How to age gracefully with HIV

HIV/AIDS           ELDERLY            RESEARCH

Vision Group has dedicated this month to re-energise the population back into focused battle against HIV. Today Hilary Bainemigisha explores the issue of HIV/AIDS among the elderly, sharing with the old people and there caretakers the right strategy of management

The Medical Research Council/Uganda Virus Research Institute (MRC/UVRI), a research unit on HIV in Entebbe, undertook a study, which was published in May 2011, about the elderly in Uganda living with HIV/AIDS.

They found that there problems range from having many diseases at ago, poor health care, isolation, neglect, and lack of support. Many from the rural areas also mentioned lice, jiggers and bed bugs.

A 70-year-old female respondent on ART talked of general weakness, backache, leg pain, poor appetite, and irritability.

"I feel bad that I am old and sick, unable to walk like before. I cannot even wash clothes, cook, sweep the house, squat on the pit latrine and wash thoroughly. Some weeks I don't receive any assistance from anyone and lack of visitors makes me feel more miserable. I was happy when my son promised to bring me sugar because when there is no sugar, I think of my dead children and other problems, and than I can't sleep," she said.

Another 73-year-old woman talked of headaches, leg and feet pains, a cough, palpitations, ulcers, toothache, severe neck pain, and an unspecified blood pressure concern. She said she had difficulties with household activities due to old age and felt neglected by her son. She cries when she thinks about her late daughter who died in labour about 16 years previously. She often suffers mood swings.

A 74-year-old man on ARVs sells waragi (alcohol) and says he cannot avoid drinking because it allows him to socialise with others, prevents loneliness, and helps him sleep. He complains of bad dreams, epigastric pain, and a slight headache. He says he sometimes runs out of medicine with no money to take him to the TASO clinic in Entebbe. Other times, he takes his drugs on an empty stomach.

Bigger problem
Thanks to HIV medicines - Antiretrovirals (ARVs), AIDS-related deaths in Uganda have declined to 28,000 from 31,000 in 2014. This increased longevity among persons living with the virus has led to more Ugandan getting into the 60s and above years of age with HIV. 

According to Uganda data from Mills and colleagues, people who start ARVs at age 50 are likely to live for an additional 24 years. A mathematical model using South African data predicted substantial increases in HIV prevalence in older age groups. These findings suggest that people living with HIV are likely to live well past the age of 50, leading to an elderly life on ARVs.

However, the national response is focused on teenagers, mothers and children, most at-risk groups such as sex workers, drug users, and migrants but one group that has so far received very little attention is older adults. That leaves many senior citizens living with HIV, and some taking ARVs, at the risk of subjective care from doctors.

A study by Drs Joel Negin and Robert G Cumming of HIV infection among older adults in sub-Saharan Africa revealed new challenges among the elderly living with HIV which have to be addressed. They included a burden of more diseases, more side effects from ARVs and hence, less likely adherence to treatment.

The study, which was published in the Bulletin of the World Health Organization, added that the toxicity of ARVs, combined with decreased kidney and liver function in older individuals, may lead to treatment difficulties and drug interactions.

Negin, from the University of Sydney, Australia, gave an example of older women who experience the thinning of the vaginal wall after menopause, which increases the risk of HIV transmission during sex.

"Yet they are usually poor and unable to afford health services," he said. "The lack of targeted prevention services becomes even more important because the delivery of services to older adults with HIV infection needs to be improved"

Never too late
The common perception that the elderly are not sexually active and so, are safe from sex, is unfortunate. First, they can get HIV through contaminated instruments either in hospitals, at home, from there caregivers and traditional ceremonies. It can also come from blood transfusion and accidents. But it can also come from unprotected sex with an infected partner.

It is never too old to catch HIV from sex. Data from the US in 2005 showed that older adults accounted for 15% of new cases of HIV in the US. Another study in the UK estimates that 48% of older adults diagnosed between 2000 and 2007 acquired there infection at age 50 and over.

In Africa, there is substantial evidence that people remain sexually active past the age of 50 and well into there 70s. And that the rate of condom use is less frequent because of erectile dysfunction and a very low perceived risk of infection.

HIV data from Uganda shows that 40% of 750 patients aged 50 and above who were reporting for HIV care, remained sexually active after there HIV diagnosis. They also had a significantly higher rate of STIs than younger patients.

Why you should avoid HIV in old age
Prof Ronald Hammer, a researcher in HIV among the elderly in South Africa, says aging is the Number one problem in HIV today. Many older HIV positive people experience much more comorbid conditions (many diseases at ago) like bone disease and fractures, heart disease, abnormal lipids, kidney disease, brain and neurologic disorders, diabetes, cancers, frailty, and HCV (HBV too).  

HIV is a devastating virus, he says. It gets into the brain within days of transmission and remains there forever despite successful viral suppression. As we age with HIV and the immune system grows older and brain disorders worsen. The immune system is crippled by HIV.

While younger people with HIV have no problem with there brain and cognitive function, abnormalities like Alzheimer's are common as people age past 60-65. They also have much more many diseases at ago, which come much earlier and accelerate aging.

"I have about 10 elderly patients who are living with HIV. 7 of them have experienced fractures from falls and increased frailty and therefore disability," the professor said. "The cost of treatment is more than just ARVs. Some of them may be taking as many as 8 to 12 additional pills or medications besides there ART medications."

Breakdown of immunity
Experts noticed that while young people taking ARVs suffer some decline in the functionality of immunity cells, older adults face steeper declines in immunity progression and slower immune system reconstitution because the immunity is more vibrant at a younger age.

According to Dr. Bonaventura Mpondo of the University of Dodoma, Tanzania, the immune recovery in older patients is lower than that in younger patients.

"A study done in Tanzania found a significant difference in absolute CD4 gain between elderly and younger patients, with a lower gain among elderly patients," Mpondo, who has studied HIV among the elderly, said. "The study also found poor clinical outcomes in elderly patients as compared to younger patients."

Increases other diseases
Hammer says that while non-communicable diseases like heart disease, diabetes, certain cancers, and bone disease normally inflict the elderly, including those who are HIV negative, just due to aging and lifestyle, HIV and ARVs usually increase the risk of these diseases even in younger populations. The virus, therefore, is an independent risk factor for these diseases for people who live on ART longer," he explained.

Elderly patients are more likely to have combination diseases including cardiovascular disease, renal disease, and diabetes. Adding HIV complicates the already complex situation. The MRC/UVRI report mentions the common diseases converging on people living with HIV include TB, arthritis, stroke, hypertension, chronic lung disease, asthma, angina, depression, diabetes, cataract, and injuries.

Late diagnosis
Yet, according to Mpondo, it takes some time before health workers decide to test for HIV among the elderly. Many health caregivers do not expect the elderly to have HIV and so, mistake all symptoms to be reflective of old age generally.

AIDS-related dementia is often misdiagnosed as Alzheimer's, and early HIV symptoms such as fatigue and weight loss may be dismissed as a normal part of aging, he said.

"When compared to younger patients, the elderly are usually diagnosed at an advanced stage of HIV," he said. "Late or missed diagnosis is due to lack of awareness of HIV risk factors among the elderly, failure of health care providers to suspect HIV in there elderly patients, absence of routine HIV screening in this population, and also because the HIV symptoms are often similar to symptoms of other common conditions associated with aging," he said.

Rapid progression
Mpondo adds that an older person is more likely to progress from HIV to AIDS much faster than a younger person. He discovered from his study on HIV among the elderly that toxicities from ARVs were more likely to cause harm than in younger ones. Older persons with AIDS die sooner than younger persons.

Other issues of ARVs with the elderly include there inability to metabolise ARVs and therefore it's increased toxicity, presence of earlier health conditions like cardiovascular disorders, kidney and liver diseases and potential bad interactions between the drugs they may be taking and ARVs.

Problems of the elderly with HIV
Dr. Monica Kuteesa did research on older people living with HIV in Uganda and there medical care experiences for the University of Sydney. Data were collected from 40 HIV-positive adults, aged 50 years or older, attending two clinics in Uganda.

She categorised 10 specific problems affecting older people living with HIV as follows: First, there is lack of access to care (80%), secondly, the quality of patient-provider relationship (75%), thirdly, delayed diagnosis and care-seeking (55%), fourthly, stigma (43%) and fifthly, adherence support (25%). The others are discordance (20%), continuity of care (14%), difficulty in disclosing (8%), end-of-life issues (13%) and other issues (20%).

Stigma
Most elderly face a double burden of stigma which stops them from accessing healthcare for HIV.

"Most of the participants expressed anxiety about securing healthcare in the future and concern about the lack of social services," Kuteesa wrote. "Many had problems with transportation and food that compromised there adherence to ARVs."

She suggested that Government programmes be arranged in such a way that HIV-prevention, treatment and care programmes seek to meet the special needs of older people through focused and innovative approaches. For example, there services could be brought to there homes instead of subjecting them to long distances, long waits in line and stigma.

Way forward
Asked on what can be done, Hammer said treatment centres should start innovating on how to assist the elderly who are living with HIV.

"Of course we should continue the search for a cure for HIV but not to the exclusion of adequately addressing the aging/HIV problem," he said. "Even if a cure was found tomorrow, the damage to the immune and organ systems will have already been done, and a cure will not undo the damage.

We need to address all the other problems older patients are facing like disease burden, loneliness, depression, poor feeding, daily living disabilities and the difficulty in accessing health care. We need a dedicated program and strategy for HIV management among the elderly."

He advises that health providers need the training to provide good care and the elderly need information about such preventative measures as exercise, a good diet, and a healthy lifestyle.

"Healthcare providers often do not consider HIV to be a risk for there older patients. They rarely or never talk to there elderly patients about HIV risk factors or even test them for HIV. Few prevention programs exist for the elderly.

All this needs to change. Prevention programs specifically for older adults need to be designed. More research on HIV management among the elderly is needed," he said.

The MRC/UVRI study sought answers from the elderly people who were living with HIV and were in need of care and found out that the Government needs to engage them in the discussion, and to recognise that they were as productive and valuable as the younger generation.

They wanted initiatives and services to be tailored to there needs especially removing the barriers stopping older people from accessing health services. They also wanted financial assistance of health insurance that can cater to there complicated ailment.

The elderly want Government to expand HIV prevention programs to target them in an appropriate and age-sensitive manner, design and provide age-friendly primary health care services that include appropriate HIV services for older people and set up home-based care policies and programs, including standards of care guidelines to address the specific economic, health and psychosocial needs of older people.

Advice for successful aging with HIV
Canadian researchers interviewed HIV-positive people over the age of 50 and came up with six key themes.

• Accepting limitations: It is important to come to terms with the realities of aging and living with HIV and not expecting to be able to have the same level of activity as when you were younger or HIV negative.

• Staying positive: Living longer with HIV also depends on lifestyle. A life on drugs needs a responsible lifestyle without smoking, alcohol, drugs, promiscuity and good primary health care. A healthy lifestyle includes eating healthily, abstaining from drugs and smoking, getting rest and sleeping well, minimising stress and regular exercise.

• Maintaining social support: It is important to remain connected with friends, family and other people with HIV as an essential element of support, inspiration, comparing notes and advocacy.

• Taking responsibility: If you still can, get involved in managing your own healthcare. Try to be self-reliant in finances because your old age health is destined for high-cost management.

• Engaging in meaningful activities: These could be maintaining existing activities or finding new ones, including taking care of oneself, taking care of other people, volunteering or employment.