living facilities.  Most senior residential care facility covid cases have been in skilled nursing/nursing homes.

Live-in service and fewer caregivers with home care:

* Just like clients discontinued in-home care due to concerns of catching covid, on-home care workers stopped working as in-home care givers due to:

  • self isolating due to personal exposure
  • child care while schools are closed
  • personal concern over becoming infected or infecting others

* As businesses reopen more caregivers should become available.  Some services have changed policies to limit exposure to patients.

Advance Directives, especially the choice of a healthcare proxy since covid-19 is a fast moving disease process. Make sure your advance directive information is available so carers don’t have to go looking for it.

Online cultural options:  musueums, opera, music, concerts

The “New Normal”

Ensuring restaurants and other public spaces are accessible and safe

Having 60% (or higher) alcohol wipes available and proper spacing of tables

Preparing ahead to ensure safety

Providing Care to Those Who are Ill

Most home care agencies have N95 and KN95 masks that filter 94% of small particles to provide safe services to clients

Face shields, gowns, and other equipment also provided by agencies

Arranging for workers to stay home if have had contact of are symptomatic at least 14 days and then having testing.  Newest guideline requires two negative COVID tests at least 24 hours apart before returning to work

Some agencies particularly with LPN staff will provide care to active COVID clients

Sometimes, aide services were on hold for active COVID clients but skilled services are still provided (nursing, physical, occupational and speech therapies)

Provider Questions

How are staff being tested and monitored for cases?

– And are there any cases among residents and staff?

– Testing of staff and residents should happen weekly.

How is information on any cases being communicated to care partners?

– Testing results should be available to anyone who asks.

– Notification of all involved parties should be communicated (text, email) immediately.

What are the steps being taken to clean and sanitize?

– Should be a robust procedure for cleaning the facility.

– Should be regularly cleaning high touch areas.

– What are they cleaning with?

– Are there check lists for which areas and how often cleaning is done?

– Who’s doing the cleaning?

– How are staff being trained on procedures?  Recommend ongoing training on hand washing, sanitizing and procedures for social distancing.  Recommend three times weekly in service training on procedures for hand washing, using hand sanitizer, taking temperature at building entry, check list of all personnel entering the building to clear those without fever, exposure or symptoms.

Creating a Go-Kit with what you need in an emergency

  • Cell phone
  • Charger
  • Glasses / hearing aids
  • List of phone numbers
  • Copy of advance directives
  • List of medications (with dosages and times)
  • Copy of insurance ID cards
  • Small amount of cash or prepaid debit card
  • Book
  • Pajamas / underwear
  • Hairbrush
  • Toothbrush / toothpaste

Transitions to Home from Hospital – Resources to Manage

Medicare home care and changes in protocols for care under COVID-19

  • Skilled nursing care
  • Home care services
  • 30 days, but can be extended if need can be shown

What to expect when arranging for private home care

  • Some limitations in staff with multiple language skills
  • Maintaining a safe environment at home when visitors come in

Know before you go – the New Normal

Call ahead or look at the website of your destination.  Does the business have a policy posted online for keeping staff and patrons safe?

Are they conducting daily health checks of their employees?

Are high touch and public areas being regularly sanitized and cleaned?

Is social distancing being observed when possible?

If patrons are waiting, are guidelines marked for social distancing?

Are employees wearing face coverings when appropriate?

Is hand sanitizer readily available?

Are signs displayed about hand hygiene and stopping the virus?

Are employees enforcing masks, social distancing, and stopping unhygienic behaviors?

If everything looks like it did 6 months ago, ask questions!