We have launched a new report that sets out the needs and experiences of the first group of individuals growing older with HIV.
Why it's important
As a result of the success of antiretroviral therapy, we are seeing the first generation of people who are growing older with HIV. More people than ever before are diagnosed with HIV aged 50 and over and more people with HIV are living longer. Now, over one third of people living with HIV in the UK are over 50, and this proportion continues to rise.
In 2010, we produced a report on the challenges faced by those growing older with HIV [PDF]. Seven years on much has changed. With a new and innovative peer researcher model that put people aged 50 and over living with HIV at the heart of the research, we have produced our new report into HIV and ageing: Uncharted Territory: A report into the first generation growing older with HIV [PDF].
Growing older with HIV is uncharted territory, and with it comes new challenges - challenges we must be ready to face head on to stand with those aged 50 and over living with HIV.
- 58 per cent of survey respondents were defined as living on or below the poverty line.
- Over a third of individuals aged 50 and over living with HIV were reliant on welfare benefits.
- 84 per cent of respondents were concerned about future financial difficulties.
- Of people living with HIV aged 50 and over, 81 per cent were concerned about how they would take care of themselves and manage daily tasks in the future.
- 82 per cent of individuals aged 50 and over living with HIV were concerned about whether they would be able to access adequate social care in the future and 88 per cent had not made financial plans to fund future care needs.
- 22 per cent of people living with HIV aged 50 and over rated their current wellbeing as ‘bad’ or ‘very bad’.
- A third of survey respondents were socially isolated and 82 per cent experienced moderate to high levels of loneliness.
The challenges and what we can do
Poverty is having a large impact on people growing older with HIV. This can be concern over affordability of care, lack of a financial safety blanket or lack of clear guidance on benefits which can affect wellbeing, isolation and other long term health conditions.
We need more clear and consistent information to be provided to those growing older with HIV on what benefits they can access. Department for Work and Pensions and Job Centre staff must be trained in order to support the specific needs of individuals aged 50 and over living with HIV.
As people living with HIV grow older they may face multiple health conditions that are made more complex by their interactions with HIV. People aged 50 and over living with HIV spoke of the need for coordinated and consistent support from health providers for long term condition management. GPs can help fill this gap and provide better support for those growing old with HIV.
People living with HIV face discrimination and stigma when accessing social care; by being denied access to care homes, charged increased fees, or treated in an unacceptable way by residential or domiciliary care staff. This discrimination does not arise out of malice, but ignorance. We need to ensure that care providers are fully trained and able to meet the specific needs of those living with HIV. They need to be equipped with up to date information, and provide safe and adequate care, free from discrimination.
Loneliness and isolation is impacting the wellbeing of people living with HIV over the age of 50 with 82 per cent experiencing moderate to high levels of loneliness. Wellbeing projects, such as Health, Wealth and Happiness, are there for people, aged 50 and over, living with HIV who need support. Health Wealth and Happiness offers self management support, counselling, advice, and opportunities to people aged 50 and over living with HIV to volunteer and become involved in the community.
People aged 50 and over living with HIV were at the heart of the research and should be at the heart of this campaign. With your help we can ensure that the first generation growing older with HIV get the support they need.
Read the report: Uncharted Territory: A report into the first generation growing older with HIV [PDF].
Read the executive summary [PDF].
Stand with people growing older with HIV in the UK today: share the report and this image on social media.
I’m standing with the first generation to grow older with HIV #UnchartedTerritory http://www.tht.org.uk/UnchartedTerritory