One of the notable headlines of the summer trumpeted shock and horror about the placement of younger people with disability in nursing homes for older people. Yet if we parse that message a little further, what does it say about our perception of the place and function of nursing homes?
Do we see them as an alternative to actual homes, which will provide older people with stability, privacy and dignity, including the ability to maintain relationships and express emotions and sexuality, as well as an enabling environment which, to the greatest extent possible, maintains both domesticity and care?
Or do we still harbour low expectations of enhancement for life with age-related disability, viewing the nursing home as a regretful and essentially custodial arrangement?
So-called Fair Deal
It is troubling that the population seem to be more in tune with the latter minimalist view. This is down to the degree we have tolerated the decay of the fabric of our public nursing homes, and allowed a contracting arrangement and funding levels for the so-called Fair Deal scheme, which does not facilitate a full and expansive vision of life in nursing homes.
The public indifference and negativity may arise from the fact that few of us imagine that we will spend some time at the end of our lives in nursing homes. That at any one time fewer than 5 per cent of older Irish people are resident in nursing homes diverts us from the fact that one- third of women and one-quarter of men are likely to spend time in a nursing home before they die.
Therefore, we need to see nursing homes not just as somewhere my older relative may need to live, but, more importantly, as a likely residence of our own at some stage in our later years.
Identifying with this common fate matters hugely: how we view our chances of having an experience (for example, cancer or heart disease) influences the political imperative. Politicians are smart and responsive: if they sense that we do not really feel that we have skin in the game, they turn their attention to areas where they think we do.
Turning up the popular and political temperature would then influence the health system, where promoting the cause of high-quality nursing home care currently continues to be a career-limiting move in both the Department of Health and the HSE.
Contrast the widespread acceptance of spending €500 million on a new children’s hospital with the lack of impetus to spend a similar sum for repair and renovation of public nursing homes, deficits that have been recognised and not acted upon for decades.
And it is not just for resources that we need to agitate: we need a broader vision of what you and I would like if and when we require nursing home care. The new models of care, such as the Green House (thegreenhouseproject.org) and the Eden Alternative (edenalt.org) replicate aspects of domestic life and provide a tantalising glimpse of what might be.
These include shrinking the nursing home into smaller units, complete with their own hall door and facilities that feel more like home. In addition, the approach supports aspects of home life that we take for granted, such as having meals at times of your choosing.
Part of our future
Implementing these changes requires expertise in the care of older people, leadership and political support. Political expression of our realisation of the nursing home as an integral part of our future care supports might prompt the nursing and medical professions to up their game in terms of their expertise and leadership.
So the ball is firmly in the court of Joe Public. Our first priority is to start talking about and reflecting on our own futures in nursing homes, and broaden it out from a perception of care for “other people”. In this we might adapt a recent campaign by the hospice movement, in which people were encouraged to think about their end of life.
Ironically, in my own clinical experience, talking about death at the appropriate time has never really been a challenge with patients and families. But talking about nursing homes is nearly always painful.
A person may come as a novice to each stage in life, but that transition can be softened if we discuss, identify with and prepare for the likely eventualities of our future, including nursing home care.
Desmond O’Neill is a consultant physician in geriatric and stroke medicine and a professor of medical gerontology at Tallaght Hospital and Trinity College Dublin. Dr O’Neill blogs at blogs.bmj.com/bmj/category/ desmond-oneill/ Twitter: @Age_Matters