As of 2022, 50% of people living with HIV are aged 50+, and more than 9,000 are 65 or older. Thanks to effective HIV treatment, people living with HIV are growing older, with many now needing, or thinking about accessing support from social care services.
People with HIV will need to access support for the same reasons as the general population, and it is rare for their needs to be a direct link with HIV itself. The majority will need support because they are less mobile, need help with daily tasks, or are recovering from a period of poor health and require respite care.
Some people may have cognitive issues, and should be supported in the same way as people experiencing these problems who live without HIV.
Children, young people, and adults with learning needs and disabilities who are living with HIV may also access social care services, and should also be supported in the same way as their HIV negative peers.
Expectations from social care services
Most people growing older with HIV have no experience of accessing support from social care services, but are aware they may need to in the future. Many we have spoken to have specific concerns or anxieties about doing so, especially regarding being stigmatised due to living with HIV.
Remember, all individuals are entitled to an assessment under the Care Act 2014, and a reassessment if their needs change, and to ensure their needs are met. Some people with HIV may have accessed social care support in the past, but will now have specific changing needs as they grow older with HIV.
People with HIV may have a carer, or family member supporting them, and they also qualify for an assessment of their needs for support
Providing support at home or in the community
- People want to be treated with the same dignity and respect as others receiving care in their neighbourhood.
- They are concerned that neighbours or other people living close by might find out about their status if people gossip about it.
- They don’t want to receive a different standard of care because people believe myths about how HIV is passed on.
- They should receive personal care, including bathing and washing, and their meals in the same way as others accessing care.
Proving support in a residential care home
- People want to be treated with the same dignity and respect as other residents.
- They want to maintain as much independence as possible, including taking their HIV medications.
- They want to be able to socialise and interact with other residents without being treated differently.
- They should receive personal care, including bathing and washing, and their meals in the same way as other residents.
- People who choose to access private care should not have to pay more purely because they are living with HIV.
Relationships, sex and growing older
- People growing older with HIV have a right to sexual and romantic relationships.
- Younger people supported by social care (e.g. with a learning disability) have the right to access support and information for their sexual health.
- They want social care colleagues to understand that they can’t pass on HIV when taking effective HIV treatment.
- Gay and bisexual men with HIV want to be able to maintain openness and confidence about their sexuality.
- When needed they want to be able to access HIV, STI and sexual health prevention and support.
If you would like more information to support people with HIV in your service, please contact us.