Two weeks ago, our blog discussed the increase in STDs among seniors and the need for those who work with this population to discuss sexual activity openly and honestly. The acceptance that seniors are sexually active is important and programs and facilities working with them must adopt policies about safer sexual behaviors for their residents. Beyond that, all facility staff – from nurses to CNAs to volunteers to administrators – need to be trained in the knowledge of sexually transmitted infections and be able to hold non-judgement discussions with those they care for as well as the resident's families.
All involved in senior care must be comfortable discussing sexual activity which will help in removing the stigma of senior sexual behaviors. Such discomfort with the subject can keep seniors from sharing concerns about symptoms they may be exhibiting that could be a sexually transmitted disease. Unfortunately, having an STD can make them more vulnerable to a more serious condition, Human Immunodeficiency Virus (HIV).
First, lets look at the difference between HIV and AIDS.
HIV (human immunodeficiency virus) is the virus that damages and weakens
the body's immune system. This system is what your body uses to fight off infections and diseases. Once a person has HIV, they then put themselves in danger of experiencing life threatening infections and certain cancers – many of which the body could fight off with a healthy immune system.
Once the body loses its ability to fight off infections and other diseases, HIV then leads to a more serious illness called AIDS (acquired immunodeficiency syndrome). Once this happens, the person is more vulnerable to unusual forms of cancer and other serious diseases, like resistant pneumonia.
With that said, why is HIV becoming a problem for seniors? For that answer, we need to go back over three decades in time.
When the HIV epidemic first hit, those diagnosed with HIV or AIDS could not be expected to live longer than 12 to 24 months. For those who were associated with health systems that treated HIV, it was a time of great duress for all involved.
Don Drake, one of our Community Senior Health Presenters, worked for the New Jersey Department of Corrections in the 1970's and early 1980's when HIV seemed to flood the prison system.
“We would get intakes from another correctional facility and all would seem fine, but within a week or so, they would develop a cough or fever and then become seriously ill”, Drake said. “They would be transferred out to a medical facility where they seemed to die within weeks. Inmates and Corrections Officers alike were scared, no one knew where it came from, how you contracted it or how it was spread. It was a frightening time for those in the system and for the families who had loved ones incarcerated.”
Because those afflicted died quickly, there was no focus on issues of aging for those with the virus. But, as treatment improved and a numbers of antiretroviral drug cocktails were introduced, people with HIV began to live longer as the virus was kept suppressed. Today, an increasing number of people over the age of 55 are alive and living with HIV.
Here are some numbers from the Centers for Disease Control (CDC) regarding seniors and HIV:
People aged 50 and older accounted for 17% (6,812) of the 39,782 new HIV diagnoses in 2016 in the United States. People aged 50 to 54 accounted for 43% (2,959) of the new diagnoses among people aged 50 and older.
Among people aged 50 and older, blacks/African Americans accounted for 42% of all new HIV diagnoses in 2016. Whites accounted for 37%, Hispanics/Latinos accounted for 18%, and other races/ethnicities accounted for 4%.
Among people aged 50 and older, 49% of new HIV diagnoses in 2016 were among gay and bisexual men, 15% were among heterosexual men, 24% were among heterosexual women, and 12% were among people who inject drugs.
In 2016, 35% of people aged 50 and older already had late stage infection (AIDS) when they received an HIV diagnosis (i.e., they received a diagnosis late in the course of the infection). But that percentage has declined since 2011, when 42% already had late stage infection.
So the good news is that people with HIV are living longer as long as they
follow their course of treatment. The bad news, however, is that with this increase in life expectancy, those with long-term HIV exhibit many clinical characteristics commonly observed in aging such as multiple chronic diseases or conditions, the use of multiple medications, changes in physical and cognitive abilities, and increased vulnerability to stressors.
And while those with HIV have been able to avoid the conditions associated
with AIDS, research is now finding that they are contracting conditions like cardiovascular disease, lung disease, certain cancers, HIV-Associated Neurocognitive Disorders (HAND), and liver disease (including hepatitis B and hepatitis C) at higher rates than their same age counterparts who do not have HIV.
HIV also appears to increase the risk for other age associated diseases as well, leading to chronic inflammation throughout their body. This inflammation is associated with diseases like cardiovascular disease, lymphoma, and type 2 diabetes. Unfortunately, this occurs even when HIV patients are receiving treatment. Researchers are working to find the cause.
Baltimore health officials express their own concerns about HIV/AIDS among seniors and the importance of teaching seniors and providers about this concern. Please watch this video from WBAL-TV in Baltimore. Connelly Law Offices, Ltd. has a free presentation on this subject for facilities that work with seniors.
But there also is another problem with HIV and its treatment and this affects the brain. At one time, AIDS related dementia was a major problem for those with HIV, and now it is rare but over half those with the virus develop a condition called HAND (HIV-Associated Neurocognitive Disorders), which we mentioned earlier. HAND may include deficits in attention, language, motor skills, memory, and other aspects of cognitive function that do affect their quality of life. It can also lead to bouts of depression or psychological distress.
Another issue that arises with HIV and seniors is that older Americans are diagnosed later in the course of the illness and as a result, begin treatment later as well. Because of this, more damage to the immune system can occur, leading to poorer outcomes and shorter survival rates. And as we mentioned earlier, the illnesses associated with AIDS can be mistaken by healthcare providers as conditions of normal aging.
We now know that seniors are more sexually active today than ever before, but why does this make them more vulnerable to HIV than younger people? Well, there are two factors that both age groups do share equally -- the lack of knowledge of HIV and other forms of sexual disease prevention and having sex with multiple sex partners.
But, there are other factors that are unique to seniors:
Because seniors are no longer worried about pregnancy, they are less likely to use forms of protection.
As we age, our skin becomes thinner and subject to tearing. This is also true of the vaginal wall. HIV invades the body through openings in the skin so friction in this part of the body results in a perfect opportunity for HIV and other diseases to enter the bloodstream.
Seniors are less likely to discuss sexual health issues with their doctor and conversely, doctors are less apt to bring up the subject with older patients.
Stigma is also a concern with people of all ages with HIV, but especially seniors, many of whom are already facing isolation due to being ill or the loss of family members or friends. The stigma of HIV certainly negatively impacts their quality of life, how they feel about themselves and prevents them from seeking HIV care or disclosing their HIV status to providers. And that last statement is a problem for those who provide care for seniors.
“I have seen patients enter care and keep their status quiet, even refusing to supply the name of medical providers or conditions out of fear that their HIV diagnosis would be shared at the facility”, said Fran, a social worker from a program in Boston. “This causes problems when issues arise medically and they are misdiagnosed as age related conditions. I remember one resident who refused to share any medical information with staff and we later discovered she had been diagnosed with AIDS. One evening, she became ill with what we thought was a case of diarrhea from a stomach bug but it quickly became apparent that this was something else. She was transported to the hospital where she was diagnosed with C. diff. It nearly killed her and sent the facility into overdrive trying to prevent other residents from becoming ill.”
C. diff, or Clostridium difficile, is an organism normally found in the human gastrointestinal tract, but when immune function is compromised, as in an HIV diagnosis, this bacteria overgrows in the intestines and produces toxins that cause both severe infectious diarrhea and inflammation of the large intestine.
And in a senior facility, where the normal process of aging means that the immune system becomes weaker, C. difficile can be deadly. The bacteria is present in the stool of infected people, forming spores that can be transferred by direct contact with toilets, bed rails, towel racks, etc. These spores can also spread from hand to mouth when someone comes into contact with an infected surface.
More problematic is the fact that C.difficile spores can live outside the body for up to five months on environmental surfaces and are not easily killed by traditional disinfectants. Chlorine bleach based cleaners work best while alcohol based cleaners are ineffective in killing C.diff. This is just one reason that stigma associated with HIV and the general discussion about sexual activity with seniors needs to be more transparent and less taboo.
How would a senior know if they had contracted HIV? The symptoms can be quite misleading as most people do not notice any symptoms when they first acquire HIV. It can take as little as a few weeks for minor, flu-like symptoms to show up, or more than 10 years for more serious symptoms to appear, or any time in between.
Signs of early HIV infection include flu-like symptoms such as headache,
muscle aches, swollen glands, sore throat, fevers, chills, and sweating, and can also include a rash or mouth ulcers. Symptoms of later-stage HIV or AIDS include swollen glands, lack of energy, loss of appetite, weight loss, chronic or recurrent diarrhea, repeated yeast infections, short-term memory loss, and blotchy lesions on the skin, inside the mouth, eyelids, nose, or genital area. And many of these symptoms can be attributed – and often are – to aging.
Today, the CDC recommends that everyone 13 to 64 years old get tested for HIV at least once and that people at high risk of infection get tested more often. Your health care provider may recommend HIV testing if you are over 64 and at risk for HIV infection because of multiple sex partners. And remember, if you have sex with someone, you are having sex with everyone they had sex with, too. And if they have engaged in other high-risk activities in the past, such as IV drug use, you elevate your chances of being exposed to the virus.
We have talked about the health issues associated with HIV, but what about other life issues that occur because of becoming sick with the virus - like insurance problems and finances?
Don Drake, who was the director of a program working with older adults with HIV/AIDS and addiction issues at a hospital in Boston before his retirement, expressed concerns about these issues among those diagnosed with this condition.
“We would have someone admitted to us for treatment and they would be stabilized medically and their addiction issues would be treated and they would be in recovery. In many cases, because of conditions associated with their HIV/AIDS, they would be transferred to a long-term care facility with Medicaid and receiving SSI”, said Drake. “Then, a parent would pass away and they would receive money from the estate. That's when all hell would break loose."
"If the inheritance was significant enough, they ran the risk of losing their government disability benefits - including Medicaid. The long-term care facility would seek payment and it became a crisis for all concerned. What we did was discuss these issues upon admission with the patient and their family and made referrals for legal services if required. More than one family wondered why we had concerns about their financial status and we had to explain the serious consequences of not having the proper plans in place", said Drake.
“This is a very real problem, not only for those with HIV/AIDS, but for anyone with severe disabilities”, stated Attorney RJ Connelly III, a certified elder law attorney. “Here’s what happens, any windfall of money from an estate could cancel all government benefits, requiring the disabled child or adult-child to pay for the benefits they had previously received out of their inheritance from the estate. Once the inheritance is diminished, they will have to reapply for government benefits and face the possibility that they may not be re-approved. It can be a real mess.”
“If someone has a disabled child, having the proper elements of an estate plan in place is crucial. This may include a special needs trust or even exploring a guardianship. Seeking the advice of an experienced attorney to guide someone through this process is extremely important", said Connelly.
Remember, there is no cure for HIV. But if you acquire the virus, there are drugs that help suppress the level of HIV in the body and prevent its spread to other people. HIV has become like a chronic disease, and people living with HIV receiving successful treatment can live a long and healthy life.
And because of the stigma associated with HIV, it is important for older people with HIV have access to mental health and other support services to help them stay healthy and remain engaged in HIV care.
What we have learned is that HIV, and all STDs, can have profound effects on a senior. Not only from a health standpoint, but socially, financially and even legally. Having a discussion about sexual behaviors with seniors makes sense on so many levels. It's time we stepped up and showed our seniors the respect they deserve.
Attorney Connelly practices in the area of elder law. This area of law involves Medicaid planning and asset protection advice for those individuals entering nursing homes, planning for the possibility of disability through the use of powers of attorney for the both health care and finances, guardianship, estate planning, probate and estate administration, preparation of wills, living trusts and special or supplemental needs trusts. He represents clients primarily in the states of Rhode Island, Connecticut and the Commonwealth of Massachusetts. He was certified as an Elder Law Attorney (CELA) by the National Elder Law Foundation (NELF) in 2008. Attorney Connelly is licensed to practice before the Rhode Island, Massachusetts, Connecticut, and Federal Bars.