Challenges of ageing for people with HIV
David Rowlands examines the complex issues faced by the growing numbers of older people living with HIV today and what services they need to help them improve their quality of life, based on his latest online poll.
Effective human immunodeficiency virus (HIV) treatments mean more people than ever are living to older age with the disease. However, though it is now considered chronic rather than acute, older people with HIV remain at a disadvantage in comparison to their peers, particularly in terms of quality of life, often having poor levels of health, access to social care and financial security.
Now, for the first time, there is a significant cohort of those aged over 50 living with HIV. This presents new challenges in the way HIV care and treatment are designed, managed and delivered.
Many years of medical research have resulted in effective treatment for HIV, with the majority of people diagnosed in the UK now able to expect a very good prognosis and long life.
For many people, age 50 may not seem 'old', but increasingly 50 is being used to record and analyse statistics on older people living with HIV. In 2012 one in four adults living with diagnosed HIV in England were aged 50 years and over.
Older people are the fastest-growing group in the UK living with HIV, with estimates of 24,510 people living with HIV in the UK in 2012 aged 50 or over. These numbers are set to double over the next five years.
While advances in HIV therapies and treatment have helped extend anticipated life span, older patients who acquired HIV early in life find their general health and quality of life is at higher risk of impairment.
Historically, people living with HIV did not live into old age so many older people's services have no experience of their needs. Those with HIV have expressed anxiety about whether they may face discrimination from providers who misunderstand the condition.
People growing older with HIV face many challenges:
HIV treatment – The complexities and nuances of treating and caring for those patients with HIV.
Comorbidities – On top of an already complex condition are the complications and comorbidities arising from increased life expectancy. One study of people over 50 living with HIV found that just under two thirds were on treatment for other long-term conditions, and the number of these conditions was almost double what would have been expected in the general population at this age.
Common health conditions faced by older people living with HIV include:
• Cardiovascular disease – Untreated HIV can increase the risk of cardiovascular disease.
• Diabetes – HIV treatments may increase the chances of developing diabetes.
• High blood pressure – Some HIV drugs can cause increases in blood fats, similar to those caused by a fatty diet.
• Osteoporosis – Research suggests that there may be a greater risk of bone fractures in men and women who are treated for HIV.
• Cognitive functioning – Some drugs may penetrate the blood-brain barrier and could lead to cognitive impairment.
• Poly-pharmacy – The known and unknown effects of taking multiple medications. This remains an issue for older people with complex needs, particularly those with HIV.
• Mental health – The uncertain long-term prognosis for HIV, the changing estimates of life expectancy and level of health, as well as the amount of public prejudice and stigma surrounding the condition, can all negatively impact mental health.
Social care
As people living with HIV live longer they will increasingly require the same range of social care support that many require in later life. How this works in practice and is accessed (with the associated risks linked to disclosure and stigma) is a concern for many.
Work and finance
Many diagnosed with HIV early on in their lives were unable to secure mortgages and pensions. Others cashed in pensions early expecting reduced life expectancy. Support from family may be reduced as often there is no partner and/or no children. Now, facing later life with the prospect of having to pay for aspects of their care is a source of anxiety.
Stigma
A common strand running through these issues is the stigmatisation of HIV itself. This contributes to a culture of secrecy and fear among many patients.
The goal is to ensure that, with appropriate care and support, everyone with HIV can live a long and fulfilled life.
Treatment and prevention
The separation of services providing treatment and prevention is clearly unhelpful. An effective system demands close monitoring and regular reporting on key performance indicators (KPIs) for treatment and prevention, together with dialogue between commissioners and third sector and voluntary sector organisations.
Primary care and specialist services
Improving the quality of primary care and establishing better interaction between HIV specialists and other community clinicians is essential to providing good quality, patient-centred care, particularly when managing complex, long-term conditions due to ageing and being older with HIV.
Training and education
These are essential to greater levels of competence and confidence among all healthcare professionals in caring for the older patient with HIV infection and comorbidities.
HIV and the ageing process
In our recent poll 88 per cent of people agreed that multi-disciplinary team involvement is critical to the sharing of knowledge and expertise in treating older patients with HIV. HIV clinicians need to work together with specialist clinicians and with geriatricians in helping patients manage common comorbidities.
Care provision
As people with HIV live to an older age, a greater number will require residential care or support in their own homes. It is important that care providers are ready to offer people living with HIV the services they need.
Care service providers need to be better informed and equipped to help care for those living longer with HIV. Many providers have limited experience here so skills and training need to be improved. Here is an opportunity to establish what a good care provider should offer in terms of services and facilities for long-term conditions.
Confidentiality
People with HIV are familiar with working with specialist healthcare professionals who have maintained confidentiality. As the group widens to include care providers (such as care workers and personal assistants) there is the fear of other people becoming aware of their condition and the risk of confidentiality being compromised. Reassuring patients of the importance placed upon confidentiality and the procedures in place to uphold this throughout the health and social care system is essential to help build trust and confidence between patient and professional.
There are many challenges and obstacles that those living with HIV face and have to overcome. We must harness this resilience to improve quality of later life not only for those with HIV, but for all older people.
Underpinning this is the need for any redesign of services to focus on empowering older patients to live a life with HIV. Services need to work with the patient, balancing good HIV treatment with treatment for comorbidities and integrating social care support.
The National AIDS Trust has produced the publication 'HIV: A guide for care providers' , which sets out clearly how HIV cannot be transmitted, as well as providing information about medical care, information on psychological support, relationships and sexual health, diet, end of life care and the importance of confidentiality and protecting the rights of people living with HIV.
Poll data
There were 120 respondents between 18 July and 24 August, with data collected via online hosting at www.Design-Redefined.co.uk and social networking sites. The poll asked if multi-disciplinary team involvement is critical to the sharing of knowledge and expertise in treating older patients with HIV. In response to the statement: HIV clinicians need to work together with specialist clinicians and with geriatricians in helping patients manage common comorbidities, 88.3 per cent agreed, 10.9 per cent disagreed, while 0.83 per cent were unsure. Thanks to the members of the community for their input into the poll and this article.
The next poll examines smoking and HIV. Click here to take part.
About the author:
David Rowlands is the director of Design-Redefined.co.uk, delivering effective healthcare communications to professionals and patients.
His key objective is to design, develop and deliver community projects to enable people living with, or affected by, HIV and/or HCV to become better engaged with their treatment and care.
Working over a number of media platforms, across the public, private and third sector, he is able to establish a link to these sometimes hard-to-reach communities.
Contact David on Email: david@design-redefined.co.uk website: www.design-redefined.co.uk
Twitter: @DR_tweetUK
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