Ageing, care and support, chronic illness, Conditions and Diseases, congenital heart disease, Cystic fibrosis, discourses of ageing, Down Syndrome, gerontology, health, HIV/AIDS, impairment, life-limiting conditions, longevity, medical advances, old age, paediatrics, pediatrics, Research, survival, thalidomide
When I explain to an unsuspecting public that gerontology means the social science-based study of ageing and later life, the response is typically ‘oh, you mean old people!’ Well yes, that’s generally what I mean. The image that comes to mind might be one of grey-haired people, whiling away their hours in care homes, yet this is thankfully giving way to include people in good health living an independent old age – for example affluent baby boomers or ‘silver surfers’, able to travel the world physically and virtually during their long retirements. In short, how gerontologists conceptualise older people has widened significantly over the last two to three decades, and they work hard to reflect this through their teaching and research.
However, something else has been slowly and quietly changing over this time. Groups of people born with serious health conditions, who did not traditionally survive their childhood, and those developing previously life-limiting conditions in early or mid-life, are now routinely reaching mid- to late-adult life. These groups are what I term the ‘new’ ageing populations, brought about by a fuller understanding of the genetic basis of conditions, advances in preventative and curative medicine, and changes in the social attitudes and contexts in which health interventions are delivered. These developments have enabled many people to live a longer life than was possible just a few decades ago – and their numbers are growing in terms of the types of conditions involved, numbers becoming adult, and length of their lives.
For example, for the first time in history the number of adults with cystic fibrosis (CF) in the UK now exceeds the number of children with the condition. In 1938 the average survival age for those with CF was under one year; now 8% of people with CF are aged over 40, with those born with CF in 2000 predicted to live over 50 years. A similar picture is seen for those with severe congenital heart disease; very few of these children survived before paediatric cardiac surgery programmes began,yet at the turn of this century nearly equal numbers of adults and children were reported. For those with Down Syndrome, a recent North American study found that median age at death increased from 25 years in 1983 to 49 years in 1997, an average increase of 1.7 years per year over this period. The study noted that by comparison, median age at death in the general population increased by only 3 years during this entire period.
Continuing advances in medicine that have led to more people surviving the onset of life-threatening illness in childhood or mid-life include those with HIV infection. The advent and efficacy of highly active antiretroviral therapy has transformed this condition from an acute, fatal illness to a chronic, manageable one; in 2002 just one in nine adults accessing HIV care in the UK were aged 50 years and over, yet just a decade later the figure was one in five. In 2011, nearly half of the deaths of those with HIV comprised people aged 50 years or older, compared to just over a third in 2010.
Of course, society is occasionally let down badly by the failure to regulate medical advances. ‘New’ ageing populations affected in this way include people now living in their 40s and 50s with thalidomide impairment, who, although generally reporting good quality of life, were not anticipated to experience the vulnerability, fatigue and increased dependency they report as they grow older.
One quality that these ‘new’ ageing populations share is that although growing older, the oldest members of these groups are currently unlikely to reach a typical retirement age. However, they challenge our understanding of the boundaries of old age by extending issues conventionally associated with gerontology to wider groups of ‘old’ people, many of whom are pioneers, with no cohort or tradition ahead of them. Changes to the patterning and nature of ‘old age’ and health raise important questions about our understanding of the contemporary circumstances surrounding ageing for researchers, providers, policy makers and the general public alike. It is only now that we are beginning to discover how later life is experienced for these people, and what complex health and social challenges they face as they grow older.
When I explain to an unsuspecting public that gerontology means the social science-based study of ageing and later life, the response is typically ‘oh, you mean old people!’ Well yes, that’s generally what I mean – it’s just that now is the time to broaden our gerontological minds.