By Luke Carter, Admiral Nurse at Order of St John Care Trust
Today marks Worlds AIDS Day – a worldwide day of remembrance for those who have died from HIV-related illness. It is an opportunity to stand in solidarity with those living with HIV, which includes carers and people living with dementia, and to renew the effort to end HIV infections by 2030.
HIV is transmitted through unprotected sex or exposure to blood containing the virus. It can be caught by anyone regardless of their sexual orientation, age or racial heritage. It is often transmitted by those who don’t know they have the virus. It’s why awareness is vital in the fight against it.
What is HIV?
The Human Immunodeficiency Virus or HIV was identified in 1984 when it led to wide-spread fear and panic across the world. Early on, it was wrongly assumed that HIV only affected the LGBTQ+ community.
Given the recent pandemic, we have an idea of the fear and isolation that has affected the millions of people who have contracted and died from HIV, and how HIV continues to impact on both physical and mental health.
Treatment for HIV arrived in 1996 in the form of Antiretroviral medication (or ART). This stopped HIV from progressing to Acquired Immune Deficiency Syndrome or AIDS, the term for the final stages of infection. This meant that HIV was no longer a terminal diagnosis.
HIV and dementia
As a result of ARTs, we now have generations of people reaching older age living with HIV.
As people age with HIV, they may also experience an unrelated dementia which can compound the experience of isolation. Statistics show that older people living with HIV often have multiple health conditions and daily medications.
When we age our risk of dementia increases. Following a diagnosis of dementia, there can be issues for the person diagnosed and the carer around managing medication, as well as concerns about disclosing HIV status to others due to the stigma still attached to it.
Before treatment arrived, people in the later stages of HIV would commonly go on to develop dementia; this is now rare. However, many people living with HIV will still experience symptoms of cognitive impairment (The Journal for Nurse Practitioners 2018).
Such issues with memory and thinking are termed HIV-Associated Neurocognitive Disorder or HAND (Alzheimer’s Society 2019). Symptoms of HAND may remain stable over time, rather than progressing to dementia, but people may also have problems such as depression. A cognitive health check should form part of regular HIV healthcare.
Where are we now?
Late diagnosis is a difficulty for older people with 56% of newly diagnosed older people receiving a diagnosis (The Terrence Higgins Trust 2019).
The stigma which people feel around a HIV diagnosis can prevent them or their carers from seeking support with HIV and cognitive impairment. Many report experiencing stigma from healthcare professionals, including residential homes. HIV is considered to be a disability under the Equality Act 2010 and this makes such discrimination unlawful.
Living with or caring for someone with HIV & dementia:
Are you living with HIV and worried about your memory or cognitive abilities?
Dementia UK understands that changes to cognitive ability can be an isolating experience. It’s also easy to feel overwhelmed managing appointments and medications. Talking about these issues with your HIV clinic at your next appointment could put you in touch with services to support you and help you to manage.
Are you caring for someone who is living with cognitive impairment and HIV?
Dementia UK’s Admiral Nurse Dementia Helpline has proven a valuable resource for carers of people with dementia. It will be able to advise and signpost to the support you need.
Furthermore, if you or someone you care for lived through the height of the HIV tragedy then the coronavirus pandemic could be uniquely stressful. It may have brought up traumatic memories or reawakened grief for lost friends or loved ones. Reaching out can reduce isolation and responding to these memories with empathy is very important.
How can I support someone with HIV & dementia to manage their medication
Remembering to take medication can be a challenge, particularly for people with dementia. HIV medications often have complex directions.
You can ask your pharmacist about a pill dispenser which will keep all medicines in one place and organise them by day and time.
Have a think about setting an alarm when medications are due; there are many apps available for this purpose.
If the person living with dementia is more able to concentrate at a certain time of day or has changed their eating times, discuss moving the timings of HIV medications with your HIV Clinic.
If the person living with dementia takes multiple medications, ask for a review with your GP to discuss this.
What we are doing
As well as the support provided through the Admiral Nurse service and Helpline, this year Dementia UK will be embarking on diversity initiatives. We will be seeking views from our Admiral Nurses and people we support to broaden understanding around these issues, and building services for underrepresented communities. We will also be linking in with our charity partners to understand the needs of those affected by HIV, HIV-related dementias and their carers.
Where can you get support?
For more information on World AIDS Day, ageing with HIV as well as the importance of sexual health check-ups, visit The Terrence Higgins Trust: