The cost of isolating frail elders in nursing homes — many of which have been on a literal lockdown for months — is taking an even steeper toll than aging advocates feared. A new survey of 365 nursing home residents in 36 states, conducted in July and August, by the nonprofit Altarum Institute shows that pandemic restrictions have affected nearly every part of their lives, especially their mental health.
Altarum executives said this is the first known poll of its kind to directly ask nursing home residents about their personal experiences during COVID-19. The survey was distributed nationally as an online, public link. Altarum reached out to nursing home residents through their friends, colleagues, aging associations, ombudsmen and long term care associations.
What they learned from those who responded was that their ability to freely move around, have outside visitors or socialize with other residents has significantly decreased since March — significantly impacting their psychological well-being.
Many of the open-ended comments are heartbreaking.
One resident noted, “If the virus doesn’t kill me the loneliness will.”
Another commented, “I have become more anxious and depressed due to the separation from my loved ones.”
And another wrote, “I have little appetite and am losing weight.”
“We’ve come a long way in understanding how to keep people safe, and also need to understand that the quality of life is paramount for people later in life, who are often in their last two or three years of life,” said Anne Montgomery, co-director of Altarum’s Program to Improve Eldercare. “Being restricted for six months is a very big percentage of their remaining lifetime and very obviously devastating. So, we would hope that this would be a further signal that we need to move away from such restrictions permanently.”
The devastating emotional impact on many nursing home residents has also translated into accelerated physical and mental health decline, according to the report. Forty percent of deaths from COVID-19 have occurred in nursing homes and assisted living facilities. In response, most implemented a strict lockdown — barring visitors, family members, ombudsman, and essentially confining residents to their rooms for much of the time, with few exceptions. Additionally many facilities have suffered staffing shortages as workers contracted the virus and replacements were often difficult, or impossible, to find.
Many nursing home residents don’t leave their rooms
These restrictions, while intended to keep nursing home residents safer, have made a significant impact on their day-to-day lives. “I have been restricted to my room so long my life has gotten worse. No visitors, no going out, no nothing,” commented one resident surveyed.
Despite the severe restrictions placed on socialization, some people living in nursing homes say they are doing their best to adapt. “I live a full life online, taking classes, visiting with friends, attending meetings. We have our programs on the TV now,” said one.
On Sept. 17, the Centers for Medicare and Medicaid (CMS) issued new guidance easing some visitation restrictions, although each facility may interpret the guidelines differently.
More than three-quarters (76%) of those responding said they felt lonelier under the restrictions; which is not surprising since nearly two-thirds (64%) said they don’t ever leave their rooms to socialize with other residents.
“Social isolation and loneliness is not new,” said Montgomery, “But the circumstances are much more extreme.”
Many people living in nursing homes feel strongly that family visits should be a priority and that the facilities need to be more creative about how to make these visits possible. “I do get lonely at times and I sometimes cry,” commented one resident.
Stark findings from the survey
Among the survey’s other findings:
- Only 5% had visitors three or more times per week, compared with 56% prior to the pandemic
- 93% said they did not leave their nursing home for routine activities such has having a meal with family members; prior to the pandemic only 42% did not leave the facility for routine community activities
- Only 28% went outside to a patio, sitting area or similar location for fresh air at least once per week, compared with 83% pre-COVID
- More than half (54%) are not participating in any organized activities like exercise classes, resident meetings or religious services; only 14% of residents didn’t get involved in such activities prior to March
- Just 13% of respondents said they eat meals in a communal dining room, compared with 69% pre-pandemic
Several respondents said they feel like they are in prison and that total restrictions — such as staying in their rooms, no visitors and no communal dining — are too confining. The nursing home residents felt they should be afforded the option to assume a higher risk from visiting with family and that a total “lockdown” strategy is not workable.
Social isolation can lead to premature death
According to the CDC, social isolation significantly increases the risk of premature death from all causes — a risk that is on par with smoking, obesity and physical inactivity. Social isolation is also associated with a 50% percent increased risk of dementia. Those with dementia may also be at risk for increased isolation. And, emotional distress is another known risk factor for premature death.
“I miss hugs and touch, especially from my family members,” said one survey respondent.
“I miss my family and I’m very lonely and depressed,” said another.
The revised CMS guidance released in September was designed to help nursing homes facilitate visitation in both indoor and outdoor settings and in compassionate care situations. Guidelines include the screening all visitors, use of face coverings, maintaining at least six feet distance, hand hygiene, use of personal protective equipment (PPE) and cleaning and disinfecting surfaces that are frequently touched.
CMS urged outdoor visits, which pose a lower risk of coronavirus transmission due to increased space and airflow. Indoor visitation can be allowed if there have been no new COVID-19 cases in the past 14 days and the facility is not conducting outbreak testing per CMS guidelines. Indoor visitation is also subject to other requirements.
Calls for loosening restrictions
“The unprecedented social isolation caused by this pandemic and our nation’s patchwork response has caused anguish for nursing home residents, their families, as well as for the staff who do all they can to ensure residents’ well-being,” said Katie Smith Sloan, president and CEO of LeadingAge, the association of nonprofit providers of aging services.
She noted that the drastic restrictions required by CMS, while attempting to protect such a high-risk population from COVID-19 infection, has also highlighted the detrimental impact of social isolation.
“Maintaining connections and visits with family members is crucial to residents’ well-being,” said Sloan.
While some level of isolation is critical to prevent and contain the spread of the virus in nursing homes, this survey demonstrates that long-term restrictions on visitation negatively impact residents’ quality of life, according to Montgomery. This means staff need to be flexible enough to make continual modifications to care protocols, staffing duties and workflows and the physical environment to help residents adjust to safety-focused restrictions, while not compromising their emotional and mental health, she added.
The report recommended nursing homes assess residents for social isolation and loneliness and develop approaches to address these situations as part of an individual’s care plan. This includes creating visiting plans for residents who wish to see friends and family and improving communication.
The report also calls on CMS to issue guidance on incorporating residents’ individual preferences about what level of risk they are comfortable with regarding group activities and COVID-19.